Supporting people: Towards a person-centred approach 9781847427816

Table of contents :
Supporting People
Contents
Acknowledgements
Foreword
Introduction
Part One: The Background to Person-Centred Support
Setting the scene for social care
Person-centred support
Part Two: Person-Centred Support: Barriers and Ways of Overcoming Them
The funding of social care
The social care workforce
Social care and carers
Institutionalisation
Organisational issues
Social care practice
Part Three: Broader Issues for Person-Centred Support
Service user cameos
Capacity-building for support
Access to the mainstream
Participation
Part Four: Making Change to Achieve Person-Centred Support
Change for person-centred support
Appendices
The Standards We Expect. How we did it: project methodology and methods
The Standards We Expect: associated publications
The Standards We Expect. How we did it: project materials and resources

Citation preview

Supporting people Towards a person-centred approach

Peter Beresford, Jennie Fleming, Michael Glynn, Catherine Bewley, Suzy Croft, Fran Branfield, Karen Postle

Supporting People Towards a person-centred approach Peter Beresford, Jennie Fleming, Michael Glynn, Catherine Bewley, Suzy Croft, Fran Branfield, Karen Postle

First published in Great Britain in 2011 by The Policy Press University of Bristol Fourth Floor Beacon House Queen’s Road Bristol BS8 1QU UK t: +44 (0)117 331 4054 f: +44 (0)117 331 4093 [email protected] www.policypress.co.uk North American office: The Policy Press c/o The University of Chicago Press 1427 East 60th Street Chicago, IL 60637, USA t: +1 773 702 7700 f: +1 773-702-9756 e:[email protected] www.press.uchicago.edu © Peter Beresford, Jennie Fleming, Michael Glynn, Catherine Bewley, Suzy Croft, Fran Branfield, Karen Postle 2011 British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library. Library of Congress Cataloging-in-Publication Data A catalog record for this book has been requested. ISBN 978 1 84742 762 5 paperback The right of Peter Beresford, Jennie Fleming, Michael Glynn, Catherine Bewley, Suzy Croft, Fran Branfield and Karen Postle to be identified as authors of this work has been asserted by them in accordance with the Copyright, Designs and Patents Act 1988. All rights reserved: no part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without the prior permission of The Policy Press. The statements and opinions contained within this publication are solely those of the authors and not of the Joseph Rowntree Foundation, the University of Bristol or The Policy Press. The Joseph Rowntree Foundation, the University of Bristol and The Policy Press disclaim responsibility for any injury to persons or property resulting from any material published in this publication. The Policy Press works to counter discrimination on grounds of gender, race, disability, age and sexuality. Cover design by The Policy Press. Front cover: ‘There is a voice – speak out! The voice is us.’ © Kevin Chettle and with permission from Advocacy in Action. Printed and bound in Great Britain by Hobbs, Southampton. The Policy Press uses environmentally responsible print partners. Reader’s Guide This book has been optimised for PDA. Tables may have been presented to accommodate this devices’ limitations. Image presentation is limited by this device’s limitations.

Peter Beresford For Julian Linton, my friend who died aged 21 and first helped me to understand what disability meant in our world. Jennie Fleming For my mother, Elisabeth Fleming. Catherine Bewley would like to thank her colleagues – Jean Collins, Kiran Dhattani Pitt and Sapna Sharma – and the people with learning difficulties who worked with Values Into Action on this project. Suzy Croft For George, Ethel, Les, Tom, John and Emily: never forgotten. Fran Branfield To all those service users out there whose voices remain silent. Karen Postle thanks the people in the local coalition of disabled people with whom she worked who first taught her the importance of selfdirected support and the proper involvement of people using services in their design and development.

Contents About the authors Acknowledgements Foreword by Shami Chakrabarti Introduction Part One:The Background to Person-Centred Support one Setting the scene for social care two Person-centred support Part Two: Person-Centred Support: Barriers and Ways of Overcoming Them three The funding of social care four The social care workforce five Social care and carers six Institutionalisation seven Organisational issues eight Social care practice Part Three: Broader Issues for Person-Centred Support nine Service user cameos ten Capacity-building for support eleven Access to the mainstream twelve Participation Part Four: Making Change to Achieve Person-Centred Support thirteen Change for person-centred support Appendices one The Standards We Expect. How we did it: project methodology and methods two The Standards We Expect: associated publications three The Standards We Expect. How we did it: project materials and resources

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About the authors Peter Beresford OBE is Professor of Social Policy and Director of the Centre for Citizen Participation at Brunel University. He is also a long-term user of mental health services and Chair of Shaping Our Lives, the national independent service user controlled organisation and network. He has a longstanding involvement in issues of participation and empowerment as writer, researcher, educator, service user and campaigner. He is a member of the Ministerial Reference Group for Adult Social Care, a trustee of the National Skills Academy for Social Care and a member of the Advisory Board of the National Institute for Health Research Catherine Bewley is Sexual Abuse Caseworker at Galop, a community anti-violence organisation working with lesbians, gay men, bisexual and trans people across London. In addition to advocacy and casework, she undertakes creative outreach, especially with trans community networks. Catherine has been a campaigner, writer, researcher, trainer and coworker around disability rights with people with learning difficulties since 1992, latterly as Director of Values Into Action, an organisation of people with and without learning difficulties working together for equality. She has a long commitment to creative, community-based involvement and is a governor of Effra Early Years Centre in Brixton, south London. Fran Branfield has worked within the disability and service user movements for over 20 years. She has a strong track record of managing and undertaking research, evaluation and development work and has published many papers and project reports. For eight years Fran was Director of Shaping Our Lives, which is a national service user and disabled people’s network. Fran is an experienced diversity, accessibility and equality consultant, drawing on both her own personal experience of impairment and her academic background. At present she is the director of Cairn Community Partnerships Ltd, a consultancy which offers independent facilitation, accessible participation and stakeholder engagement.   

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Suzy Croft is a practising social worker and Social Work and Bereavement Team Leader at St John’s Hospice, London. She is also a research fellow at Brunel University and has published widely in the field of social work and social policy. She has worked in palliative care social work for 20 years, is an active member of the Association of Palliative Care Social Workers and former trustee of two leading UK palliative care organisations. She has a background of work on participation and empowerment and she is currently a member of the Interim Board of the College of Social Work Jennie Fleming is the Director of the Centre for Social Action and Principal Lecturer (Research) at De Montfort University. Before coming to De Montfort University she had many years professional work experience as a youth and community worker and social worker and is professionally qualified in both disciplines. Jennie is committed to working in a participative and empowering way. At the Centre she has been active in the development of participative research methodologies, working with young people, community members and service users to ensure their input and contribution to research projects that affect them. Michael Glynn’s career has been focused on promoting independent living for disabled and older people.  He has held a number of positions in the third sector, particularly in supporting people to use direct payments. He is currently working in Solihull as Personalisation Programme Manager where he has led the local development of personal budgets. Karen Postle  has a background in social work, counselling and mediation and is a registered social worker. She has researched social work with adults/older people and published widely, including, as joint editor with Mark Lymbery, Social work: A companion to learning (Sage Publications). Karen taught for five years at the University of East Anglia and has worked as a research adviser for INVOLVE (Public involvement in health, public health and social care research). Following early retirement she works on a sessional basis for the universities of Portsmouth, Southampton and Winchester and is a practice educator and a volunteer neighbour mediator.

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Acknowledgements Producing this book and undertaking the project on which it was based has been a massive, truly collective activity. We have many individuals and groups to thank. First we want to thank all the people originally involved in the project, including Jabeer Butt, Jean Collins, Michael Turner and Kiran Dhattani Pitt. We want to say thank you to the Advisory Group, the Independent Living Reference Group, Alex O’Neil, Emma Stone, Julia Unwin, Anne Harrop, Don Brand and Christine Appleton of the Joseph Rowntree Foundation for all their help. Most important, we would like to say a sincere thank you to all the people who took part in the Standards We Expect project in one way or another as service users, carers, practitioners and managers. We would like too to thank our eight partners and network of 12 organisations for engaging and staying with the project. We’d additionally like to thank Mary Nettle, Patricia Chambers and Jean Collins for reviewing a draft of the book. Thanks to many people for their involvement over the life of the project as advisers, trainers and supporters, including Ossie Stuart and Ann MacFarlane.We would also like to thank Ronny Flynn for all her help in addressing equality issues in the book, the team at The Policy Press for all their help, particularly Ali Shaw, Kathryn King and Laura Greaves. Our thanks to Kevin Chettle for his wonderful cover illustration and Alison Skinner for her great help with the references. Finally we’d like to say a particular word of thanks to Charles Patmore, for all his help throughout the whole process of carrying out the project and writing the book, a person more modest than we thought he should be.

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Foreword Shami Chakrabarti We all, most likely, will need social care for ourselves or loved ones at some point in our lives. It may be home help for an elderly relative or assistance for a friend or family member with mental health problems. Regardless of the circumstances, we would hope that our loved ones (or indeed ourselves) would be treated with decency and dignity – in essence, as a human being – by care professionals we come in contact with.  The way in which we view and treat marginalised people is surely a measure of a civilised society, and the basis of a just society is that the human rights values of dignity, equality and fairness must be extended to everyone.The right to humane treatment is one of our very fundamental, inalienable and unqualified rights. However, it is often those pushed to the margins of society – mental health service users, disabled, homeless and older people and those living with addiction – who are most vulnerable to having their basic rights neglected, and their voices unheard. Most care providers do an outstanding job under difficult circumstances but we have all shuddered at stories of ill treatment of vulnerable people by the very people charged with looking after their well being. One case of ill treatment by a carer of a vulnerable person is one too many. Supporting people: Towards a person-centred approach promotes a care system that is individual focused rather than target driven, and unapologetically widens the debate around the provision of social care, its means and its ends. It challenges the dominant orthodoxy in academic and practical circles, and advocates a rights-based, personalised approach to care and support that would put the needs, choices and rights of the recipient at the heart of their care package. It challenges policymakers and practitioners to take a closer look at how we treat and care for some of the most vulnerable and marginalised members of our society. It strongly argues against the institutionalisation and categorisation of people in need of social care and urges that carers must always consider the right to privacy and family life, the right to liberty, to freedom from discrimination, to freedom of thought, religion and belief.   While the social care system has come a long way from the punitive regime of the Victorian era to the post-war welfare state, the authors of this text show how ideas and practices in social care are and must viii

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be in a constant state of evolution. There is always ample space for debate, critical scrutiny and, where required, improvement.Advocating a rights-based, person-centred approach to social care, practised by well-trained, sensitive practitioners can only be the next crucial step in this evolution. 

    

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Introduction Do we participate in a politics of cynicism or a politics of hope?... I’m talking about Hope in the face of difficulty. Hope in the face of uncertainty. The audacity of hope! (Barack Obama, Speech addressing the Democratic National Convention, 2004) All the indications are, that in the future first in western societies and then globally, more and more people will need support to live. Medical innovation and broader changes are making it possible for more of us to be born, to live beyond infancy, to survive once life-threatening illnesses and conditions and to live much longer lives. But more often now, we may need help. In western societies like ours, the policy dedicated to addressing such issues is social care, a policy which interestingly seems to carry little resonance for most people. Social care addresses most of the troubles that human beings are heir to. This ranges from madness and distress, poverty, homelessness, abuse and neglect, to inherited and acquired physical, sensory and intellectual impairments. The frailty that comes from ageing, chronic disease, loss, death and dying is also its province. Social care may intervene in our lives from the beginning to the end, at some of the most difficult times and when people are faced by the most painful experiences. It may do so on a voluntary or involuntary basis, such are the official powers invested in it. This is a time of major rethinking and change in social care policy within the UK, but such change also has international significance. It also comes at a time of major UK political and economic change. This book looks at what a system of social care based on providing the kind of support people want, may actually look like and how it can be achieved. To do so, it draws particularly on what those people themselves have to say.

The shortcomings of social care It has long been recognised that the social care system often does not provide the sort of care and support that people want. Using social care services frequently results in the service taking over the person’s life, rather than the person feeling supported by the service. People 1

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needing support sometimes decide not to have services they see as inappropriate, or may be forced to use them for want of any reasonable alternative. Either way, people using or wanting to use services, frequently feel constrained, patronised, controlled or abandoned. In turn, staff providing services are often frustrated and disappointed because they are failing to provide the support they know people want and valuable resources are wasted because services are failing. It is now estimated that about six million adults in the UK live with some kind of additional support and that an overlapping six million provide them with what has come to be called ‘informal care’ – looking after those close to you. These are very large proportions of the population. Yet social care, the policy most focused on assisting them, is one that only a minority of people recognise and few have a good understanding of. This stands in strong contrast to health, which in countries like the UK has become a key political and electoral issue. When we need social care for ourselves or someone close to us, we come to appreciate its central importance in our lives. Then also many of its shortcomings emerge. Despite its central importance, social care is not a policy to which we have a universal entitlement or one based on the same founding philosophy as the National Health Service (NHS), of being ‘free at the point of delivery’. Although it can be crucial in our lives, social care is not a policy or service we can assume we will receive, if and when we need it. Social care is also often seen by those involved as having low political priority and beset by long-term problems of underfunding. There are also fears among policymakers that while the demand for support is increasing because of the growing numbers and proportion of older and very old people, the supply of support available from both paid carers and people’s families is likely to decline. There is a strong sense from all key stakeholders – policymakers, service users, their families, practitioners and managers – that social care cannot go on as it has been. This came to the fore at the beginning of the second decade of the 21st century with major political proposals for change, a time also of major political change. As well as the broader difficulties which social care faces, its stakeholders highlight its inefficiency, inequity, inadequacy and poor quality, with regular reports of neglect and abuse. Thus there is an enormous contradiction at the heart of social care. How is it that the issues it addresses, which can affect us all and may have a fundamental impact on our lives and our relation with society and others, seem to have commanded such little political priority and public interest, resources or understanding? In recent years in the UK, governments’ treatment of the National Health Service has become 2

Introduction

a benchmark by which they can expect to be judged. Yet social care, which is as large and arguably of at least equal significance, generally remains in the shadows. Perhaps this is because disability, distress, ageing, death, dying and social care’s other concerns, continue to be heavily stigmatised and treated as taboo in societies like the UK. People wish to distance themselves from such situations and associate them with groups they would rather regard as ‘other’. Significantly the only social care issue that has commanded regular media attention in recent years has related to its particular system of funding. This has given rise to a sense that people who have been prudent and accumulated savings have to pay for their ‘care’, while those who haven’t, don’t. Thus what attention social care does receive tends to be divisive rather than progressive in effect. Social care is also an ambiguous policy. Under one heading or another, from the time when churches and monasteries were key sources of care, through state poor law, to modern public policy, there has been some form of social provision to offer support. But such policy and related legislation have always had a controlling role too. They have also had a role in regulating people seen as dependent, who it is felt should not be; for restraining behaviour perceived as threatening or deviant; sometimes separating and incarcerating people seen as ‘problematic’. Moral as well as social and professional judgements have long played a part in influencing responses to different groups of service users. We cannot think about social care and support for people without addressing much broader issues. These extend to political process and ideology, international economics, political and social structures, human roles and relationships, organisations and management, education, communication and the media, changing demographics, cultural patterns and family structures. We also need to consider social care in relation to other public and private policies which impinge on people’s lives and may have a bearing on their need for formal and indeed informal support. Support is about fundamental issues in our lives. Its implications are far-reaching. It is also a measure of how a society responds to people who need ongoing help; what value it places on them and policies relating to them. Social care says much about how we regard each other as human beings and citizens, about our individual and collective rights and responsibilities and also those of the state. Thus what starts with a narrow relatively unknown policy, rapidly unfolds to emerge as an issue of fundamental importance to human beings and society. Also, its significance can only increase. As has been 3

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said, it is likely that more and more of us for different reasons will need ongoing support. This is likely to be true globally, as well as nationally.

The need for change There is now a strong sense of the need for change in social care. This can be seen as a consequence both of the practical problems facing social care and the development of new ideas and thinking about it. Pressure for change comes from service users, their families and many of those working within and concerned with social care. At the same time and perhaps as a consequence of all this, there are plans for fundamental change in social care policy, practice and funding. All political parties and successive governments have expressed their commitment to making radical change in social care; to transform support policy and services. The idea is that people should have the support that they need individually matched to enable them to live the fullest life they can and have the best quality of life possible. A range of different terms, ideas and methods has been used to describe and take forward this change. It is this which is the focus of this book. The term used in this book is ‘person-centred support’, although, as will be seen, other terms like ‘personalisation’ have also been used. The book builds on a unique national research and development project supported by the Joseph Rowntree Foundation (JRF) the Standards We Expect project. It addresses three key questions: • What does ‘person-centred support’ really mean? • What are the main barriers to such person-centred support? • How can these barriers be overcome? The three questions we have asked about person-centred support enable us to see what has been wrong with successive social care systems – where and how they have fallen short – and what people on the ground are doing which can work to put this right. People’s answers to these questions also take us a step further. They help provide a knowledge base to explore what a sustainable, inclusive and fair social care system, which is geared to offering person-centred support, might look like and how it might be achieved. These are the issues we have sought to address in this book. Thus, this is a book that is rooted in where social care has been, but which determinedly seeks to add to the evidence base to help take it where people want it to go. What is unusual about this book is that in seeking to address these key questions, it draws primarily, not on what politicians or policymakers, 4

Introduction

professionals or planners have to say – as is usually the case. Rather, it builds on the experience and ideas of the people support most directly affects, most matters to and who are most closely involved in it. These are service users, their families and those who work directly with them, offering them support. We have turned to them, to define ‘person-centred support’ rather than imposing our own meanings. We believe that such person-centred support is a worthwhile and wise goal for social care policy and practice – seeking to fulfil each person’s different wants and needs and shared human and civil rights. The national project on which this book is based, the Standards We Expect, involved a very wide range of social care services and service users. It was carried out between 2005 and 2009. So it covers the period both leading up to and including the beginning of the planned radical reform of social care. It included services and organisations that were having to address planned changes, as well as services which were pioneers of such developments. Thus we can get a picture both of current realities in social care and the emergent issues linked with planned new ways of working. We can learn from vanguard developments, as well as seeing how things are working more generally. The team that has written the book and carried out the national project it draws on is also an unusual one. This was a ‘user-led’ project; that is to say one which a service user controlled organisation played the lead role in managing and shaping. Yet at the same time it was a collaborative project bringing together in a consortium a number of people with a wide range of experience and roles. It included a current social work practitioner, service users, academics and people with expertise and experience in community development and social action approaches, working with older people and with equality and diversity issues. This multiplicity of perspectives was reflected in the nature of the four organisations which collaborated to carry out the project, a national user controlled organisation, two university centres and a voluntary organisation where non-disabled people co-work with people with learning difficulties. A second point needs to be made about this book and the project on which it draws. Both are not only concerned with reporting a time of transition, but also with influencing it. As we have said, the project was a research and development project. As well as trying to find out more about major changes currently taking place in social care, it was intended to try and support their development, working with people and organisations who were attempting to take them forward. This does not mean that either the book or the project had an agenda of its 5

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own. Instead the aim was to make sense of what people were trying to do to improve the support people receive and make it more ‘personcentred’ and, to assist them as they wished in taking this task forward. Our concern has been to find out more about person-centred support and to help make it happen. This book looks at both of these. A series of themes emerge repeatedly in social care. These relate to the values, funding, workforce, practice, nature, organisation, availability and accountability of social care. These are some of the key themes that this book addresses and according to which it is organised. Eleven of the first twelve chapters are headed by a standard for person-centred support emerging from our project, the Standards We Expect. The book is organised in four parts. Part One sets the scene providing the policy and broader context for current developments in support and social care and introduces the reader to the project which provides the book’s evidence base. Part Two explores a range of key issues emerging from what service users and workers say. It looks at both barriers emerging in the way of person-centred support and ways of overcoming them that are emerging in practice. Part Three explores a series of issues which offer ways forward for effective policy and practice. Part Four, the final chapter, looks at how such change may actually be achieved. As well as extending the knowledge base of social care and providing additional evidence from key often overlooked perspectives to inform theory and understanding, we hope this book will provide a basis for developing person-centred support at a local level in agencies and services. It reports a massive range of direct experience in working to do this. During the course of the project we undertook, we know that service users, workers and managers gained support and inspiration from sharing each others’ ideas and experience. This was particularly apparent at the two ‘get-together’ events we organised. We hope that bringing together their wisdom and expertise in this way will help many more people working to improve the lives of service users. We have tried here to make clear what this book is. It brings together evidence, often in much greater detail than before, from key stakeholders about what social care will need to offer and look like if it is to meet people’s rights and needs. It also offers guidance and ideas about what may be needed to bring this about and what kind of change will be required. But we also need to make clear what this book is not. It is not part of that modern tradition, which in our view has overshadowed and damaged social care – the tradition of managerialist and technicist approaches to reform and restructuring. Thus readers will not find here sets of ‘toolkits’ and techniques. They will need to look elsewhere for such mechanistic instruction. In our view, while 6

Introduction

there have been many such toolkits, ‘top tips’ and advice on ‘quick wins’ in social care, they have generally not been helpful.

How the book is organised As we have said, the book is organised in four parts. Part One sets the scene and provides a background to the book and the project it draws upon. Chapter One introduces the reader to the role and current realities of social care in the UK and the urgent pressures that now exist for radical reform. It begins the process of examining key concepts for change like ‘personalisation’, ‘self-directed support’ and ‘personal budgets’. It then offers a brief guide to the change and development project, the Standards We Expect project, whose evidence the book is based on, examining its origins, philosophy and methods. A more detailed guide to the project and its methodology, methods and evaluation, is offered in Appendix One for interested readers. Chapter Two looks at the origins and meaning of ‘person-centred support’. It explores its relation with person-centred planning and independent living. It begins with existing definitions and then looks more closely at what the key constituencies of service users and workers have to say about it. We set out a series of key components that they associate with person-centred support and the meanings that they attach to it. Part Two of the book includes a series of six chapters. Each of these highlights a major area where people identify big barriers in the way of person-centred support, ways in which these are being addressed on the ground and what seems to work to overcome them. These are the issues that service users and workers themselves highlight in their critiques and comments about social care, but they also reflect concerns that are more widely highlighted in relation to support and social care. The subject of the first of these chapters, Chapter Three, is funding. Funding is identified as the biggest barrier facing social care and the development of person-centred support. It currently restricts who can get support and the adequacy and appropriateness of the support they receive. Financial limits not only inhibit policy and practice, but also make it difficult to improve provision and to plan for the future. Nonetheless we hear from agencies and practitioners who have developed creative ways of overcoming the financial barriers in the way of person-centred support. We hear how the longstanding system of testing people’s means and needs, works against meeting their rights and needs, particularly penalises some groups and works against independent living and person-centred support. 7

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Chapter Four focuses on the social care workforce. Successful moves to more person-centred support demand practitioners who are highly skilled, well trained and well supported. The poor employment terms and conditions of the present social care workforce are strongly at odds with this. Its sustainability for the future is uncertain. Practitioners frequently feel undervalued and unsupported. Staff training is limited and patchy, with wide variations in the availability and quality of staff supervision and support. The low status of social care work in the UK is seen as a major problem. Improvements in all these areas, while not necessarily costly, emerge as having a disproportionately positive impact on morale and effectiveness. Staff levels are often inadequate. Changes in the roles and tasks of the social work and social care workforce raise complex issues both for professionals and person-centred support. Chapter Five discusses the ‘informal care’ provided by people’s families and loved ones in relation to the achievement of person-centred support. Public policy has placed increasing emphasis on people’s family and friends providing informal care. This emerges as another major barrier restricting independent living and person-centred support, as well as disadvantaging service users who do not have family or friends to help. Serious problems are highlighted of families speaking for service users, restricting their say and opportunities to live more independently. The issues raised are difficult and complex. Families often do not receive adequate information or support to facilitate service users’ independence, yet may have the lead responsibility to support them. Capacity building and support for both service users and their families and friends can challenge these barriers and services identify and have developed practical ways of achieving this. We see how reliance on support from families as informal carers can undermine relationships and is unlikely to be a tenable policy in the longer term, as well as being inconsistent with person-centred support. Chapter Six shows how the lives of many residential and longterm service users are still restricted by institutionalisation, creating dependence and disempowerment and imposing major barriers in the way of independent living and person-centred support. We also hear about a range of ways in which services seek to overcome these barriers, particularly through providing training and support for both practitioners and service users. Three broader problems also emerge, reinforcing the institutionalising effect of segregated services. These are: restrictions on control of money, barriers to valued employment and restricted access to suitable housing trapping people in residential services and preventing them from maintaining local links and networks. At the same time, the association of independence with individualism is 8

Introduction

also questioned. Both service users and workers highlight problems of loneliness and isolation and express concerns about people being moved on from specialist support services as a means of cost saving. Service users highlight the importance of getting together, both formally and informally, with each other, as a way of improving their lives. Chapter Seven explores organisational barriers that are limiting the lives of service users and preventing practitioners working in more person-centred ways. Two issues are particularly highlighted by service users and providers: increasing bureaucratisation and a preoccupation with negative risk, rationalised in terms of ‘safeguarding’ and maintaining ‘health and safety’. Practitioners highlight increasing controls placed on them and the perverse effects of a policy focus on measurement and ‘targets’. They identify ways in which measures can be more consistent with person-centred working and the philosophy of independent living. The dominance of a ‘risk averse’ rather than ‘risk aware’ culture impedes practice and limits the lives of service users, particularly in residential services. Service users and providers highlight the resulting tensions and discuss ways in which personcentred support can be encouraged. Chapter Eight focuses on the practice of social care workers. Service users consistently highlight a range of human qualities and skills that they value in social care practitioners. These closely coincide with the values and goals of person-centred support. Service users feel that practitioners often make unhelpful assumptions about them and this reflects a broader, often disempowering ‘one-size-fits-all’ service culture. Practice in domiciliary care services, emerges as particularly inflexible and unhelpful. Service users associate good practice with the development of ongoing and empowering relationships with practitioners. These are seen as crucial for person-centred support. Continuity, good communication, particularly with people who communicate differently, and listening skills are also highlighted as key components for person-centred practice. Part Three of the book focuses on a range of broader issues that participants highlighted as essential to developing an effective system of person-centred support, based on the philosophy of independent living. Chapter Nine, the first of these chapters, offers a set of more detailed cameos of service users involved in the project to provide further insights into the experience of person-centred support, the problems that can arise when it is not available and some of the barriers that can be encountered in developing and practising it. It allows us to get both a fuller and more rounded picture of people’s lives and support and see how this relates to a person-centred approach. 9

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Chapter Ten reports on the first of the broader issues that are the focus of this part of the book. It looks at how support, particularly personcentred support, can be made more accessible to people. There has been growing recognition among policymakers of the importance of offering people information, advice, support and advocacy to negotiate the social care system. Many people don’t know what services are available and have difficulty making informed judgements and choices. People in our project talked about the importance of reliable and accessible information for good decision-making and how this is best provided. But it becomes clear that other more ‘hands-on’ approaches are needed to help people gain the skills to negotiate the complexity of the social care system which is constantly changing and to make it more accessible. This will be key if person-centred support is to reach and work for all service users and a range of different approaches are identified which have been developed to do this, including advocacy, service brokerage and personal budget support schemes. Chapter Eleven examines improving people’s access to mainstream services. This has long been identified as a key element of independent living. People don’t expect to live their lives within social care services. These neither can, nor should be expected to meet their rights and needs in isolation. Person-centred support points to a more holistic approach which takes a wider view of how people can live their lives on as equal and inclusive terms as possible in society. Service users highlight three particular issues where they experience major barriers. These are travel and transport, education and continuing disability discrimination. They discuss the problems they face and how these can be overcome. We also look specifically at the two additional barriers creating inequality of access to services. These are geographic variations and the particular barriers facing people from black and minority ethnic communities, focusing on an initiative to address the latter. Chapter Twelve explores participation. While governments have increasingly expressed their commitment to user involvement in social care and beyond and it can be seen as a cornerstone of personcentred support, service users have many negative as well as positive experiences to report. They highlight tokenism and a lack of support for involvement, resistance from services and managers, the use of inappropriate methods and lack of feedback and resulting change. They value regular involvement and stress the need to involve both service users and practitioners and in areas where people are most productively involved, giving examples of both effective and unhelpful schemes, as well as showing the complex issues that may be entailed. They stress

10

Introduction

the gains from collaborative working and offer guidance for successful and inclusive involvement. Each of the chapters in the second and third parts of the book includes more detailed case studies illustrating some of the barriers in the way of person-centred support and ways in which these are being tackled. In addition, as we have said, there is also a series of four in-depth pen portraits of service users highlighting broader themes emerging from the project. Part Four of the book is concerned with change, with both the ‘what’ and the ‘how’ of achieving a system of social care based on person-centred support. Chapter Thirteen begins by looking at how we sought to make change in our project. It reports on the developmental activities that were part of the project on which this book is based, which were intended to support and encourage change. It looks at the philosophy and methods used, working alongside services, practitioners, managers and service users. It sets out how local organisations and people are trying to make such change. It examines different ideas and approaches to making change in social care, including both ‘top-down’ and ‘bottom-up’ approaches, in the context of major changes now taking place and discusses the barriers we identified and how these might be overcome. The chapter also discusses what an inclusive approach to making change which properly addresses diversity might look like. It provides a set of principles for making change in line with personcentred support. Finally, building on the findings from this and other work, it discusses what a fair, sustainable system of social care based on person-centred support might look like and sets out strategies for achieving, evaluating and encouraging this for the future. The book and the project on which it is based, were also concerned with the standards that service users, carers, practitioners and managers thought needed to be in place to achieve person-centred support for service users. We have drawn these standards together in this final chapter, since they embody the characteristics that a system of social care will need to be based on to make possible person-centred support for all. As we said earlier, at the beginning of each chapter, we have also set out the specific standard that relates to the focus and findings of that particular chapter. The book is complemented by a set of appendices, the first of which is included in this book, while the others are available as free downloadable additional resources from the Supporting people book page at www.policypress.co.uk. The latter include a number of documents we developed and used in the Standards We Expect project to carry 11

Supporting people

it out in an ethical, inclusive and participatory way, and these will hopefully help others seeking to undertake similar projects. These are listed in Appendix Two. Appendix One, as has been said, details how we undertook the project, including both its research and developmental aspects. It reports on the way in which we carried out the research and change project which the book draws on and the research methods and methodology we employed. We believe that this book provides a much clearer picture about supporting people than we have previously had – of where we are now and where people want to go. This book is based on empirical evidence, rather than any preset assumptions or theories of the authors or policymakers. It builds on the views, experience, ideas and hopes of the hundreds of people who have been involved with us through the Standards We Expect project on which this book builds. They have been involved in many ways; in discussions, in active development, in training and learning, through participating in meetings, contributing information or making contact. We hope that their wisdom and experience will help readers, as it has helped us, both to understand better and to work towards ways of supporting people, that are truly person-centred and which foster and sustain people’s rights and control.

12

Part One:The Background to Person-Centred Support

one

Setting the scene for social care When it comes to quality and standards, we should have our views taken into account as service users and carers. Service users’ and carers’ voices need to be heard at all levels of the process of setting standards and improving quality. (Harding and Beresford, 1996, p 3) Standard One: Evaluation

Services and support must be audited to ensure that policies and provision offer person-centred support and are underpinned by its values. Policy and practice should be evaluated employing user-defined measures and outcomes and involving service users in the process.

Introduction While our focus is ‘person-centred support’, this is also very much a book about making change. It is concerned with changing the way that people who need support to live their lives, are able to get that support. It addresses the current concern of governments to achieve this. It examines efforts that many people and services are making to work in a different ‘person-centred’ way to achieve this. The book also explores how people can be helped to work better in this way. There has been enormous interest in making change in social care in the UK. Words like ‘transformation’,‘revolutionary’ and ‘fundamental’ change have been used by government, as well as by other policymakers and commentators to signify this. The reform of social care funding emerged as a high profile issue in advance of the 2010 General Election, with competing proposals advanced by the major political parties. The two parties, Conservative and Liberal Democrat, that made up the subsequent coalition government, previously had very different, strongly conflicting approaches to social care. Earlier, the former Labour government had invested more than half a billion pounds, an unprecedented amount, in social care change and set up planning 15

Supporting people

bodies to take it forward, as well as organising large-scale consultations, at national and local levels. The Coalition government then followed a similar path, committing itself to fundamental reform of both social care legislation and funding. Yet change has been a consistent, almost dominant feature of social care for many years – almost since its inception as part of the post Second World War welfare state. It has been the subject of constant, indeed accelerating restructurings and reorganisations. Thus there has been change from the initial welfare and children’s departments of the 1950s, to the social services departments established in the 1970s and then dissolved 30 years later. Social care has been led by different professions, from the welfare and children’s officers first established, through social workers, to the care managers of the 1990s onwards. It has shifted between ‘generic’ and ‘specialist’ professional roles; through the ‘patch’ and ‘community social worker’ and being based in ‘area’ and ‘neighbourhood’ offices. It has been underpinned by radically different ideologies, embracing differing commitments to voluntarist, market and state-led approaches to support. Despite this apparent preoccupation with change, one thing seems to have remained relatively constant. Service users’ experience of social care does not seem to have changed fundamentally. The repeated message from service users over the years has been that social care policy and provision have tended to be unreliable, inadequate and often of poor quality (Harding and Beresford, 1996; Beresford et al, 2005).

The nature of social care Social care has helpfully been defined as: The provision of services to adults who require assistance with aspects of daily living as a result of disability, illness or ageing. Social care is an all-embracing term for the personal social services. (Barton, 2000, p 318) Social care can not only make a claim to have importance for all our lives, it is also a massive industry in its own right. In 2007-08 around 1.75 million people of working age and older people used different care services provided by their local council or purchased on their behalf from private and voluntary organisations (CSCI, 2009, p vi). Including children, over two million people of all ages and from every community, used social care services arranged by local councils during 2006-07 (CSCI, 2008, p 9). As well as working with adults 16

Setting the scene for social care

and children, social care works with those going through the transition from child to adult status. In 2006 there was a radical reorganisation in service delivery in England (although not in Wales or Scotland), which separated adults’ and children’s services into different local departments, subject to different central government departments (Petch, 2008, p 237). This created additional administrative complexities since there are clearly overlaps between adults and children, not least in the case of parents with disabled children and disabled parents. Recent figures show that local authorities spend £14.2 billion on social care for adults. Nearly two thirds of this is spent on older people (61.0%) and nearly a quarter on people with learning difficulties (21.0%). Of the total of more than 1.75 million adults who receive one or more social care service from their councils, just over a million are supported at home with community services. There are also many ‘self-funders’ receiving social care, the proportions varying significantly between different localities. Almost half a million people live in some form of residential institution. In 2007, there were 18,577 registered care homes for adults of all ages, with 441,958 places. It is estimated that the current social care workforce includes 1.5 million workers. The people working in social care form 4% of the national working population and something like 15% of the public sector workforce (Platt, 2003). The majority of the workforce (69.0%) is employed in the independent sector (CSCI, 2008, p 10). ‘Social care’ is a recent arrival as a description for a discrete area of public policy. This may help explain its low level of recognition from public and politicians. Following the creation of the welfare state, the talk was more of personal social services and social work. This terminology has now been significantly replaced by one based on ‘care’, for example, community care, primary care, care in the community, long-term care and now social care. A set of new key organisations were also developed, framed in these terms, including the Social Care Institute for Excellence, the General Social Care Council, Skills for Care and most recently, the Care Quality Commission and National Skills Academy for Social Care. A sub-set of roles and tasks have been developed framed in terms of care, including care management, care planning, care package, extra care housing and care worker.

Making broader connections While social care is now identified as a distinct policy area, it would be a mistake to see it solely as something separate. Not only does it relate to a broader range of policies, but other policies also have 17

Supporting people

a role in providing social support. This includes housing, education and training, income maintenance, employment and of course, health. Workers with social care responsibilities, including social workers, occupational therapists and others are also employed in other policy fields and not only in social care. The need for social care support also does not operate in isolation. It depends on how other policies and services work. For example, if pavements and the built environment are unsafe, then people may be restricted to their homes. If public transport is inaccessible, they may need ‘special’ transport in order to go out. If employment is restricted and inflexible, they may be forced to live on benefits – and so on. Social care has to be seen as part of the whole. There has been an increasing awareness lately on the part of government that social care cannot be treated in isolation and the broader policy context must also be addressed, if people’s rights and needs are to be met in the round. How far this has been achieved is open to discussion. But there is now formal recognition of the issue among policymakers. This is embodied in ideas like ‘place-shaping’ and ‘total place’, where the idea is that local and other authorities should ‘make creative use of [their] powers and influence to promote the general well-being of a community and its citizens’ to improve and integrate local policies and services, developing a ‘whole area’ approach to public services (Lyons, 2007, p 51; Hampshire County Council, 2008, p 75; HM Treasury, 2010).

The problem with social care There can be no question that a major cause of continuing pressure for change in social care, extending to government, is its failure to provide a reliably good service for service users. Social care policy and practice have a crucial role to play in enabling service users to live on as equal terms as others. However, the social care system is still often failing to provide the support that people want, services shaping people’s lives rather than vice versa. Staff providing services are often frustrated and disappointed because they are unable to offer good quality support and valuable resources are wasted because services are failing (NCIL and Shaping Our Lives, 2005). Innovations like direct payments and the Independent Living Fund, have been slow to mainstream the level of choice and independence set out in formal policy. In particular, older people, mental health service users, people with learning difficulties and people from black and minority ethnic communities, have all been shown to experience 18

Setting the scene for social care

additional difficulties in accessing direct payments (see for example, Clark et al, 2004). The prevailing culture of social care appears still to be a serious barrier to developments in independence and control for service users. This is not to say that current staff and other professionals do not, or would not support, such a development, but that they frequently appear to have neither the power nor the knowledge or support to bring it about (Clark et al, 2004). Further evidence of this common inability to adapt practice within social care systems to meet the concerns and demands of the people who use them is provided by the outcomes of most participation schemes. While these have increasingly been required, the extent to which they actually contribute to, or change the system or its plans, is highly questionable (Carter and Beresford, 2000; Carr, 2004). Service planners and practitioners may want to respond to people’s comments and concerns, but frequently find themselves trapped within their own institutional structures, without the experience, power or expertise to change them.

The sustainability of social care Questions are also increasingly being raised about the sustainability of social care. This is first because of the longstanding financial problems social care has faced, but increasingly also because of the uncertain availability of people to provide support. Two main sources of support have been highlighted in recent years; the paid workforce and unpaid ‘carers’ recruited from people’s partners, families, friends and neighbours. In both cases, the expectation is that it is likely to be difficult to maintain them even on their existing scale (see Chapters Four and Five). Yet the demand for social care support looks set to rise enormously.

Increasing demand for social care The social care sector serves the needs of a growing part of the population. The number of people over 85 is projected to grow by 60% in the next 20 years. Alzheimer’s is increasingly being presented as a problem that threatens and should worry us all. The number of people with dementia, 560,000 in 2007, is expected to double in the next 30 years. The number of people aged 50 and over with learning disabilities is projected to rise by 53% between 2001 and 2021. More children with highly complex needs are expected to survive into adulthood. Currently 15.4 million people have a long-term condition. 19

Supporting people

By 2025 there will be 42% more people aged 65 or over. This will mean that the number of people with at least one long-term care condition will rise by three million to 18.4 million (DH, 2008). To meet the demographic pressures the social care workforce needs to grow. Projections by Skills for Care suggest that the size of the workforce required will be between two million and 2.5 million by 2025 (Jacobs, 2008). Additional concerns are raised about the consequences of socalled ‘life-style’ problems, such as obesity (and the rising rate of type two diabetes associated with it), alcohol and drug dependence. Mature onset impairments are seen as having increasing significance internationally in societies, as people live longer. The World Health Organization, for example, has predicted that by 2020 there will be over 690 million people globally over the age of 60 compared with the present 380 million, associated with increased levels of kidney failure, cancer, diabetes, mental health problems and other chronic degenerative diseases (cited in Berube, 2002, p 4). Concerns about social care and increasing demands for support have largely been associated with a focus on the growing numbers and proportion of older and very old people estimated to make up western populations. This seems partly to have emerged because increasing numbers of older people have tended to be framed as a problem, with a particular emphasis on greatly increasing numbers of people with dementia. This predicted demographic trend has been associated with an increasing demand for support both because of growth in numbers, but also the increased length of period envisaged when such older people will need support. But, it should be remembered that these are at best estimates and we do not yet know whether more older people will truly mean longer periods needing support. Some commentators take a different view and suggest that the period when older people will need support will not necessarily get any longer. We can also expect there will be differences according to class and levels of material disadvantage. What we do know though, is that there is a growing need for support beyond older people. Social care’s raised significance is not only due to the so-called ‘demographic time-bomb’ of greatly increasing numbers of very old people and the rising incidence of Alzheimer’s, on which most emphasis has been placed. A number of other factors are massively increasing the numbers and proportions of people with support needs arriving at the doors of social care. These are particularly associated with improvements in medical and health care. Such an increasing demand for social care is likely to be true for both the western and majority/ developing worlds, regardless of whether social conditions improve or 20

Setting the scene for social care

deteriorate. The former will make it more possible to address needs, the latter is likely to create more to be met. We are seeing the conversion of many health needs into support needs for social care. Conditions that might once have been acute or terminal are now increasingly requiring longer-term support. This includes the increased survival of early term babies with impairments and the greater life expectancies of disabled people with both inherited and acquired impairments. It is reflected in the increased length of survival for people with cancer and other previously ‘terminal’ or life threatening illnesses and conditions, increased survival rates from road traffic and other accidents after major trauma, including head injury and growing numbers of people from the armed forces left with major trauma and impairments from military action. There is also growing recognition of the need for social care support upstream of health intervention to prevent people’s deterioration, as well as downstream to stop a medical crisis like a stroke resulting in chronic impairment.

The ambiguity of social care reform One point that does need to be made at this juncture is that while there is consensus that social care cannot continue as it has been and there must be change, what this change will really amount to remains unclear. This is because two parallel issues confront such reform, as they have long confronted social care more generally. These are the issues of quality and cost. This is a longstanding tension in social care. Policymakers not only have to address and resolve problems of quality but also problems with cost. Social care policymakers have long been preoccupied with finding a ‘magic bullet’ that would square this circle, so far without success. At the same time as the New Labour government set in train the radical reform of social care, it also reviewed its funding. At the time, there was also considerable talk of the government seeking to ‘manage people’s expectations’ of social care, which were still high, getting them used to expecting less and making a greater contribution to their own support. The New Labour government highlighted a significant shortfall in future funding based on current estimates. Service users and practitioners particularly expressed considerable concern about whether the primary aim of reform is to improve provision or save money. This ambiguity has long been a feature of social care reform and needs to be acknowledged in any consideration of it. The situation has become even more uncertain since the change of government in 2010 and the imposition of massive

21

Supporting people

cuts in public services and spending (Beresford 2009a, 2009b, 2011; Boxall et al, 2009; Glasby and Littlechild, 2009).

Personalisation The major changes in social care that were planned for the UK, as this book was being written, were framed in terms of the idea of ‘personalisation’ and were part of a broader personalisation agenda that was meant to transform public services, customising them to each individual citizen. Significantly, consistently this move has not only been supported by government, but also by the main opposition parties (HM Government, 2007; Putting People First, 2011). In social care this development was initially presented as synonymous with a move to ‘self-directed support’, which was to be achieved mainly through what were initially presented as ‘individual budgets’. Since then a distinction has also been drawn between individual and ‘personal’ budgets. Individual budgets laid a stress on drawing together different funding sources, including benefits, work and training support and other funding. While the government’s own research identified difficulties in combining different funding streams, this has been at the heart of a further national initiative, the ‘right to control trailblazers’. The term ‘personal budgets’ has been used to describe the money that might be made available directly (or notionally) to the service user first from social care and then also from health. These ‘individual’ or ‘personal’ budgets represent a development of the direct payments pioneered by disabled people as part of the independent living movement. Here the aim is for service users to determine and control the support that they need to live independently, that is to say on as equal terms as possible as non-disabled people. Qualifying service users receive a sum of money to spend, on the basis of ‘self-assessment’, as they wish on their support. More recently, personalisation in social care has been discussed in broader and vaguer terms, to denote a move to more person-centred approaches to support across all services and support arrangements, including residential, day and traditional domiciliary services. The rhetoric is that personalisation will offer service users greater ‘choice and control’. Personalisation is offered as a fundamental departure from a traditional ‘menu’ of care based responses, to a much wider range of possible means of providing support to offer people greater choice and control. These may be: • Mainstream provision, rather than dedicated social care services 22

Setting the scene for social care

• Conventional medicalised provision (for example, for mental health service users) or ‘talking’ and complementary therapies • User controlled support services The emphasis is on people being able to work out imaginative and effective ways of meeting their needs, regardless of what these are. In addition to personal assistance to help with daily living tasks, this can include money to pursue recreation and hobbies and gain skills, to undertake education courses, to have breaks and holidays, to visit friends and strengthen circles of support, to have company or help from a trusted person out of hours, to access a user controlled crisis centre, to pay for a pet, counselling or peer therapy. Some examples have already developed too, of people clubbing together their individual and personal budgets to meet their needs collectively. Both self-directed support and personalisation can be seen as goals to be achieved, rather than methods to achieve them. Yet, so far, in discussions about the reforms intended for social care, the focus has tended to be much more on the detail and processes of the techniques identified to advance these objectives, than the objectives themselves. There has been a tendency to confuse the two – means and ends, process and outcome. Often the two have been treated as if they were synonymous, with individual budgets particularly equated with the achievement of self-directed support. Both the research and the literature have so far been preoccupied with the mechanics of individual budgets, with talk of them as ‘operating systems’ and detailed description of their ‘resource allocation system’ (RAS), as if the issues involved were essentially technical (Poll et al, 2006; Waters and Duffy, 2007; Glendinning et al, 2008; Hatton et al, 2008). In the UK, the policy of moving to personalisation and personal budgets proceeded with great haste and a very limited evidence base. Indeed the government’s own evaluation of individual budgets had barely been established, let alone reported, by the time that it had decided on mainstreaming personalisation and massively rolling out individual/personal budgets (Glendinning et al, 2008). The findings from its own research were both limited and equivocal, although the government itself contested some of them. Service users and others, however, have also raised much broader questions about individual and personal budgets (Beresford, 2008a, 2008b, 2009a), for example, in terms of what conditions they require to work, particularly for a wide range of service users and how these are to be achieved. However, as became even clearer after the 2010 general election, personalisation has gained cross-party support. While the detail of their 23

Supporting people

approach may differ, no government seems to see an alternative to the rhetoric of personalisation. Yet, so far personalisation, whose definition remains vague and unclear has been discussed in rather high-level and generalised terms, for example: Transformation involves moving to a more person-centred or ‘personalised’ adult social care system which emphasises the individual’s dignity, right to self-determination, choice, control and power over the support services they receive. The vision gives greater recognition to the importance of prevention and requires a whole system change. (Hampshire County Council, 2008, p 7) Successive governments have tended to go little further than associate personalisation with increased ‘choice and control’ for service users (DH, 2010).

The Standards We Expect project Beyond detailing the practicalities of individual and personal budgets, which are now seen as only part of personalisation, with their own limitations identified, little has so far been established about how the enormous aims associated with personalisation may be worked out in more detail and how they are to be achieved. We still have to answer these large and fundamental questions. That is the aim of this book and of the project on which it is based, the Standards We Expect project. It is this project we now turn to in the second half of this chapter.

The book’s evidence base This book is evidence-based. It draws on a four-year national project supported by the Joseph Rowntree Foundation (JRF). The Foundation is the largest independent charitable funder of social policy research. The Standards We Expect project, named after an earlier project which explored what service users and carers wanted from social care workers (Harding and Beresford, 1996), was the centrepiece of a new Foundation programme, seeking to support independent living by increasing people’s choice and control over their lives and support. This book also draws on other publications and outputs from that overall programme. Ours was conceived of as a ‘change and development’ project, which would:

24

Setting the scene for social care

• work closely with a number of local services and their users to learn ways of overcoming barriers to person-centred support; • share learning about empowering approaches to support with a wider network; • explore opportunities to bring about change to the existing social care system or point to more radical reform for a better system of support (JRF, 2004). The Standards We Expect project was not envisaged as a research project, despite having research elements, but rather as about ‘making change’ and uncovering wider lessons about what people want and how this could be achieved.

The project team Our consortium’s bid to undertake the project was successful. The consortium included a national service user organisation and network, Shaping Our Lives, two university centres, at Brunel and De Montfort Universities and a voluntary organisation, Values Into Action, where disabled and non-disabled people work together collaboratively. A total of nine individuals were involved. They included people with experience as service users, academics, voluntary project workers, as a current practitioner and with expertise in equality and diversity issues. All had relevant experience in policy and practice change at grassroots and national levels; in involving diverse stakeholders, undertaking evaluation. People knew each other, had worked together in different combinations before and built up respect and trust. While the consortium was an equal collaboration, we saw the project as a service user-led one, in which Shaping Our Lives was budget holder and ‘first among equals’.

The project philosophy Our approach to undertaking this project was a rights-based and participatory one. We said in our bid to undertake the project: Social care policy and practice have a key role to play in enabling service users to live on as equal terms as others. UK social care has a history of frequent restructuring which has not resulted in appropriate support being available for all service users systematically, reliably and equitably, addressing their rights, needs and difference. As implemented, emerging person25

Supporting people

centred approaches to support continue to be marginalised and undermined. (Branfield et al, 2004) Because we believed that their perspectives have historically been marginalised in social care, we placed an emphasis on gaining the views of service users, face-to-face practitioners (people who spent a major part of their time working face to face with service users) and their managers (Fleming and Ward, 2004; Fleming and Hudson, 2009). We thought that their understandings of person-centred support, the barriers it faces and ways in which these can be addressed would be particularly valuable, while often having been overlooked. Thus our aim was to seek these views and enable them to be shared and developed and for these stakeholders to be centrally involved in the process of change which the project was concerned with supporting. We took the view that for change to be truly owned and effective, these constituencies had to be fully involved in it. We envisaged: … enabling stakeholders to engage in the process of change through identifying existing forums and developing a range of new ones, particularly to ensure the involvement of practitioners and service users, making it possible for them to develop, share and negotiate their perspectives and contribute on as equal terms as possible to the change process. This will involve the provision of support, information and training by the project team. (Branfield et al, 2004, p 5) We were anxious to ensure the equal involvement of all service users, including those who tend to be especially marginalised. We knew that this meant working in accessible ways which would support the involvement of a wide range of service users. We took inclusion to include addressing issues of difference in terms both of gender, ethnicity, belief, sexuality, age, disability and so on and also in terms of ensuring the inclusion of groups often identified as ‘hard to reach’ or as ‘seldom heard voices’. Starting with service users’ and practitioners’ own definitions and conceptions our aims and objectives were to: • identify the barriers that operate against person-centred approaches, preventing people who use services from taking control of their own lives; • identify the techniques and methods which enable and promote person-centred approaches and empower service users and workers; 26

Setting the scene for social care

• share knowledge and expertise to facilitate the development of services that people want; • identify structural issues and problems and suggest possible solutions. In this way, we aimed to provide a basis ‘for implementing measures to support the valuing and rewarding of policy and practice for personcentred policy and practice and user involvement’ (Branfield et al, 2004, p 6). As part of our commitment to the change-making elements of the project, we wanted to explore both bottom-up and top-down approaches to change, while being conscious of the importance of service user and practitioner ownership of change. We were committed to producing a range of outputs which would support the practical and theoretical, practice and policy development, of person-centred support and which would assist service users, practitioners and managers, as well as other key actors concerned, to take forward this new approach to social care services and support.

Services taking part in the project The 20 services that took part in the project were selected by the Joseph Rowntree Foundation, again after an open call for possible collaborators. There were eight partner projects with whom we worked closely. We have changed their names to preserve anonymity. Here are brief pen portraits of them. The partners Pippin Close young persons’ unit, is a 10-bedroom residential home for 16- to 24-year-olds, run by a large charitable organisation, providing 24-hour nursing and support for young people with physical impairments. Located on the outskirts of a market town, the aim is to provide a safe and stimulating environment for young people in their transition to adulthood. The unit is purpose-built throughout and opened 18 months before our project to support and encourage people to live more independently. It is on the same site as a residential unit for disabled adults aged 25 and above, run by the same charity and six accessible flats for disabled people, who want to live more independently. Grandshire is a large rural county. County council day services support adults with physical and/or sensory impairments. The project focuses on two closely linked elements of this service. These are the 27

Supporting people

Barry Centre, originally a day centre for disabled people of working age in the county’s largest city, Largetown, which is working to become an inclusive resource for local people. The team includes disability development workers (DDWs), based across the county, working locally to increase the life chances of disabled people. Day service officers (DSOs) are based at the day centre and work with service users managing it, to promote centre use by disabled and non-disabled people. Downhampton is a large town with a long industrial history. The local council is working with the local National Health Service primary care trust (PCT), to improve services for adults with learning difficulties from minority ethnic communities. There has been a very low takeup of services in this group. The work is led by a sub-group of the local learning disability partnership board. The three main elements of their strategy are: • support for family carers, through a carers’ group, especially for non-English speakers; • a self-advocacy and support group for people with learning difficulties from minority ethnic communities; • a local authority access team encouraging more ‘person-centred’ support so minority ethnic service users and carers are better able to access mainstream services. Camchester National Health Service primary care trust serves a large northern city in England. Our project focused on its work on decisionmaking in end of life care for people living in nursing and residential homes, looking at where they wanted to die and how they could be supported in their decisions. The local project was led by a steering group made up of representatives from the local hospital, primary care trust, adult care department, independent nursing and residential homes and carers. We carried out a research project involving five residential and nursing homes in the city. New Chance is a medium sized and well established national charity that offers day services and support to people living in their own accommodation or housing it provides. Groups it supports include mental health service users, people with learning difficulties,‘vulnerable’ families, young lone parents, people with substance misuse problems and homeless people. In recent years it has introduced person-centred planning (PCP) across its services, rolling out training for its staff. Our project focused on its work in a single region of the UK. My Roof Housing is a national charity providing care homes, housing and support services to 8,500 older people throughout 28

Setting the scene for social care

Britain. Our project focused on their care centre at Parr Grove in a large city. This consists of an extra care housing development of 70 apartments with communal facilities, part of which is reserved for older people with dementia, as well as a dementia day care centre. The centre is purpose built and opened two years before our project. Support is provided through 24-hour staffing, offering general and dementia care. Middleshire is a large rural county in the UK. A big city is the focus of many activities but the size of the county, which includes many remote areas, makes travel difficult. An informal network of organisations and individuals has come together to promote personcentred planning. The network focuses on people with learning difficulties, but also works with a wide range of other service users including people with physical impairments and mental health service users. It is also exploring using person-centred approaches with other groups, like school-leavers. The network meets regularly and has hosted awareness-raising and training events. Members include people with learning difficulties and experience of person-centred planning, a housing association, an employment support service, the local careers service and the local authority learning difficulties service. The Glen Trust is a charity in the town of Wendlebury which provides housing, care and support for ‘vulnerable adults’ and older people. Our project focused on the re-provision of services for people in its four residential homes for adults with learning difficulties and physical impairments. These homes were established to offer innovative support. They have been open for more than 20 years and do not reflect current ideas of good practice. The trust plans to replace them with smaller, more independent housing and is seeking local authority co-operation to do so. It has been using person-centred planning in the homes for several years and has engaged external consultants to work with service users about future housing and support.

The range of services overall A further 12 services were involved in our project, making up a broader network for learning and sharing. The 20 participating sites covered a wide variety of partnerships and services. This ranged from residential and day provision, to community-based services, for example, support with employment, housing and information technology. They included respite care, outreach and development work, advocacy, advice and social work support. They included black and minority ethnic as well as mainstream organisations and groups. They varied in scale from a small residential unit, to a network of service providers working with 29

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hundreds of service users; from large-scale psychiatric provision, to supported housing. A very wide range of service users were involved, including young and older people, people from many different backgrounds, members of black and minority ethnic communities, people with varied physical and sensory impairments, with learning difficulties, with life limiting illnesses, people who were homeless, with drug and alcohol problems and who used mental health services. They included involuntary as well as voluntary users of services. Services came from the statutory, independent and voluntary sectors and some included agencies from more than one sector. They included health and local authority organisations, but not directly any user controlled ones, as unfortunately none had applied to be part of the project. Their histories and approaches towards person-centred support varied. Some of the partners saw themselves as at the forefront of innovation and the implementation of person-centred support. Others were seeking to overcome particular problems or to modernise their approach. They ranged geographically from the north of Scotland to the south west of England and included urban, metropolitan and rural areas.

Carrying out the project To achieve our aims for the project we began by working closely with the eight partners (see Appendix One for more details). A member of the consortium team together with the project worker took responsibility to link and work with each partner. The main activities we undertook included: • Organising a series of meetings over the life of the project with all partner sites, with service users, practitioners and managers, exploring with them what they wanted from the project and their views and ideas about person-centred support, the barriers facing it and how these could be overcome. We then reported back to partners, agreeing feedback and synthesising findings from the eight sites. • First get-together: organising a one-day forum to bring together service users, practitioners and managers from all 20 services to share and discuss their experience in their different sites, to gain a shared understanding of person-centred support and the issues it faces. • Empowerment training: on the basis of priorities identified by participants at the get-together, developing and delivering a programme of training and capacity building for each constituency, 30

Setting the scene for social care

service users, practitioners and managers, to support the development of person-centred support, as well as organising a seminar focusing on making change for the consortium team. Training was user-led and built on the learning from the project and the needs identified by sites. Some partners also identified and agreed with us specific development work that they wanted us to support them with. This was carried out and included, for example, undertaking research to provide evidence, producing reports, offering training, holding meetings and supporting self-advocacy. • Second get-together: this again brought the partners and broader network together to share, discuss and develop the findings from the project. They also discussed key lessons they had learned from the project for taking forward person-centred support and how such a person-centred approach could be supported and successfully taken forward locally and nationally.

Our research approach While the project was not a narrowly research based one, it did include a significant research element. We saw our research approach as a participatory one, based on qualitative methods. Generally speaking, three approaches to user involvement research are identified. These are: • user involvement in research, where service users are involved in a project without necessarily playing a part in shaping its focus, questions, methodology or methods; • collaborative research, where service users and non-service user researchers and/or their organisations jointly initiate and develop a research project; • user controlled research, where service users and/or their organisations jointly initiate run and control research (Beresford, 2007). As has been said, the consortium team was a collaboration between different organisations and stakeholders. While our research project was therefore in one sense a collaborative one, it was also closely consistent with a user controlled research, as generally understood (Turner and Beresford, 2005). The project was led by a user controlled organisation. It held the budget and shaped and submitted the original application. At the same time, the overall project was jointly and democratically managed by the consortium of four organisations, which also included two university centres and a voluntary organisation where disabled and 31

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non-disabled people work jointly together. Service users were closely involved, both as members of the consortium team and as participants in the project, in all its aspects, from shaping its final focus, through to its analysis, production of outputs, dissemination and it is intended, follow-up action. This book draws very heavily upon what participants in our project had to say. We place particular value on their first hand comments and accounts. Their quotes make up a major part of the core text. In general, for simplicity’s sake and to minimise the risk of people being identifiable, we have only mentioned whether they were a service user, carer, manager or practitioner when quoting them. We have retained details of the origins of all comments and quotations and can trace and confirm them. In those few cases where we are unable to identify particular individuals and have indicated that their source is ‘unknown’, this is because they originate from transcripts of group discussions that took place at the two get-togethers we held, which brought different stakeholders and sites together.

Evaluation There were two related aspects to evaluation in the project and we sought to address both. First was evaluation of the activities and responses of partners and second of the project which we were carrying out, to analyse and check its methodology and methods, strengths and weaknesses. Both activities were ongoing, with regular feedback to partners and the wider network. We identified a series of data streams for evaluation and sought to gather information in a systematic way.

Ethical issues In undertaking the project, we were anxious to follow good practice for ethical research, for example, seeking to ensure participants’ effective involvement, providing full, accurate and accessible information and safeguarding confidentiality and anonymity (Faulkner, 2004). The project also had an advisory group established by the Joseph Rowntree Foundation and was also supported by a reference group for the Foundation’s overall Independent Living programme, made up of service users. What was outside our control, however, were existing ethical procedures and these constrained our research in two unhelpful ways, first restricting user involvement at its beginning and then creating major delays in undertaking research requested in one of the partner sites. We also faced problems in paying people for their 32

Setting the scene for social care

involvement because of the practical problems involved and current inconsistencies between government participation and benefits policies (see Appendix One). We saw the kind of research approach we adopted as one based on qualitative rather than quantitative methods. The aim of the development aspects of the project was to engage with people directly and collaboratively, rather than in more directive and formalistic ways. Relatively large numbers of people were involved in our project and underpin this book’s findings. It is difficult to be precise about overall numbers, because people were involved in more than one way and there were clearly overlaps. However, nearly 250 people were directly involved at the eight local sites; more than 100 took part in capacity-building training; over 100 from the broader network of 20 organisations came to our get-togethers and hundreds took part in local meetings, contributed information or made contact with us. We also know that participants were highly diverse. So we know that in reporting our findings in this book, we are drawing on a large and diverse body of first hand knowledge and experience about supporting people and person-centred support.

Summary This chapter sets the scene both for social care and this book. It highlights the centrality of ‘change’ in social care; the constant efforts to make change and the failure as yet to bring about substantial reform in line with what service users say they want. It looks at the nature, significance and data for social care, while considering its broader relationships with public policy and society. It examines the fundamental problems that have continued to affect social care policy and the problems of sustainability raised in relation to an increasing demand for ‘care’, relating to a wide range of demographic, social and medical developments and a diminishing supply of paid and unpaid ‘carers’. The longstanding ambiguity of social care reform is also explored. Is its purpose to meet needs better, or contain cost? The idea and practice of personalisation are introduced and their central importance in current social care discussions and developments signposted. The second half of the chapter introduces the project which provides the evidence base for the book, the Standards We Expect project. This was conceived as a national ‘change and development’ project. It was carried out by a user-led consortium working with a network of services, in eight specific sites and included a diverse range of services 33

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and service users. The project focused particularly on the perspectives of service users, practitioners and managers, reaching out to identify their understandings of person-centred support, the barriers it faces and how these might be overcome, in order to develop services better suited to deliver person-centred support. The chapter briefly sets out the project’s rights-based philosophy, how it was carried out, its emphasis on inclusion and diversity, its participatory approach to research and the ethical issues it faced. References Barton, R. (2000) ‘Social care’, in M. Davies (ed) The Blackwell encyclopaedia of social work, Oxford: Blackwell, pp 318-19. Beresford, P. (2007) ‘The role of service user research in generating knowledge-based health and social care: from conflict to contribution’, Evidence & Policy, vol 3, issue 4, pp 329-41. Beresford, P. (2008a) ‘Time to get real about personalisation’, Guest Editorial, Journal of Integrated Care, vol 16, no 2, April, pp 2-4. Beresford, P. (2008b) ‘Personal budgets must avoid one size fits all’, Second Thoughts, Guardian Society, 23 January, p 4. Beresford, P. (2009a) Self-directed support: If we are going to do it, let’s do it right, Report of a day conference organised by the London SelfDirected Support Forum, London: London Self-Directed Support Forum. Beresford, P. (2009b) ‘Social care, personalisation and service users: addressing the ambiguities’, Research, Policy and Planning, vol 27, no 2, pp 73-84. Beresford, P. (2011) ‘Society’s hidden have found their protesting voice’, Second Thoughts, Guardian Society, 5 January, p 4. Beresford, P., Shamash, O., Forrest,V.,Turner, M. and Branfield, F. (2005) Developing social care: Service users’ vision for adult support (Report of a consultation on the future of adult social care),Adult Services Report 07, London: Social Care Institute for Excellence in association with Shaping Our Lives. Berube, M. (2002) ‘Sideshows and backbends’, in L.J. Davis (ed) Disability, dismodernism and other difficult positions, NewYork: NewYork University Press, pp 1-8. Boxall, K., Dowson, S. and Beresford, P. (2009) ‘Selling individual budgets, choice and control: local and global influences on UK social care policy for people with learning difficulties’, Policy & Politics, vol 37, no 4, October, pp 499-515. Branfield, F., Collins, J., Beresford, P. and Fleming, J. (2004) Proposal registration form:The Standards We Expect, London: Shaping Our Lives. 34

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Carr, S. (2004) Has service user participation made a difference to social care services?, London: Social Care Institute for Excellence. Carter,T. and Beresford, P. (2000) Age and change: Models of involvement for older people,York:York Publishing Services for the Joseph Rowntree Foundation. Clark, H., Gough, H. and Macfarlane,A. (2004) ‘It pays dividends’: Direct payments and older people, Bristol/York:The Policy Press for the Joseph Rowntree Foundation. CSCI (Commission for Social Care Inspection) (2008) The state of social care in England 2006-07, London: CSCI. CSCI (2009) The state of social care in England 2007-08, London: CSCI. DH (Department of Health) (2008) Putting People First, Adult social care workforce strategy interim statement, London: DH. DH (2010) A vision for adult social care: Capable communities and active citizens, November 10, London: DH. Faulkner, A. (2004) The ethics of survivor research: Guidelines for the ethical conduct of research carried out by mental service users and survivors, Bristol: The Policy Press. Fleming, J. and Ward, D. (2004) ‘Methodology and practical application of the social action research model’, in F. Maggs-Rapport (ed) New qualitative research methodologies in health and social care: Putting ideas into practice, London: Routledge. Fleming, J. and Hudson, N. (2009) ‘Young people and research: participation in practice’, in J. Wood and J. Hine (eds) Work with young people: Theory and policy for practice, London: Sage Publications, pp 114-27. Glasby, J. and Littlechild, R. (2009) Direct payments and personal budgets: Putting personalisation into practice (2nd edn), Bristol: The Policy Press. Glendinning, C., Challis, D., Fernandez, J., Jacobs, S., Jones, K., Knapp, M., Manthorpe, J., Moran, N., Netten,A., Stevens, M. and Wilberforce, M. (2008) Evaluation of the Individual Budgets Programme, Final report, IBSEN (Individual Budgets Evaluation Network), October, York: SPRU (Social Policy Research Unit), University of York. Hampshire County Council (2008) Getting personal: A fair deal for better care and support,The report of Hampshire County Council’s Commission of Inquiry into personalisation and the future of adult social care, Winchester: Hampshire County Council. Harding,T. and Beresford, P. (eds) (1996) The Standards We Expect:What service users and carers want from social services workers, London: National Institute for Social Work.

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Hatton, C.,Waters, J., Duffy, S., Senker, J., Crosby, N., Poll, C.,Tyson,A., O’Brien, J. and Towell, D. (2008) A report on In Control’s second phase: Evaluation and learning 2005-2007, London: In Control. HM Government (2007) Putting People First: A shared vision and commitment to the transformation of aduclt social care, 10 December, London: The Stationery Office. HM Treasury (2010) Total place: A whole area approach to public services, London: HM Treasury and Department of Communities and Local Government, March. Jacobs, N. (2008) ‘State of adult social care workforce report: 2.5m staff needed by 2025’, 29 February (www.communitycare.co.uk/ Articles/2008/02/29/107452/adult-social-care-workforce-needsto-grow-by-more-than-a-million.html). JRF (Joseph Rowntree Foundation) (2004) JRF call for expressions of interest: ‘The Standards We Expect’: Solutions – Developing person-centred approaches,York: JRF. Lyons, M. (2007) Lyons Inquiry into local government: Place-shaping: A shared ambition for the future of local government, London:The Stationery Office (www.communities.gov.uk/documents/localgovernment/ pdf/158064.pdf). NCIL (National Centre for Independent Living) and Shaping Our Lives (2005) Independence, well-being and choice: Service users’ response to the Green Paper on the future of adult social care in England, Report of a national consultation, London: Social Care Institute for Excellence, NCIL and Shaping Our Lives. Petch, A. (2008) ‘Social work with adult service users’, in M. Davies (ed) The Blackwell companion to social work (3rd edn), Oxford: Blackwell, pp 236-50. Platt, D. (2003) 12th annual report of the Chief Inspector of Social Services, London: Department of Health. Poll, C., Duffy, S., Hatton, C., Sanderson, H. and Routledge, M. (2006) A report on In Control’s first phase 2003-2005, London: In Control (www.in-control.org.uk/). Putting People First (2011) Think Local, Act Personal: A sector-wide commitment to moving forward with personalisation and community-based support, London: Social Care Institute for Excellence/Putting People First. Turner, M. and Beresford, P. (2005) User-controlled research: Its meanings and potential, Final report, London, Brunel and Eastleigh: Shaping Our Lives, Centre for Citizen Participation, Brunel University and Involve.

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Waters, J. and Duffy, S. (2007) Individual budget integration:An exploration of the possible scope of individual budgets, A report for the Department of Health by In Control, London: In Control.

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two

Person-centred support I’m beginning to worry we’re creating another fashion. People talking about personalisation who know nothing about it. We need to take a step back to develop and be clear about definition and to do a hearts and minds, service users and carers, workers and general public. (Ivan Lewis, Minister for Social Care, Seminar, Launch of Institute for Public Policy Research report, 3 June 2008) Standard Two: A person-centred value-base

Services and support should be underpinned by the core values of person-centred support. This includes the values of independent living, the social model of disability and a rights-based approach to providing support and meeting people’s needs. Services must address issues of equality and diversity and be accessible and inclusive.

Introduction This chapter focuses on the idea and practice of person-centred support. This is the central focus of this book and indeed of contemporary social care policy. There is little agreement or clarity over terminology in this field, which is one which abounds with jargon. The dominant term used to describe proposed new developments in and beyond social care, as we have indicated, is ‘personalisation’. It originates in a government Green Paper of 2005 (DH, 2005). Yet in a very short time, from being a new piece of jargon, it has come to be offered by government as the guiding principle for the future of social care and indeed of other public policies (HM Government, 2007). It has had cross-party support and survived government change to remain a focus for social care policy (Putting People First, 2011). At its heart personalisation seems to be used to mean tailoring the service or support to the individual citizen or service user. While, as we have said, its definition remains vague and unclear, in social care it appears 39

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to serve as a synonym for person-centred support. It is this latter term that we will mainly be using in this book although we see the two terms as having significantly shared meanings. In this chapter we will look at the origins of the idea and practice of ‘person-centred support’, but focus particularly on the meanings that service users, practitioners and managers now seem to attach to it.

The origins of person-centred support While personalisation is a term which has been highlighted by government, is heavily politicised and may have a limited life-span, person-centred support has more substantial roots in social care. It is probably best understood as originating as a reaction against the prevailing nature of social care policy and services. Social care and its earlier equivalents have undergone many restructurings and reorganisations. The old Poor Law gave way to the new Poor Law in 1834. This was based on principles of ‘less eligibility’ – imposing conditions worse than if you managed on your own and ‘deterrence’ – making people go into the workhouse to get any help. The welfare state put an end to the Poor Law in 1948 (although it persisted in some senses in the field of social care) and was based on the philosophy of ‘universality’ – help from the state for all who needed it. Margaret Thatcher’s ‘new right’ governments heralded a new approach, with the state no longer the provider of services, but instead the purchaser of them, while service users increasingly paid for their services, either directly as ‘self-funders’ or by being funded to through the state. Social care, however, has never been a monolithic state service. There has always been a strong charitable sector as well as private provision (Glasby, 2008). Over the years, social care had been shaped by a variety of different philosophies. This includes the utilitarianism of the Poor Law, the redistributive state welfarism of post-Second World War governments, the consumerism and new right politics of Thatcherism, the ‘third way’ of New Labour, which was intended as a remix of state and market intervention and then the ‘new politics’, in times of severe economic difficulty, which followed its electoral defeat. Yet there has been a remarkable consistency in the experience of social care service users over the years. This is not to say that the cruelty and punitive regime of the new Poor Law has persisted undiluted into the 21st century. This would be a very false comparison. Yet many of its characteristics have continued significantly to be present. These include an emphasis on:

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• • • • • •

people’s rigid categorisation segregation congregation mere physical maintenance batch living – having to do things together, the same way standardised routines

There have been some significant changes. However, social care has continued to be strongly influenced by its Poor Law past and also the conceptualisation of the people with whom it works as separate, dependent and in some cases deviant or pathological. Elements of social control have also long persisted. These have occurred both where there have been provisions to restrict the rights and freedom of service users and where such a culture has seeped into what were meant to be support functions, with both formal and substantive restrictions being placed on what people can do, where they can go, their privacy and on their relationships with each other. While the size, location and nature of social care’s institutional responses have varied, these have played a consistently significant role in it. From large to small institutions; from rural and suburban institutions to inner-city institutions; from residential to non-residential institutions. Service users sometimes comment that the rigid and impersonal way in which domiciliary care is provided, can make living in their own home feel like living in an institution (Beresford et al, 2005; Branfield et al, 2005). Perhaps the most important development there has been in traditional social care has been the move towards people remaining in, returning to, or moving to their own homes. One of the most significant innovations that made this possible was the development of the role of ‘home help’ in the 1950s and 1960s, a role originally intended to offer support to mothers with new born children, then increasingly offered to older and other disabled people. More recently, however, with the increasing commodification of care following the community care reforms of the early 1990s and the shift in emphasis to private agencies providing ‘care’ and service users paying for it, service users have reported an increasingly inadequate and institutionalised system of ‘domiciliary care’. They talk of workers whose role is increasingly restricted to include only physical maintenance, rather than embracing social support. They often refer to a ‘succession of strangers’ entering their homes to describe constantly changing agency staff they barely know, who intervene in their lives in intimate matters, sometimes without proper privacy, respect or sensitivity. 41

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Thus social care has been seen essentially as a service-led system, where service users must fit into what provision there is, rather than this being tailored to respond to their particular needs, wants and circumstances. Thus pressure towards user-centred support can be seen as a reaction against this status quo. Now the focus is on the service user and what most helps them to live their life autonomously to the fullest degree possible. Two key developments emerged to challenge the traditional system and the approach it embodied. These are ‘person-centred planning’ and direct payments/independent living. They are themselves very different, developing different philosophies, world views and relating to different ideologies. A brief examination of them offers us an invaluable way in to understanding the historical basis of interest in person-centred support, as well as the potentially different ways in which it may be taken forward.

Person-centred planning ‘Person-centred planning’ (PCP) can be seen as one of the expressions of the normalisation movement developed internationally by nondisabled people from the 1970s, particularly in relation to people with learning difficulties. Normalisation, or ‘social role valorisation’, was concerned with challenging the marginalisation and segregation of people with learning difficulties in society, aiming to enable them to live an ‘ordinary life’ participating in mainstream society with valued relationships, rather than restricted to a service system (Race, 2002, 2003). While its advocates were not insensitive to the barriers and discrimination facing people with learning difficulties, their emphasis has been on enabling them to be part of the existing world, rather than seeking to change this. More recently person-centred planning has been applied to a wider range of service user groups. Person-centred planning can be seen as both a philosophy and a set of techniques (Robertson et al, 2005). At the heart of it is a shift away from conventional social care services: … by ‘person-centred’ I mean we have to move away from massproduced services. Services that too often created a culture of dependency and move towards a future that seeks to develop the potential that is in every single individual. (Dowling et al, 2006, p 1)

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Reviewing the literature of person-centred planning in social care, Sandra Dowling and her colleagues say that it: … is at the heart of much recent policy relating to the provision of social care services. It refers to a family of approaches aimed at enabling people who use services to plan their own futures and to get the services that they need. (Dowling et al, 2006, p vi) Helen Sanderson describes person-centred planning as: … a process of continual listening, and learning; focused on what is important to someone now, and for the future; and acting upon this in alliance with their family and friends. It is not simply a collection of new techniques for planning to replace Individual Programme Planning. It is based on a completely different way of seeing and working with people with disabilities, which is fundamentally about sharing power and community inclusion. (Sanderson, 2000, p 2) According to Cole and others: Person centred planning is a process that finds out what an individual wants to do with his/her life, helps the person decide on goals and then plans what action needs to be taken to achieve those goals. It is an ongoing process which means that the person can regularly set new goals as his/her skills and experience grow and ambitions change. The core principle in all of these methods [of person-centred planning such as PATH, ELP etc.] is to look at the whole person rather than viewing them as a series of ‘needs’ – such as for residential, day or leisure services – and to consider all aspects of a person’s life including friendships and relationships. The focus on each person as a unique individual is particularly important for people living in group residential provisions where the wishes and needs of the many can overshadow that of an individual. (Cole et al 2000, p 30) The government’s guidance for Valuing People, the initiative intended to improve policy and provision for people with learning difficulties is centrally based on principles of person-centred planning and describes it as:

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… a process for continual listening and learning, focused on what is important to someone now and for the future, and acting upon this in alliance with family and friends. This listening and learning is used to understand a person’s capacities and choices. Person centred planning is a basis for problem solving and negotiation to mobilise the resources necessary to pursue the person’s aspirations. These resources may be obtained from a person’s personal network, from service agencies or from a range of non-specialist and non-service sources. (DH, 2002, p 2)

Independent living Jenny Morris, the disabled feminist and independent disability consultant, wrote of independent living: The independent–living movement in Britain has its roots in disabled people’s attempts to leave residential care…. It was the benevolent paternalism of the voluntary-sector residential homes set up in the 1950s which provided the context for demands from residents that they have more control over their lives and the establishments in which they lived. (Morris, 1993, p 17) She described the movement as being based on four beliefs: • That all human life is of value; • That anyone, whatever their impairment, is capable of exerting choices; • That people who are disabled by society’s reaction to physical, intellectual and sensory impairment and to emotional distress have the right to assert control over their lives; • That disabled people have the right to participate fully in society. (Morris, 1993, p 21) Thus the philosophy of independent living was developed by disabled people and the disabled people’s movement and can be seen to have grown grow out of the social model of disability which they pioneered. The social model of disability draws a distinction between an individual’s perceived impairment ‘physical, sensory or intellectual’ and disability, meaning the negative societal reaction to such impairment. Developing discussion has explored the interactions between impairment and disability and the barriers disabled people experience from society, including attitudinal, physical and communication barriers. Such

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‘barrier based’ approaches to understanding are now being related to a widening range of social care service users (Thomas, 2007). Independent living is a rights-based philosophy based on the achievement of disabled people’s full human and civil rights. Two interrelated aspects of independent living are highlighted. These are first ensuring people the support that they need under their control to be able to live their lives as fully as they can, on as equal terms as possible, with non-disabled people. Second, equalising their access to mainstream policy and services, like housing, health, education, recreation and employment. The philosophy of independent living turns traditional notions of independence on their head. It is not preoccupied with the individual or narrow ideas of personal autonomy. It does not mean ‘standing on your own two feet’ or managing on your own. Instead of seeing the service user as having a defect or deficiency requiring care, it highlights the need to ensure service users have the support that they need to live their lives on as equal terms as possible. This support is not expected to come from family members required to be informal carers. Simon Brisenden, pioneer of the UK disabled people’s movement wrote that independence means that: People have control over their lives, not that they perform every task themselves. Independence is not linked to the physical or intellectual capacity to care for oneself without assistance; independence is created by having assistance when and how one requires it. (Brisenden, 1989, p 9; see also Brisenden, 1986) Independent living replaces the idea of ‘care’ with that of support. Service user movements have tended to be critical of the concept of care. They see it as imposing a framework which subordinates them, implies they are incapable and subjects them to control. The government’s 2008 Independent Living Strategy signed up to the values of independent living (Office for Disability Issues, 2008). The disabled people’s movement crucially developed ‘direct payments’ as the means of accessing people to the support they want under their control. Direct payments offer service users a sum of money in line with the philosophy of independent living to purchase the support they prefer. This can include employing their own personal assistants. Writing in 1996, Mike Oliver, the disability academic and activist said that evidence already:

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… suggests that independent living schemes are not just morally desirable and professionally appropriate, but they also offer the possibility of providing more cost effective and efficient services through switching from the overproduction of welfare services that people don’t want or need and the underproduction of those that they do, to a situation where the services that are produced and purchased by statutory providers are precisely the services that users want and need. (Oliver, 1996, p 61)

Definitions of person-centred support Although terms like ‘person-centred care’ and ‘support’ and ‘personalisation’ have gained significant currency in social care, there seems to have been only a limited attempt to define them. As has been seen, there has been extensive writing about and defining of person-centred planning which has sometimes tended to be treated – but erroneously in our view – as a synonym for person-centred support. The first, person-centred planning, rests on a very specific philosophy and has a particular history which can be traced. The second, person-centred support is a more general term which seeks to describe a broader approach committed to self-development and self-determination and being ‘user-centred’. In Promoting person-centred care at the frontline (2006) Innes, Macpherson and McCabe focus on experiences of ‘front-line’ workers and the views of service users relating to person-centred care. At key points they use the two terms ‘care’ and ‘support’ interchangeably. They say: The term ‘person-centred care’ is mentioned frequently in the older people literature, particularly in dementia care, although the working definition of the concept is not always explicit (p5).... Vernon and Qureshi (2000) found that definitions of quality of care differ between service users and professionals. Service users’ main concern is what the service does for them and how it is delivered (for example, if the behaviour of the carer is empowering). They also want control over the type of service received, particularly the timing of tasks and who provides the service. (p 13) Face to face workers quoted in the study say: If you are being person centred then you will focus on what is important to them; it’s not just their care needs it’s also their 46

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social needs, their emotional needs, their family needs. It is everything. (p 8) To treat someone as you would wish to be treated – someone like me to look after me. (p 8) The authors conclude that McCormack’s (2004) definition of being in relation, being in a social world, being in place and being with self can be linked to the three attributes of good-quality care, that is: the involvement of the service user; taking into account users’ needs/views; and the provision of flexible and responsive services. (Innes et al, 2006, p 23) This highlights the importance of support taking into account the person as an individual in the context of their particular relationships and social setting. Although the term ‘person-centred care’ may not be used, there is a general consensus that person-centred or quality care is care that: • • • •

is focused on clients/users promotes independence and autonomy rather than control involves services that are reliable and flexible and chosen by users tends to be offered by those working in a collaborative/team philosophy.

Person-centred support: what people say One of our key concerns in exploring person-centred support was to find out what the term meant to people likely to be most directly affected by it; that is, service users, face-to-face practitioners and managers. This is the first time, to the best of our knowledge, that such a systematic attempt has been made to explore its definition from their perspectives. While it is sometimes suggested that these constituencies may have strongly differing views on the subject, we found a broad consensus between service users, practitioners and managers about what is meant by person-centred support. Service users and practitioners, however, did tend to attach a different emphasis to its different elements or components.

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Person-centred support: values not techniques It quickly became apparent that for most people, person-centred support is essentially a value-based idea. Many of the people we spoke to, service users, practitioners and managers, made it clear that for them person-centred support could only exist in a sustained and effective manner when it was underpinned by certain core values, like inclusion, respect, independence and personal choice. They saw person-centred support as a way of working based on certain beliefs about the rights of service users and the values needed to achieve them. They understood it as at heart a value-based approach to practice and support. Dowling, Manthorpe and Cowley describe values in terms of the culture of a service: The culture of a service can be regarded as bringing together the underlying guiding principles that govern the way in which it is run and how support is delivered. It steers the development of relationships between users and providers, and is often evident in the ways in which frontline staff interact with users and deliver the service. (Dowling et al, 2006, p 37) People drew a strong distinction between a value-based approach and a technique or system of working, seeing person-centred support very much as the former. In discussions about personalisation and individual budgets, the dominant discussion has tended to focus much more on techniques and processes. Individual budgets, for example, have been offered by their advocates as a ‘new operating system’, with the main emphasis placed on the process and stages involved and ‘how to do it’ (Hatton et al, 2008) Participants spoke of person-centred support as a way of thinking or something that comes from the heart. They stressed that for them it was an approach rather than a set of procedures or techniques. To me you get it here [speaker pointing to her heart] or not. Manager It’s not another job, it’s the job. Person-centred support is not another thing that you have got to do, it is what you have got to do. Practitioner I still don’t think people get it. I remember seeing a person-centred plan four or five years ago that had been written by a day service 48

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for [disabled] people and it was the most un-person-centred piece of paper I’d ever seen in my whole life. You know, it was like a school report, you know, ‘X behaved well in this lesson.’ It was vile, and all they’d done was stick a piece of paper on the front that said, you know, ‘Jo Bloggs person-centred plan’ and that’s all it was. It was awful, and I don’t actually think we can have moved on very far from it. I’m sure people have in some areas but I think there’s a huge proportion who don’t get [it] … They might get all the terminology, you know, we know what a person-centred plan is supposed to include because we read the book. Manager

The use of language Many service users, practitioners and managers were concerned about the use and often abuse of language in social care. There was a strong feeling that terms coined by the disabled people’s movement were being appropriated by the service system for its own ends. Some service users said that services adopted such language to appear more person-centred, while still lacking the underlying values and approach. They referred to the misuse of words like ‘independence’, ‘individual’, ‘control’ and ‘involvement’, where the philosophy underpinning it was lost or abandoned. There’s a lot of lip-service paid to person-centred support. Practitioner And I think as far as managers are concerned, person-centred care, planning, etcetera, is such a big thing now, they have to buy into it, you know. If they weren’t seen to be taking it on board then I don’t know what social services would think about it, because everybody’s talking about it. Not known Every aspect of what we do is guided by the person. Not by the parents, not by anybody else – by the person. A lot of people say that they do it but we put it into practice. Practitioner

Participants were clear that just taking on the language of personcentred support would not result in services that were genuinely personalised. They saw values as forming the foundations on which a service was built. Without them, they felt the service lacked integrity. They suggested that core values support the day-to-day decisions and ways of working that make services person-centred. 49

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Key components of person-centred support When we asked people what person-centred support meant to them, a series of value-based components emerged. These provided the basis for their definition of person-centred support. These elements included: • • • • • • • • •

putting the person at the centre treating service users as individuals choice and control for service users setting goals the importance of the relationship between service users and practitioners listening to service users up-to-date, accessible information about appropriate services flexibility a positive approach.

Putting the person at the centre The most frequently identified characteristic of person-centred support was putting the person at the centre of services. This fits closely with the whole ethos underpinning personalisation – ‘starting with the person rather than the service’ (Jones, quoted in Carr, 2008, p v). As service users and practitioners put it, person-centred support means: Being at the centre of your service. Service user We tailor everything to the individual. Practitioner Your mind is focused on the client, what they want. Whatever care you give is centred on the client you are working with. Practitioner The client should be the central person, by setting up a plan, looking at where they are now, their journey, dream and goals. Practitioner It’s giving someone the care for their needs, but revolving around them and what their needs are to maintain their daily living and promote independence for them. Practitioner

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Members [users of the day centre] come first, they are listened to, respected, treated with dignity. We offer a very wide choice which is person led rather than centre-led. Practitioner

Practitioners contrasted person-centred support with services being provided on the basis of what was available. It’s starting with the person around what that particular person’s needs are and matching the services with their needs rather than the other way round. Practitioner The opposite of ‘one size fits all’ really, although it’s not possible to have an infinite variety of resources, but to personalise it as much as possible. Practitioner We try and tailor our services around what they want rather than say, ‘Look, this is it.’ Practitioner

Managers had the same understanding, while highlighting the need for consistency: Develop services around that, focus around the [person] rather than the statutory services we have in place. Rather than fit those people into particular boxes. Manager We need to tailor our services around what users want and provide consistency of care as well. Manager

Treating service users as individuals Closely related to the sense that person-centred support must start with the person rather than the service system, was the view that each person must be seen as an individual. Maintaining a focus on individual requirements emerged as of central importance for personcentred support. [Support should be] specific for each person. Practitioner I suppose really treating people as individuals. Everyone has different needs. Not known Organising services around people. Practitioner 51

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This also requires empathy, if there was to be a proper understanding of each person’s needs. One question which care planners should ask themselves is,‘What would I want, if this was my own situation?’ Service user You should treat them how you would want to get treated. Practitioner

Another service user spoke about direct payments and how they are designed to serve the individual. Direct payments are a perfect example of person-centred [support]. They focus on the individual. Service user

Choice and control for service users Choice and control were identified as central aspects of person-centred support. Service users in particular regarded this as key. Giving me choice and control, putting me first. Service user I may need physical care but I don’t need people to think for me. Service user Letting me choose and speak. Remember – I have the right to choose what I do and when! Service user Having control so that when things aren’t working for you, you can say so. Service user Being able to decide for yourself what you want to do and not letting anyone decide for you. Other people may have good intentions for what you need but you might know better how to achieve it. Service user [Service users] are viewed as something to be done to or at and for me it is about – I am in control of my life now and no matter how disabled I become, I still want to be in control of my life… that is how we will get person-centred care because I will be in charge of it, not somebody else. (Service user

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Your worker can’t tell you what you need, you know what you need. Service user

Practitioners and managers also talked about the importance of choice and control for service users. For me it’s about power, the power being more with the person rather than the organisation or professional. Practitioner I think part of it is about having that control just to say, that is not working for me and I don’t want to do it anymore and I won’t do it anymore. Practitioner Actually allowing people to make the choices and the decisions rather than doing it for them. Practitioner Every aspect of what we do is guided by the person. Not by the parents, not by anybody else – by the person. A lot of people say that they do it, but we put it into practice. Practitioner Anything that is done around the residents starts with them. Manager I always come back with, ‘Is this what you want?’ Because I am not planning [for them], I am just there to be helpful. Practitioner

Setting goals An important part of person-centred support people identified was thinking about and planning for the future. This was often framed in terms of setting goals for what the service user wanted to achieve. This started with the individual’s interests and priorities. It put the person at the centre of the process and supported them to define their own, individual outcomes. It’s basically what we’d like to do in the future, how people can help us achieve a particular goal. Service user

Many practitioners had previous experience of person-centred planning. They found it helpful and it influenced their thinking. Its techniques include setting goals and an emphasis on rights, decisionmaking and active participation in community life. They said: 53

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[Person-centred planning is] a process which enables an individual to make changes in their life. Practitioner You could have two people who’ve got very similar kind of needs but it’s actually about what they want to do and where they want to go, and how they want to do it. Practitioner It’s really sitting down and talking with the client, planning basically. Where they want to be in however many years’ time and planning the steps to help them work towards that. For example one client is an asylum seeker who would like to study accountancy. The way I work with her is doing what she wants to do, staying at home until the child is one year old and then return to college, study basic accountancy and take it from there. So it’s about what they want not what we would expect them to achieve within two years. Practitioner I don’t think it’s just needs though. It’s aspirations as well. Practitioner It is about saying what your dream is. So that everyone can have a dream. And it could be to be an astronaut or to live in a mansion or whatever, but then you go back and you start to, step by step, see what the blocks are to you getting that and step by step what you can do in order to begin to achieve that goal. Practitioner

The importance of the relationship between service users and practitioners Many participants, particularly practitioners, emphasised the importance of the relationship between service users and practitioners. They felt that building a trusting relationship in which both service user and worker felt relaxed and confident was crucial. Practitioners could learn about the service user’s individual situation and build up important practical knowledge. Many people thought person-centred support could not operate without strong, effective relationships between service users and workers. It is building that relationship that makes the person-centred bit follow on. Practitioner

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When they first come, they come in and you get to know them bit by bit, and eventually as they get comfortable with you, they will start talking to you more. And you will get used to a resident and they will get used to you and they feel they can open up more…. Eventually they get to know you and they are more able to communicate with you. Practitioner It was all about meeting our clients, building a relationship is the real foundation. Practitioner You need to develop the relationship before you can start planning. Practitioner

Listening Listening to what service users say and supporting them to say it, were seen as key to person-centred support. In this way support starts with the service user’s own understanding of and expertise in their life and experience. Many service users highlighted this. Their comments revealed widespread experience of not being listened to and not having a say in the service they received. For them positive practice was the antithesis of this. What I want is to be listened to and respected. Service user Listening, really listening. Service user Respect that they are the expert of their own lives and their own needs. Service user We just don’t get no help whatsoever and we feel we need it. I feel if someone was to come around and see us and talk and ask exactly what we need, even if they couldn’t provide it, at least it would show us that someone is caring and listening to us. Service user

Many practitioners similarly recognised and highlighted the importance of listening and supporting service users to speak openly. Listening to what service users want. Practitioner

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Allowing them to have their say. Practitioner It’s about people telling you what their needs are. Practitioner We have person-centred planning meetings as regularly as we can for each individual resident, so that we can say to them,‘Tell us what you want, how do you want to spend your time, what would you like to do, what can we do to help you improve things for you?’ And we try our best to do that. Practitioner

Some practitioners saw listening as demonstrating respect for the service user. This could be the first step towards supporting them to have choice and control. I think that first of all the real belief that the expert in the room is the person, the client, and respecting that. They are the expert of what their needs are. Practitioner When we did some work with her on person-centred planning, and she actually started to be more expressive about what she wanted to do and more about positive stuff, she ended up saying, ‘I hate going to the gym, I want to play chess and Scrabble because that is what I am really interested in. Can you help me to get involved in that?’ Practitioner

Listening was also seen as part of a reflective process for improving a service. We are just learning that as a support service provider … you have to understand that still you will need to learn from the service users. Practitioner

One practitioner talked about the problems she had experienced with social workers not listening to what service users had to say. A lot of our work is trying to get social workers to understand that they need to listen to what people want. Practitioner

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Information Up-to-date, accessible, accurate and relevant information was widely seen as essential for person-centred support. How could anyone, worker or service user, make reliable judgements without it? You need the right information to help you choose. It must be informed choice. Service user We try to give people as much information as possible, all the information we know is passed on and if we don’t have it we look elsewhere to provide what it is they are looking for. Practitioner

Flexibility The emphasis on individualisation of services in person-centred support meant that services had to be flexible and adaptable. Service users expressed this in terms of: Remembering everyone is different and has different needs. Service user [Support] tailored to your own needs, that you can access as and when you need to. Service user

Service workers commented: Each case has its own merits and you have to work from there. If you need a new way of working with someone, that’s what you do. Practitioner Every single day is different…. They are all individual so we don’t make them do something they don’t want to do. Practitioner

One participant said that because person-centred support required flexibility, ‘standard models’ of support were not helpful. I don’t think we should follow any model, I think person-centred support is about not following models. I think person-centred is about listening to people…. I really get tired of all the models and theories that are imposed on us, and then that one doesn’t quite work so we’ll have another model. Not known

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A positive approach Service users and practitioners both emphasised the importance of focusing on the positives – what service users can or might be able to do, rather than on negatives – or what they might not be able to do. This emerged as part of a process of building people’s resources and capacity. Service users said: [Highlight] positive abilities, not the negatives. Service user Giving the person the opportunity to achieve. Service user By believing in people’s value and giving all people a chance. Service user

Participants felt that this helped service users to make choices and work towards what they wanted in their lives. Where I work with people, sometimes they don’t realise their own ability and then suddenly they find something coming up, I don’t know, maybe like writing or drawing or painting and then they discover for themselves naturally that they do have a talent or a strength that they never recognised before. That gives them confidence. Manager

Practitioners said: The actual point of it [person-centred support], is to raise people’s self-esteem and awareness. I think confidence-building is paramount if people want to change their lives and be master of their own lives. In our organisation we are increasingly giving people, or enabling people, to make choices for themselves and consequently some people are really beginning to believe in themselves and being able to feel as though they can integrate into mainstream society, and indeed make a contribution. Practitioner They [service users] have also got great things to offer and it is about finding those and actually saying, ‘Hey, you are a worthwhile person to contribute something,’ rather than just receiving services all the time. Practitioner They have skills, they have experience. Most of them have a wealth of knowledge, and it is often that if you can actually channel some of 58

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those skills enabling the person to do something, making a positive contribution. I have a lot of clients that I work for I know are working in schools. They work in small schools, junior schools and primary schools, and they support people with numeracy, literacy and they are making a positive contribution … and it gives them feelings of, they feel valued, they are making a positive contribution. That is the first stepping-stone to them moving on to a whole range of other things. Practitioner

A manager described this approach as: Actually building on the good bits rather than focusing on the needs.

Terminology Terminology is contentious in this field. We have already seen that some service users and workers felt that the modernisation of language was used to conceal the perpetuation of old values and approaches. But the issue extends beyond this. Just as policy and practice are at a stage of continuous change, so is the terminology associated with them. There has been some tendency to use the terms person-centred support and person-centred care interchangeably. Some of the people we spoke to did this. But some participants saw the term ‘care’ as inconsistent with the principles and goals of person-centred support. This reflects similar concerns about the use of the term ‘care’ by the founders of the independent living movement. Certainly what emerges from what both service users and workers have said is that person-centred support means adopting a different approach towards working with service users, one based on support rather than care. The difference is supporting people to do things for themselves rather than doing things for them. This denotes, for example, the difference between a service user being in the kitchen and involved in preparing a meal, as opposed to the service cooking a meal for the service user. This approach supports and develops independence. It gives more choice and control, as service users are active in the process, rather than passive recipients of services. This approach is applicable to all groups of service users, not just those perceived as the most able. People with severe physical impairments or learning difficulties should be actively involved in both decision-making and practical tasks. So it’s getting that culture change from the carer to support worker working in a completely different way. So it’s looking at the whole 59

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cultural values of enabling people rather than doing for people…. So we’re actually currently undertaking a lot of training for more service users and carers and we’re looking at people doing training together as well. Practitioner I think sometimes it is not about doing it for them, is it, it is about supporting them to do it themselves. Being there for them so when the next decision needs to be made they are perhaps half a step nearer and you are slowly backing off. Manager It’s a very good idea, you have got your own flat, not like a residential home. Here you have your own privacy and if you want help you can get help. You can be as independent as you want to be. Service user It’s often a relatively small level of support which enables them to be completely proactive. Our role is to support, to enable people but only up to a level where they can take over. Practitioner [Working in a nursing home was] very different. A nursing home is more personal care, doing a lot more for them. Working here you are still hands on but it’s more of a sociable level. Practitioner

This reflects a switch to service users having control over the support they receive and the direction this support takes. This impacts on the relationship between the service user and practitioner. It entails a move towards more equal relationships based on respect and understanding.

Defining person-centred support From what people had to say to us, person-centred support can be helpfully defined as a way of matching social care support to people’s individual needs. Crucially, it represents a shift from service users adapting to the services they use, to services adapting to the needs of their service users. It embraces flexible support designed to meet the goals of each service user. It starts with listening to what service users have to say and prioritising their rights and needs over those of service providers. It is based on developing strong and positive relationships between service users and practitioners and service users having access to up-to-date, accessible and high quality information. Person-centred support supports independent living and equality through promoting people’s choice and control over their lives. 60

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Summary In the context of government moves to ‘personalisation’ in public policy, including social care, this chapter examines the concept and practice of person-centred support. To do so it draws on the views of service users, practitioners and managers and relates person-centred support to ideas of person-centred planning and independent living. Person-centred support can be seen as a reaction against longstanding paternalistic and institutionalising approaches to support and social care. As well as examining the limited definitions of person-centred support so far offered, the chapter reports how service users, workers and managers define it, setting out a series of key components that they associate with it and the meanings that they attach to it. Crucially people see person-centred support as much more than a technique. They see it as an approach to support that is strongly value based and where the relationship between service user and worker is of central importance. References Beresford, P., Shamash, O., Forrest,V.,Turner, M. and Branfield, F. (2005) Developing social care: Service users’ vision for adult support (Report of a consultation on the future of adult social care),Adult Services Report 07, London: Social Care Institute for Excellence in association with Shaping Our Lives. Branfield, F., Beresford, P.,Danagher, N. and Webb, R. (2005) Independence, well-being and choice: A response to the Green Paper on adult social care: Report of a consultation with service users, London: National Centre for Independent Living and Shaping Our Lives. Brisenden, S. (1986) ‘Independent living and the medical model of disability’, Disability, Handicap And Society, vol 1, no 2, pp 173-8. Brisenden, S. (1989) ‘A charter for personal care’, Progress, 16, London: Disablement Income Group. Carr, S. (2008) Personalisation: A rough guide, SCIE Report 20, October, London: Social Care Institute for Excellence. Cole,A., McIntosh, B. and Whittaker,A. (2000) We want our voices heard: Developing new lifestyles with disabled people, Bristol: The Policy Press. DH (Department of Health) (2002) Towards person-centred approaches, planning with people: Guidance for partnership boards, Valuing People, London: DH. DH (2005) Independence, well-being and choice: Our vision for the future of social care for adults in England, Green Paper, March, London: The Stationery Office. 61

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Dowling, S., Manthorpe, J. and Cowley, S. in association with King, S., Raymond,V., Perez,W. and Weinstein, P. (2006) Person-centred planning in social care: A scoping review,York: Joseph Rowntree Foundation. Glasby, J. (2008) ‘Social care’, in P. Alcock, M. May and K. Rowlingson (eds) The student’s companion to social policy (3rd edn), Oxford: Blackwell, pp 351-6. Hatton, C.,Waters, J., Duffy, S., Senker, J., Crosby, N., Poll, C.,Tyson,A., O’Brien, J. and Towell, D. (2008) A report on In Control’s second phase: Evaluation and learning 2005-2007, London: In Control. HM Government (2007) Putting People First: A shared vision and commitment to the transformation of adult social care, London: The Stationery Office. Innes,A., Macpherson, S. and McCabe, L. (2006) Promoting person-centred care at the front line, York: Joseph Rowntree Foundation. Morris, J. (1993) Independent lives: Community care and disabled people, Basingstoke: Macmillan. Office for Disability Issues (2008) The Independent Living strategy:A crossgovernment strategy about independent living for disabled people, London: Office for Disability Issues. Oliver, M. (1996) Understanding disability: From theory to practice, Basingstoke: Macmillan. Putting People First (2011) Think Local, Act Personal: A sector-wide commitment to moving forward with personalisation and community-based support, London: Social Care Institute for Excellence/Putting People First. Race, D. (ed) (2002) Learning disability: A social approach, London: Routledge. Race, D. (ed) (2003) Leadership and change in human services: Selected readings from Wolf Wolfensberger, London: Routledge. Robertson, J. et al (2005) The impact of person-centred planning, Lancaster: Institute for Health Research. Sanderson, H. (2000) Person-centred planning: Key features and approaches, York: Joseph Rowntree Foundation. Thomas, C. (2007) Sociologies of disability and illness: Contested ideas in disability studies and medical sociology, London: Palgrave Macmillan.

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Part Two: Person-Centred Support: Barriers and Ways of Overcoming Them

three

The funding of social care Never mind the glossy brochures, the enlightened promises, our daily experience tells us a different story.... How many times do we have to hear a bewildered voice on the phone exclaiming, ‘It never dawned on me that they would do nothing!’ as yet another family member discovers that a much loved relative does not qualify for help. (User-led organisation supporting people with direct payments, quoted in Hampshire County Council, 2008, p 33)

The deficit reduction programme takes precedence over any of the other measures in this agreement, and the speed of implementation of any measures that have a cost to the public finances will depend on decisions to be made in the Comprehensive Spending Review. (HM Government, 2010b, back cover) Standard Three: Funding

A changed system of funding is needed for social care which ensures that all service users on a sustainable basis can have equal access to person-centred support consistent with the values of independent living, taking account of cultural and demographic change and the growing scale of social care needs.

Introduction Funding issues have long been a major concern in social care. While funding support for the National Health Service was massively increased under New Labour administrations from 1997 onwards, the same was not true for its partner policy, social care, where spending has not significantly increased. The legacy of Conservative administrations from the late 1970s onwards, was of a chronically underfunded social care sector. This has been perpetuated rather than rectified by subsequent governments. The 2006 Wanless Report on social care offered more 65

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formal confirmation of this view (Wanless, 2006). Wanless made clear that existing funding arrangements were untenable, particularly for the future, highlighting predicted demographic changes leading to large increases in both the proportions and numbers of older and very old people needing support. Because of the wide and growing sense that existing funding arrangements for social care were unworkable, in 2009, the Labour government published a Green Paper on future social care funding (HM Government, 2009). It put forward three funding options for public consultation. These were what it called the partnership, insurance and comprehensive options. All these options were based on people with some resources making a direct personal contribution to the cost of their care. At the same time, the government ruled out from public discussion funding social care from general taxation, along comparable lines to the National Health Service. None of the three funding options offered were costed convincingly. Even before the consultation period had ended, both the government and then Conservative opposition had come up with proposals for some free social care. Again neither was part of a comprehensive or clearly costed reform of social care funding (Beresford, 2009). In March 2010, the government published its White Paper, Building the National Care Service, after getting the largest ever response to a social care consultation with more than 27,000 submissions (HM Government, 2010a). While the White Paper recommended the gover nment’s comprehensive option for funding (dismissed by Conservative opposition as a ‘death tax’), it also proposed an all-party commission to explore social care funding which would rule nothing out, including funding from general taxation. Significantly a surprisingly large number of big third sector organisations, service user and carer organisations and other social care bodies had opted for this in their responses to the consultation. In May 2010, the new Coalition government similarly proposed establishing a commission on possible funding options for long-term care (HM Government, 2010b, p 30), the Dilnot Commission. Even before its report was published, without any significant new evidence having been collected, it ruled out the funding of social care from general taxation. So by the end of the first decade of the 21st century, funding for social care, the key basis for a sustainable system of social care, remained unresolved, with no clear or convincing proposals on offer or solutions in sight.

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Social care funding problems The issue of social care funding is one that politicians and policymakers have been very reluctant to acknowledge, let alone address. The pressure has been to make ‘efficiency’ and ‘productivity’ savings by working in different ways and to emphasise and rely on the financial contribution which service users themselves can make. This has been framed as a ‘partnership model’ of lending, with contributions from both the state and service user. What is crucial to recognise about social care is that in principle it remains a residual public service, access to which is determined on the basis of available funding rather than need and that this also varies, according to local circumstances, because it is still the responsibility of local authorities. In this sense there is a direct continuity with the 19th-century Poor Law which is not reflected in any other public policy (Cozens, 2003). It is also totally at odds with the universalist philosophy which continues to underpin the National Health Service, which is still significantly ‘free at the point of delivery’ and funded by general taxation. Examining the funding of social care, the national Commission on Personalisation set up by Hampshire County Council, drawing on the wide range of evidence it received, set out a disturbing picture for social care reform: Respondents stated that, for people who currently receive publicly-funded help, often only the most basic personal care needs are being met. If inadequate funding is supplied to meet needs there is a danger that people who have personal budgets will have to further stretch their resources to meet their priority needs, restraining or reducing their quality of life. Furthermore, evidence submitted supports the conclusion that, unless there are national changes made to how care is funded, personalisation will only be achievable for a minority as fewer and fewer people qualify for publicly funded social care. The difficulty that local authorities will have in reconciling the opportunity for choice with insufficient funds and eligibility criteria could mean even the most reasonable and modest needs of people will continue to not be met. (Hampshire County Council, 2008, p 33) Our focus here is specifically on funding in relation to person-centred support. Social care’s funding problems were the barrier to personcentred support which service users, practitioners and managers most 67

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frequently identified. Their comments highlight both the concerns they had about funding now and how these affect their attitudes and approach towards the future. They raised a number of key issues in relation to funding. These particularly related to: • • • • • • •

inadequate funding concerns about future funding funding difficulties being used as an excuse rationing and restricting access to support restricting the range of support paying for social care the negative consequences of charging for support

A picture emerges of how the funding problems associated with social care affect it and create barriers at all levels. They create barriers for social care policy, for particular services, for services for different groups and for people’s individual lives and support.

Inadequate funding Most of the people we spoke to, service users, practitioners and managers, said that there was insufficient funding for their service to work in a person-centred way. Many spoke of a gradually worsening situation that was making it more difficult for services to work in this person-centred way. This shortage of funding left many people feeling dispirited and negative. Frequently service users and practitioners talked of feeling that funding issues were outside their control and that they were unable to influence or change the situation their services were in. They communicated a strong sense of resignation that funding was insufficient and that there was nothing that they could do to alter this. Their comments reflect both their strong sense of the objective inadequacy of social care funding and the sense of powerlessness and frustration it resulted in, as a barrier they couldn’t overcome. It all comes down to funding doesn’t it? We don’t have any control over any of that. Service user All it is, is cut-backs, cut-backs or no money available…. There is a lack of funds here to pay for these things and that is that. Service user

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It is a very difficult situation isn’t it, funding? It boils down to that in the end, because the government makes so much money available to each council and then the council has to work out what their priorities are. It seems to me that the disabled and old people are at the bottom of the list. Service user

This powerlessness and resignation was not just felt by service users, as this comment by a manager shows. I mean we’ve still got some of the very traditional day services for people with learning [difficulties] and we’re massively underresourced. I mean if you’re supporting a group of 12 how can you possibly support that group in a person-centred way, you know? And I know sometimes it’s more than that, and that comes down to funding, it comes back down to funding. Manager

People talked about the effects social care’s underfunding could have on service users’ lives. Some felt that the issue of funding for social care should be highlighted more than it was, to challenge policymakers and the government. I think it is all about funding because I think elderly care is underfunded anyway, drastically. I think they are the bottom of the pile really. I think it is a bugbear with nursing homes, with managers and nurses. I think when we worked it out we are paid about £1.50 an hour to deliver the care, so I think we are drastically under-funded. Practitioner We have to accept that [money is limited] but it doesn’t mean we don’t challenge it when we see ways of improving services within the existing finance situation. But we have to challenge the underfunding that goes on in this country for services too. Carer

A service user explained how funding cuts affected a service that he used. It’s what we’ve been forced into because of the lack of funding. We’re not allowed to [go on holiday]. There’s not a big social budget anymore. It’s more like the support on offer is for people to get their shopping, cooking in, just the day to day necessities…. The holiday’s luxury. And also going out socialising is a luxury which, you know, for some people it’s really not, because they 69

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are very isolated and it’s a quality of life. Particularly maybe for somebody with quite a severe learning difficulty, it is very hard for them to go out into the community and get friends and go round and about. Service user

Several of the services participating in our project had experienced great financial insecurity. Frequently services were reliant on shortterm funding which could result in new services disappearing before they were properly established. Things that are promised to you … they arrive but they never last. Service user The services are set up in the beginning with great ideas and intentions, but all of them not followed through right to the end, or cut short due to money. Practitioner

A different view A minority of services, however, said money was not a problem for them and that concerns about a lack of money did not influence the service they provided. In my project I haven’t really found money a problem, it’s really good on that side. Practitioner Well I think we are quite lucky really because we are a charitybased organisation. We get our funding, our managers get our funding, so we don’t worry about targets or anything like that. Basically we work one-to-one with a client and we help them to meet their aspirations. Our aim is to get them into full-time or part time employment, as long as they want to work then that is the criteria for working with them. Practitioner

What we can’t know from this is whether they had simply been fortunate so far in terms of financial allocations and priorities and whether this might change. Managers of these services, however, were aware of the financial hardship faced by many other services. They consequently feared that their services’ financial position might deteriorate in the future.

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You’re worried that someone will say ‘See how you do with half the staff.’ Manager

Concerns about future funding Funding emerged as a cause for concern both for the present and for the future. Social care is overshadowed by the insecurity of its funding. Several of the services we worked with expressed major worries about securing funding in the future to continue to operate their services. In Downhampton the independent self-advocacy group was funded by the local authority and short-term charitable grants. This led to a great deal of work for the manager who helped set the group up, making funding applications and trying to find suitable funders. It meant that the workers were on short-term contracts and lacked job security. It could result in workers’ roles having to change in order that the service could meet the requirements of a new funder. A manager from another service said: I think it’s definitely important to get the big funders and government … for them to buy into person-centred services as well because I know unfortunately, especially in the charity sector a lot of it does come down to funding, and if you don’t have the funding you just can’t operate. Manager

One practitioner explained how new projects were launched with lots of publicity, started brightly, but subsequently closed without becoming established. In our organisation we had a project called PCP [person-centred planning] with a limited amount of funding. It feels like very often what happens is that a new initiative has been funded and everything is all gung-ho. It gets rolled out – it seemed very quickly – and the university was asked to make a study of it, before anyone really understood or was given time to have the training to implement it. Then the funding is pulled away and another initiative will slowly go to dust. It feels like just maintaining something would be really good rather than this flurry of new ideas. Practitioner

She went on to say that another problem with new initiatives was that practitioners could be expected to implement them without additional resources.

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It feels like we were talking the talk but not walking the walk. Somehow it was all very exciting, a lot of flurry, but on the ground level, no money, no time. We were still meant to carry on our normal job and incorporate this. We can’t just carry on all of our work, plus introduce something that’s very new. Practitioner

A manager of a nursing home described the difficulties created by shortterm funding agreements linked with ongoing cash-flow problems. I think if you talk to nursing home managers wherever, they will say … you are waiting, sometimes the resident could be dead before you get your contract and get any money. Manager

Another manager highlighted the problems arising from the short-term nature of funding streams within social services for effectively planning for and meeting service user’s needs: We don’t know if it [Partnership for Older People Projects – POPPS] will continue. That’s a barrier. If it’s funded for x amount of time, how do you carry on? I think there may be an evaluation and a decision about which projects are successful but they may be discontinued…. Departments having to bid for resources which may be time limited. If your bid isn’t successful, you don’t get the funding. Is that any way to manage social care? Manager

Seeking creative solutions This lack of money had encouraged some people to work even harder to find ways of making services more person-centred. Many of these solutions relied on competing more successfully for resources and working more closely together. It pushes you into being very creative as a worker – as long as your creative ideas are … more cost effective than other things. Practitioner

In Middleshire, for example, some support services were cut back during the course of the project. In some cases, where support was no longer available for leisure activities, service users started to do things themselves and supported each other, so that the result was actually positive. By offering each other mutual support, service users were able to carry on activities that they would only previously have done 72

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with the support of care workers. This led to an increase in the service users’ confidence in their own abilities. We’re happy without the staff around – we enjoy ourselves. Service user I feel better without the staff. Service user

Creativity, of course, on its own, was not always enough. You can try to be creative as much as possible but if they [service users] are not given the opportunity and the right time to do it, then you can’t do it and it’s frustrating. Not known

Partnership working Working in partnership with other services and organisations could help stretch limited resources and use them more effectively. It could also help in: • • • • • •

Making new contacts Integrating with local communities Learning about each other Increasing local knowledge Pooling resources Developing a shared vision and approach

Participants said: We are linked with different churches in the area. We have a part time chaplaincy coordinator based here, which is a really brilliant role and her role is to look at each tenant and their different faith needs, if they have them, or different spirituality needs and work with individuals that way. She also works to link people with a befriender, so we are gradually building up a group of volunteers. Manager There’s also a lot of support offered by the church and a lot of the groups are based in the churches in [Grandshire] and they are proactive but in a very non-evangelical kind of way. There’s a kind of network of the churches being opened and they do things like

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luncheon clubs and support groups for people with mental health issues, drop in clubs and things like that. Practitioner We spend a lot of time working on community-based initiatives and working in partnership with other organisations like adult education and the voluntary sector. And we have found that is a good way because quite often people will give time rather than money and staff commitment is not all on one person. So we do a lot of partnership work with other agencies. We are setting up community groups and getting funding through various streams, there is regeneration where I work, so there is often money that is linked to regeneration and community-based groups. So we try to encourage people to set up groups that they actually have power in, I know that is very difficult when you are not a key service. But for those clients we work with in the community, we encourage them to set things up in their own backyard, because you have got no travel implications then. Also you are not isolating anyone, so it is about creating that sense of community. It is something that is a little bit more sustainable. Practitioner

Case study Funding problems inhibiting personcentred support This case study highlights the destabilising effects for both services and service users of unsatisfactory financial arrangements and how these get in the way of person-centred support. This residential service for people with learning difficulties in Wendlbury was provided by an independent charitable provider. It had been in existence for over 20 years. However, its main funder, the local adult services department, no longer paid enough to fully fund the service. The provider was therefore operating the service at a financial loss – subsidised by its other services for older people. In addition to this, the provider had come to recognise that the service was ‘an outdated model’ and that major re-structuring and re-modelling were required for it to become person-centred and offer what its residents want. Even though we have money to build and alter the building, we still didn’t have any guarantee from social services for the funding…. Social

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The funding of social care services hasn’t got a problem with what we deliver. Their problem is that they can’t pay for it. Manager We can’t actually go anywhere without the commissioners coming with us. [We have said to them] ‘Look, we recognise your financial restraints. We recognise that this may take some time to develop. We recognise that we may have to do it one piece at a time. But we need you to be committed and we need to start putting down some time-scales that this work is going to happen.’ Manager They are fundamentally committed to change but they do have a major financial problem. Manager The service was unsure how to move from existing arrangements to new ones, given the need for a period of transition and the lack of financial support from the local authority. How logistically we move from one model to another…. We can’t not fill vacancies because the unit costs would go through the roof. Manager The trust providing the service was facing a difficult balancing act. It wanted to redevelop its service, while offering continuity and support to service users. However, it was making a financial loss and had no guarantee that the local authority would agree to fund the proposed new arrangements. It was loathe to threaten to withdraw the service as it knew the distress this would cause to service users and their families. [Giving the council notice] wouldn’t be the best way of doing it. We have the right to say ‘no,’ and the council have the legal responsibility for services to these people. [Residents only have a licence agreement so technically the trust only have to give them a month’s notice.] So that is the apocalyptic scenario. Manager Service users, on the other hand had been left wondering whether the proposed changes would ever take place and expressed resignation that this was a financial matter that was outside their control. Whether it will happen or not is a different thing. I don’t know. A lot depends on the money. Service user

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CASE STUDY ENDS

Funding difficulties being used as an excuse Not everyone thought that inadequate funding was the main problem for social care. A small number of people questioned whether it was always the real reason why a service failed to help. Some service users thought that there were times when they had been told that this was why they couldn’t do something, but they didn’t believe it. They thought that money was sometimes used as an excuse and that the actual explanation might have more to do with the service provider itself. Thus a service user who was waiting to move from a residential home to shared accommodation was left not knowing why her plans could not go ahead. They said it’s down to money…. [They’re] passing the buck. You don’t know what’s been said. Service user

One practitioner saw the solution as being more inventive in how budgets were used: It’s not about money and time. It’s about what you do with the money you’ve got and being creative about it…. Like I say, you don’t necessarily need a lot of money to go on holiday. You can find a holiday in the same area. Practitioner

A manager with experience of supporting voluntary sector organisations said finding funds came down to having the skills to make successful applications – and to perseverance. There is a huge amount of money out there. You just have to have the skills, or you have to know people who do have the skills, to put the funding application together… It is there and you have just got to be prepared.... [Funding] is a barrier you have to get over. You can’t just say, ‘There is no funding, so therefore we can’t.’ You say ‘There is no funding from this source. Where can we access it?’ Manager

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Rationing and restricting access to support Here we move from the funding of social care policy and social care services, to the allocation of support to individual service users. There are two aspects to this. These are determining eligibility to receive support and what people have to pay for it, or ‘charging’, as it has come to be called. Thus the potential service user is subject to two assessments; a needs assessment and a financial assessment. We begin with the first of these, needs assessment, which employs a series of ‘eligibility criteria’. Access to any form of social care support: domiciliary, day care or residential support, has been conditional on being assessed as ‘in need’ of it. Because social care is not a universal service available to all and to which all are entitled, a rationing system based on such eligibility criteria has been developed to determine who should receive support from the state. From 2003 this was based on the government’s Fair Access to Care Services (FACS) framework (DH, 2003). This was intended to standardise the assessment criteria for social care services on a national basis. The stated aim was to increase transparency and consistency while taking account of local circumstances and the funding available for social care. While the assessment criteria are standardised, the system allows local authorities to decide which of the four levels of need to meet (critical, substantial, moderate or low). The criteria are overseen by managers who are ultimately responsible for financial decisions. Restricting entitlement to support We encountered widespread and great concern that the eligibility criteria for services had become increasingly restrictive. Therefore fewer people qualified for services. The level of service provided to those who did qualify had decreased and become more focused on basic personal care, like washing, toileting and dressing. More applications for services were turned down by funding panels. People seen as needing ‘low-level’ support had come to be identified as having low eligibility. Two things quickly become apparent. Judgements were primarily budget-driven, rather than based on professional experience and discretion. We met many service users who were receiving a scaled back, lower level of service than they had received in the past. It seems to be only the people that are almost on their death beds, that hit the top criteria, who get what they want. Service user 77

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Social services don’t come on board quickly. They wait until the last resort and then they help. You are crying out for help and they are not helping you. Service user Services are getting better but they are cutting back the whole time. If they had more money available they could have more services, but because they are cutting back, there are less hours of care, less services available. What we hear from social work, because of these cutbacks, social workers are given an idea of what they can spend and how to prioritise. But we don’t know what our situation will be because of the changes. Service user

Participants’ concerns are supported by findings of the Commission for Social Care Inspection (CSCI). These have highlighted the poor quality of life of many people seen as ineligible for public support for social care, as well as inconsistencies in who was assessed as ineligible both within and between councils. The tightening of eligibility thresholds has had an effect on the level of non-residential services provided by councils, particularly home care. Since 1997, the numbers of households receiving supported home care has fallen from 479,000 to 358,000 in 2006, though the number of total hours has increased (because the average number of hours that each eligible person receives has increased). It is estimated that, were all councils to set their eligibility thresholds at ‘substantial’ and ‘critical’, the average provision of council-supported home care would fall by just under 20%. (CSCI, 2008a, p 20) Restricting eligibility thresholds in this way is what has subsequently been happening more and more. Social work practitioners spoke of their frustration at making assessments and applying for funding only for their applications to be turned down. One of the shortcomings of the traditional social care system (in contrast to a system based on personalisation and individual budgets) has been seen as the limitations of professional assessment. What becomes apparent from our project is that assessment is shaped by financial and managerialist concerns, rather than those of professionals, which have been subordinated. Arbitrary and increasing restrictions on people’s access to support are clearly working against the operation and development of personcentred support.

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We have got things that enable it to be more person-centred, like direct payments and the ILF [Independent Living Fund] things like that, but we are very restricted in terms of funding we can get…. We do have difficulty in getting agreement for resources. We are very limited on that and that is getting more and more difficult. So that, I think, then affects the ability for the person to be more in control and have more of what they might want for themselves…. It can be a battle. Practitioner

Several participants were clear why they felt applications for services were being denied. They said that funding was being rationed by local authority managers to meet only the most basic needs. The problem with the assessment process is that often the guys at the top with the money say to the people who are doing the assessment, we have only got this amount of money, and they adjust the assessment according to that knowledge. Service user I think it’s impossible to work closely with social workers, it’s impossible for them to be person-centred, absolutely impossible because they do not have the resources to be able to do it, you know. Everything goes to panel now, and the money’s not there now and even the resources aren’t there. It’s so hard to get care and to allow the flexibility and choice that people would like. Manager [Independent living] it’s expensive, so people end up in institutions like this [a day centre] for 20 years. It’s not a very healthy place to be. I mean it’s nice and we do our best. But you can’t do cooking for 10 years. You want to do something different but they can’t do what they want to do because of those money issues. Practitioner

One relative spoke about the struggle he and his wife had experienced in applying for a service from their local authority. This was timeconsuming and required enormous effort. He felt that the real problem had been a lack of money. I had to go back to social services and say, ‘Look I’m not going to be able to look after my wife. Her personal care have got to be done in the morning and somebody needs to come in to sort out the food for the evening.’ It took me 18 months to get someone and it’s all down to money, budgets…. But, you know, 18 months 79

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though and I’m not the type of guy who will give up, and I’m on the phone virtually every other day to these people. And then at the end of the day, it was ‘We are going to have to look at your wife’s care plan to see,’ you know,‘what the budget can pay for,’ and they openly admitted, the guy did, that it was all down to money at the end of the day. I was even told once to give up work and look after my wife full time. Carer/relative

Restricting the range of support Local authorities were also restrictive in the kind of support that they offered service users. Service users spoke of their frustration about official definitions of care and support. Local authorities frequently regarded their role narrowly as funding personal care rather than social support more generally. This is clearly at odds with their social care responsibility, let alone with efforts to move to more flexible person-centred approaches to support. This emerged when individuals requested help for a task that the local authority did not view as ‘personal care’. A lot of the preventative work went out of the window: the shopping, the cleaning, the ironing, and so on. A classic case, a gentleman whose wife had Alzheimer’s disease, dementia, he wanted to do all the personal care like the toilet, cleaning, the mopping up when she wet herself, and the bathing and the dressing, and he wanted to do all that, but he really needed somebody to do the washing and the cleaning and the ironing because he wasn’t very good at that. But the rules said no, social services provides personal care, ‘We don’t do washing, cleaning and ironing.’ Carer Now you get support going shopping. If you are lucky you will get support going to the doctor’s and that’s about it. We used to get support to go bowling, to go to the pictures and to go to play pool. You can’t do that any more. Service user

The conflict with person-centred support There was widespread frustration that while particular services and the people who managed and worked in them, might attempt to provide person-centred support, their efforts could repeatedly be frustrated by a local authority turning down, or deferring a decision about an application to extend an individual service user’s care package. This 80

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could prevent the service user making progress for want of support. One such example was of a service supporting a young man with learning difficulties, who they had found out, through using personcentred planning, wanted to work as a gardener. If their application for funding to provide one-to-one support to learn about gardening was turned down, his progress might be stalled. Under such circumstances both service users and practitioners involved felt frustrated because efforts to work in person-centred ways could not be progressed. Practitioners said: You can have the right values and go through a person-centred planning process, but it makes no difference if there is no funding to support the individual to work towards their goals. Manager Sometimes you are trying to use a person-centred approach and the resources around you don’t allow the person to move forward as they want. Practitioner The person-centred approach often is looking at a person’s aspirations, a person’s dreams, a person’s hopes. And you can do an assessment on that and then you can work out a plan of action and more often than not, it has to go to panel and it is the panel who decides whether that person is eligible. The majority of our services now, we are not able to actually provide those services, they have to go to a panel. It is all to do with funding and keeping a cap on the amount of money the county are currently spending. So it has to go to panel and quite often you have to put an incredibly good case. And because the bar for people to be eligible for our service is so high, it makes it virtually impossible to do the personcentred approach, because what they want does not fall within the eligibility criteria of our service. Practitioner Yes, we are working very much towards [person-centred support], but one of the most difficult issues we all probably have to face is funding and while we like to be able to meet the particular personal needs, or aspirations of the people who we are working with, whether we can actually afford to meet those needs is another question. When we apply for services, we as workers are not able to just provide those services. It has to go to a panel. Our services’ application has to go to a panel and it is the panel who then will decide whether the services we have assessed that

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person as needing [will be provided]. So it is not straightforward. Practitioner The budget holders are who say yes or no. It doesn’t matter what work you have done and how much you advocate on someone’s behalf, if they say they haven’t got the money you can’t do it. Practitioner

This lack of flexibility and scope for practitioners to work creatively is frustrating and undermines professional judgement. This experience is supported by findings from the Commission for Social Care Inspection, which concluded in its annual report on social care that: Demand was often managed by tightening procedural guidelines to reduce scope for interpretation by front-line workers. (CSCI, 2008a, p 23) Local authority funding criteria often rule out services that aren’t seen as meeting critical or substantial need. This is likely to include preventive services which work with people who are seen as falling outside these criteria. We are having to cut away services that have been funded [for people seen as having low dependency]. But that’s short-sighted. If you cut out low dependency and moderate dependency services and only offer financial help for the critical then they are all going to be critical very, very shortly and you are going to have less money to go around, and I don’t understand why they don’t see that. Manager

The Commission for Social Care Inspection adds further evidence to this view based on research with six local authorities. None of the councils was happy with the situation and those that had gone furthest down the rationing route (such as in limiting eligibility to critical needs only) acknowledged this was an ultimately self-defeating solution which was unsustainable. (CSCI, 2008a, p 31) In one area we heard that day centre service users were anxious not to be reassessed because of concerns that they might then be told that they were no longer eligible for the service. The eligibility criteria 82

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for services had changed since they began attending the centre. They were worried they would either no longer be able to use the centre at all, or only use it on a more limited basis, for example, on two days a week instead of four. [Service users are] often locked into what days they come now. It’s historical, keep your head down and don’t try and change it because you might lose out. Once you put your head up, eligibility has been reduced and reduced, people here are not being assessed, so as soon as you put your hand up and say ‘I want something different,’ it’s ‘Oh hang on, you’re not really entitled to it [the day centre] either’. Practitioner I think a number of people think coming here [The Barry Centre] is the least worse option. They come because they think their partner needs a break. [They] just sit waiting in the corridor waiting to go home a lot of the time, they might say they would prefer something different but in the scheme of things they think keep their head down and stick with what they have. Practitioner If you bring a spotlight on your situation you might end up with nothing. Practitioner

The national Hampshire County Council Commission on Personalisation concluded that the dominant feature of the current model of eligibility was ‘rationing people out of the system’ rather than ‘facilitating people to secure the care and support that they wanted’ (Hampshire County Council, 2008, p 56). In its own 2008 review of eligibility criteria commissioned by the government, the Commission for Social Care Inspection, concluded that the current system had fundamental failings (CSCI, 2008b). It also acknowledged wider concerns about the effect of inadequate social care funding on the system. The Commission concluded that the current system for determining eligibility was so flawed that it needed immediate reform, while in the longer term, social care funding needed to be increased. Perhaps the most important point that Commission for Social Care Inspection made in its review of the FACS-based system of eligibility criteria for social care was that they were strongly at odds with the government’s commitment to personalisation and the increased emphasis on prevention and general well-being. This is entirely consistent with the findings from our work, which highlight the mismatch between the existing eligibility system and person-centred support, creating major barriers in the way 83

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of providing flexible and imaginative responses to people’s rights and needs.

Paying for social care Eligibility criteria, however, are not the only obstacle restricting people’s access to state support for social care. Social care is also a means tested system. From its creation under the 1948 National Assistance Act, social care never offered a free service available to all who might need it. Instead provision in institutions continued to be the default position. As Julia Parker observed in 1965: [The National Assistance Act] made no attempt to provide any sort of substitute family life for old people who could no longer be supported by their own relatives. Institutional provision was accepted without question. (Parker, 1965, p 106) Unless people’s incomes and savings fall below the set level, they have to pay for domiciliary services. Homeowners have been expected to sell their homes to pay for residential care. Our project included people using residential, day care and domiciliary services. The media, charities and other critics of policy have particularly highlighted what they see as the low level of savings allowed before people have to pay for social care. This is seen as unfairly penalising people who have tried to be prudent and save for their old age (Hampshire County Council, 2008, p54). In our project, however, much more concern was expressed about charging in general than about levels of ‘disregard’. This may be because our project included many people without savings or a home of their own, as well as some who had one or both. From the creation of the welfare state, domiciliary services were never routinely available free. Applicants faced a means test which local authorities had considerable discretion to set. However, as Robin Means and others have shown, ‘the early 1970s did witness moves in a direction that was beginning to offer something close to a right to a service’ (Means et al, 2002, p 32). During the 1970s and first half of the 1980s much less attention was paid to charging (Means et al, 2002, p 33). Since 1983, however, local authorities have gradually extended charges for their community care services (DH, 1983). This came to be embodied in the 1990 National Health Service and Community Care Act as one of its key consumerist principles. Charges range from fees for transport to a day centre to charges for ‘home care’ services. 84

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They have come to constitute an increasing percentage of expenditure on adult social care services. Charging for local authority social services is more commonplace now (in 1985 the only common Local Authority charge was for meals on wheels – now 94 per cent of Local Authorities also charge for other home care services) (Audit Commission 2000). These charges vary widely so it is difficult to make a meaningful average (DRC, 2005). (Tibble, 2005, p 26) Councils recovered over £2 billion in fees and charges for social services in 2005-06 (14% of total gross adult care expenditure). (CSCI, 2008a, p 8)

The negative consequences of charging for support Participants in our project highlighted a range of problems caused by these charges. Increasing exclusion First were the particular difficulties they created for groups already recognised as being ‘hard to reach’ or ‘seldom heard’ and facing additional barriers, who were less likely to access social care services. This problem was epitomised by the experience of a service that worked with a marginalised group of service users in Downhampton. These were young people with learning difficulties from black and minority ethnic communities. The service was set up to meet the unmet need of people who weren’t accessing existing services. After much sensitive and time-consuming work, the services had made great progress in forming relationships with family carers and the young people. Uptake of services had gradually grown. However, the introduction of local authority charging for the services had discouraged participation in many families. Services said that in some cases the charges were jeopardising the preparatory work they had done. This threatened their ability to address the problem of low take-up of services among black and minority ethnic groups. Some people have stopped coming to [our service]. One reason is that some people have been asked to pay. Service user

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There’s a charging policy in Downhampton now. If [a service] accesses any transport, you get the money from the council and you have to pay I think it’s £2.85 a day. But because of that a number of our members have pulled out. You have to go back and really, you know, bring out all the work they’ve done and say this is what they’ve achieved. And, you know, it’s really hard work to get the parents on board, the guys and the girls still want to come. Practitioner Yeah. I think it’s important to communicate well with families…. They are introducing charges for people with learning disabilities, and especially where you’ve already got communication difficulties with families who do not speak English, when you introduce those charges … what tends to happen is the families tend to make the decision that they don’t want their family member to participate in any particular service which then means that the service user is no longer a service user and is basically confined to the home and doesn’t receive any community support or any peer support…. I think for some particularly disadvantaged groups, I think we need to be more creative. It’s about having support workers who can communicate effectively with the families, perhaps know their first language and perhaps build some trust with the family, so when these charges are introduced, they are in a position to explain things to the family rather than just introduce a charge and then give them a bill which obviously they don’t understand about. So it’s about building trust and trying to allay some of those fears that families have about the system. Manager What we’ve had to do is to support ethnic minority families because we’ve got a worker who can speak a community language. With regard to policy, we’ve had to send out that worker with the person who’s working out the figures as to how much the charges are and to visit those families where they don’t really understand the system and explain things, which does help matters. I think once they know what it’s all about, they are more willing to cooperate otherwise they just shut us out. So we had one instance where a couple of months ago the family said they didn’t want to send their family member because they didn’t want to pay. Now their family member has withdrawn from the support group and the advocacy group and that person themselves felt that they were losing out. So after a few months down the road, we organised a meeting with the family where we had somebody who could speak 86

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their language and we had the support group worker go, because they already knew that worker, to explain the charge. The family were really unhappy that somebody had originally come round and took [details] about their finances and said that the charge had to [be] levied and not explaining things fully. But this time there was a proper meeting and the families got their concerns and the anger about the charge off their chest and said ‘Yes it’s ok if our family member attends the support group now we’re clearer as to what the charge is all about.’ Manager

Discouraging independence The second problem local authority charges caused, affected service users who were in or wanted to find paid employment. Charging regimes frequently mean that service users gain little or no financial benefit from working, as their income has to be used as a contribution to their service. This barrier emerged as particularly damaging for people who lived in residential services or who lived independently, but had high support needs. It could also act as a major disincentive to being employed. Thus: One of the lads does work, even though he does lose a lot of the money he earns. He is just about £20 better off for working, the rest goes to his care. This would be the same if he were living in his own home with a care package. Manager I’ve got nothing practically. My wages get taken away and I get about £19 per week. I’m off incapacity benefit as well but I want to keep it going because it would drive me crazy [not to]. Service user

Imposing economic burdens The impact of charges for services was especially great for people on fixed and relatively low incomes. Many service users now had to pay a number of different charges made by different service providers. These were especially burdensome where services used to be free and people’s incomes hadn’t increased proportionately. Charging noticeably affects younger disabled people whose incomes are on average lower than non-disabled people. Disabled people of working age tend to have lower incomes than non-disabled people, as they are less likely to be in work 87

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(and have lower average wages than non-disabled people (DRC 2005)). (Tibble, 2005, p 26) Jenny Morris, the disability commentator has explained why disabled people are often in a disadvantageous economic position in comparison to non-disabled people, not least because of the additional costs of impairment. Disabled people generally do not acquire, through the labour market, enough purchasing power to meet their needs/additional requirements relating to independent living. There are two dimensions to this. a) Both impairment and disabling barriers mean that disabled people are less likely to be in paid employment, and less likely, if in employment, to be earning average or above average wages. They are also less likely to have savings, to be owner occupiers, or to have an occupational pension. b) It is more expensive to be disabled – i.e. impairment creates needs which can be costly to meet and disabling barriers of unequal access and negative attitudes can also lead to additional costs. (Morris, 2003, p 48) The extra financial pressure imposed by charging can also be a source of distress and embarrassment for those who struggle to find the money to pay. You get funded by your local council to go there [the day centre] and they just have this thing where you have to pay a pound a day. Now not everybody pays that, there are quite a few conners there and they don’t pay. I always do and I always find it embarrassing when I haven’t got the pound. I always say if I haven’t got it, ‘I want you to tick because I will pay you next time,’ and I always come in and pay. That is incredibly embarrassing for me. Service user

The expansion of charging Many service users gave examples of things that used to be free that they now had to pay a charge for, or even had to pay the full cost for. Some were concerned about their ability to meet these increased costs.

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Workers are not allowed to go out for a meal with us. They’re not allowed to go to the theatre or anything we want to go to. We’ve got to find friends to go with and if you haven’t got friends you don’t get to go out. They say go out with your friends, but I don’t quite feel safe. It just came out you know my friend who was at the meeting … they’ve got to pay for a meal now. I mean we never used to. Service user Funding is a problem, there is talk of my respite ending. I will have to pay for it. Service user For instance we used to set up lots of groups in the community working with local education providers to provide courses and they were free, and it was encouraged by the central government, which then after a year or two they changed their mind and decided to fund it differently so it meant that our service users now had to pay for that service. Practitioner

Other examples given to us included: • • • •

meals in day centres transport to and from day centres respite care a talking-book service (for visually impaired people)

Many service users were using a range of different services, some from their local authority but others less formally, such as education classes or clubs. Each local authority has a different charging policy outlining their rules and procedures. Yet guidance issued by the Department of Health to promote consistency and fairness made clear that: It is not acceptable to make a charge on disability benefits without assessing the reasonableness of doing so for each user…. (DH, 2002, p 4) Regard should be paid to the effect of any charge on a user’s net income; net incomes should not be reduced below defined basic levels of Income Support or the Guarantee Credit of Pension Credit, plus 25%.... (DH, 2002, p 10)

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Charges for different types of non-residential social service, and allied services, and how they affect individuals should be considered together, not in isolation. (DH, 2002, p 3) Charging was not only denying some people support, but also restricted the lives of many others. Service users taking part in our project spoke about the effects that paying charges for services had on them. People have had to stop doing some things because they can’t afford them. This affects standards of living. Most members [of the day centre] have a fixed income, so having to pay for more and more means your pot gets smaller and smaller so it limits what you can do. It’s not just one thing, it’s everything. Service user Every time the government withdraws funding from something, if you wish it to carry on, it has to come out of your own pocket. You only have so much money, you’re either on benefits or old age pension … you can’t carry on paying for things. So some of the things you used to enjoy you have to finish, which is unfair. Service user

Transport Transport is an especially important example of the damaging effects charging can have, restricting service users’ human right to freedom of movement. Many service users face high transport costs in their everyday lives in comparison with the majority of the population. In their study Disabled people’s cost of living, Smith and others demonstrated the reasons for and levels of extra costs for transport experienced by disabled people. Because public transport is often inaccessible, many disabled people have to rely on specialist taxis, for example with wheelchair tail-lifts, or other specialist transport, which are more expensive than public transport. At the same time a disproportionate number of service users live on benefits or other fixed incomes, like pensions. Using the Government’s favoured poverty measure of living in a household with below 60 per cent of median household income, 29 per cent of households with at least one disabled adult were in poverty compared with only 17 per cent of those without a disabled adult. However, these statistics are based on income (including disability benefits) and do not take into account the 90

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additional extra costs disabled people incur because of their needs compared to those with no disability on similar incomes. (Smith et al, 2004, pp 80-1) Service users highlighted to us the problems created by the costs of travel: It depends what we need, but we get a separate bill for that [transport] depending on how often we go out. If you don’t go out for a month, you don’t get a bill, but depending on how often we go out and you will get a bill. Service user Now you have to pay for transport to the hospital if you receive [Disability Living Allowance] Mobility Allowance. A single trip to hospital and back costs £30 and your allowance is £42 per week. Service user There are concerns that some people – those on the lower rate mobility component of Disability Living Allowance – may lose their entitlement to free bus travel and this is a worry to people. Service user

The scale of the problem The inadequate funding of social care and efforts to ration it through restricting eligibility for support, means testing and charging for it, have created massive barriers in the way of meeting people’s needs and securing their human rights. The present system has shifted the financial burden to service users and their carers. Figures on the national situation published by the Commission for Social Care Inspection confirm the experiences related in our research. Around half of the expenditure on personal social care for older people comes from private contributions, either from charges and top-ups for those receiving care with council financial support, or from spending on privately purchased care. It is estimated to be nearly £5.9 billion. This does not include the substantial contribution of resources from private individuals in the form of caring by families and friends. (CSCI, 2008a, p 19) Arrangements for social care funding thus create massive barriers in the way of the implementation of person-centred support at both policy 91

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and individual practice levels. The funding system is not consistent with achieving the key goals of person-centred support to increase people’s choice and control over their lives and support. It is difficult to see how initiatives to advance person-centred support can be rolled out to become mainstream practice until the present funding system is radically reformed. Crucially this seems to be because it rests on a deficit model of need, where people have to prove how little they can do to have any chance of qualifying for support. This is contrast to an approach based on independent living, where the qualification for support is that it enables people to live on as equal terms as possible as their non-disabled peers. As a result, state supported social care ‘has become restricted to an ever decreasing small group of recipients by the application of eligibility criteria and means tests’ (Hampshire County Council, 2008, p 50). While they clearly benefit from it, according to the Commission for Social Care Inspection, two other large groups have been created which are grossly disadvantaged. These are first, self-funders, who lacking appropriate advice, information, support and advocacy, are ending up inappropriately in disproportionate numbers in residential institutions. A second group ‘lost to the system’ because they do not qualify for support, although they have significant support needs, ‘often struggle with fragile informal support arrangements and a poor quality of life’ (CSCI, 2008a, p 35).

Summary Service users, practitioners and managers identify the failings of social care funding as the biggest barrier to implementing and developing person-centred support. They report that the inadequate funding of social care restricts who can get support and the adequacy and appropriateness of support they receive. Financial limits not only inhibit current policy and practice, but also make it difficult to improve provision and to plan for the future. Some agencies and practitioners have developed creative ways of overcoming the financial barriers in the way of person-centred support, particularly through harnessing community resources, working more closely together, developing new roles and competing more determinedly and effectively for resources. But these initiatives do not appear to offer a secure or effective solution to the shortcomings of the existing finance system of social care more broadly at either individual or policy levels.

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The modern system of social care has meant that people have had to go through two sets of hoops to qualify for support. These entail both ‘needs’ and financial assessment. People’s entitlement has first been assessed through a system of narrowing eligibility criteria and then through means testing. These two systems have worked individually and together to exclude an increasing number of people from state assistance for support. The social care system effectively operates to deny rather than offer people support. The growing number of people who fall outside the present system of eligibility criteria must make their own arrangements for support and pay privately. Everyone can expect to pay some level of charges and people with even modest savings must expect to meet the full cost themselves. This system works against the meeting of people’s rights and needs and particularly penalises some groups. It increases the costs of disability, encourages institutionalisation and works against independent living and person-centred support. References Beresford, P. (2009) ‘Social care, personalisation and service users: addressing the ambiguities’, Research, policy and planning, vol 27, no 2, pp 843-84. Cozens,A. (2003) ‘Taking down the fences: redefining social services in local government’, Inaugural speech, October, London: Association of Directors of Social Services. CSCI (Commission for Social Care Inspection) (2008a) The state of social care in England 2006-07, London: CSCI. CSCI (2008b) Cutting the cake fairly: CSCI review of eligibility criteria for social care, London: CSCI. DH (Department of Health) (1983) The Health and Social Services and Social Security Adjudications Act, London: The Stationery Office. DH (2002) Fairer charging policies for home care and other non-residential social services, London: DH. DH (2003) Fair Access to Care Services: Guidance on eligibility criteria for adult social care, London: DH. Hampshire County Council (2008) Getting personal: A fair deal for better care and support,The report of Hampshire County Council’s Commission of Inquiry into personalisation and the future of adult social care, November, Winchester: Hampshire County Council. HM Government (2009) Shaping the future of care together, Green Paper, London: The Stationery Office. HM Government (2010a) Building the national care service, London:The Stationery Office. 93

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HM Government (2010b) The coalition: Our programme for government, London: Cabinet Office. Means, R., Morbey, H. and Smith, R. (2002) From community care to market care? The development of welfare services for older people, Bristol: The Policy Press. Morris, J. (2003) ‘Barriers to independent living: a scoping review for the Disability Rights Commission’, Unpublished (available at www. leeds.ac.uk/disability-studies). Parker, J. (1965) Local health and welfare services, London:Allen & Unwin. Smith, N., Middleton, S.,Ashton-Brooks, K. and Cox, L. (2004) Disabled people’s cost of living: More than you would think,York: Joseph Rowntree Foundation. Tibble, M. (2005) Review of existing research on the extra costs of disability, London: Department for Work and Pensions. Wanless, D. (2006) Securing good care for older people: Taking a long-term view, London: King’s Fund.

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The social care workforce Good standards of practice and care will only be achieved if organisations have a learning culture which supports the training and development of staff. At an organisational level these developments address structures, culture, systems, human resources and leadership. At an individual level this means keeping up to date through training and post-registration training and learning. If training and development needs are linked to organisational and individual priorities this supports the ongoing enhancement of quality and safety. (Simmons, 2007, p 16)

We have an ageing workforce in council services, particularly direct services, particularly in the biggest growth area – caring…. In the next decade a third of them will be gone. (John Ransford, Chief Executive, Local Government Association, Guardian Public Services Summit, 5 February 2009) Standard Four: Workforce

The wages, terms and conditions of practitioners should be improved to ensure a reliable, sustainable and good quality workforce equipped to work in person-centred ways. They need to be suitably trained, supported and supervised and their views and experience should be valued.

Introduction In this chapter we focus on the social care workforce. Practitioners are a vital element in social care and their role is clearly crucial in the move to and provision of person-centred support. Here we look more closely at how this workforce is treated and how consistent this may be with moves to person-centred support. The basic data about 95

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the social care workforce have been widely reported and are widely seen as cause for concern. While it is difficult to define accurately, the workforce is estimated to number about one-and-a-half million people. It ranges from professional social workers with statutory powers to restrict people’s rights and freedom, to residential and domiciliary workers who are hourly paid. Two thirds of workers work in private or voluntary organisations. The workforce is located in a wide range of policy areas, including housing and health, as well as in specific social care services. Overall the social care workforce has been associated with low pay and poor terms and conditions of work (CSCI, 2008). These are often equated with those of supermarket shelf-stackers and check-out workers (but often with less favourable hours and working conditions). The largest sector of employment, the private sector, also tends to offer the lowest pay and conditions, with wages frequently at or near the minimum wage. Private employers highlight that this is because of the low levels of financial support state funding offers. These are issues that are clearly linked with the problematic funding of social care discussed in the last chapter. The workforce is also linked with major problems of recruitment and retention. It includes disproportionate numbers of women, members of black and minority ethnic communities and also more recently, migrants, particularly from Eastern Europe. Alternative more flexible employment opportunities have become available to women reducing their availability as an adequate pool of labour for ‘caring’ tasks. It is an ageing workforce. Social care has served for many recruits as an entry point to the labour market. For many members it is seen as a temporary job rather than an ongoing career. While the demand for social care workers is expected to rise significantly, with growing demands for support from a growing population of service users, particularly older people, there are serious concerns about being able to maintain even the present supply. It is also important to remember that the social care workforce, both through its nature and status, is neither a powerful nor strongly organised one. Issues of powerlessness and inequality are important for its members, just as they are for the many groups of service users they are intended to support. The route the government has taken in public policy, including social care, to achieve satisfactory services, has been to identify, monitor and regulate ‘standards’. The government has set such standards for the registration and inspection of social care services, most significantly in the National Care Standards Act (2000). These standards include the training and supervision of social care workers. For example, the 96

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National Minimum Standards Regulations for Domiciliary Care state that: Newly appointed care or support workers delivering personal care who do not already hold a relevant care qualification are required to demonstrate their competence and register for the relevant NVQ [National Vocational Qualification] in care award (either NVQ in Care level 2 or level 3) within the first six months of employment and complete the full award within three years. (DH, 2003a, p 33) On the subject of supervision, these standards set out that: All staff [should] meet formally on a one to one basis with their line manager to discuss their work at least [every three months] and written records [should be] kept on the content and outcome of each meeting. (DH, 2003a, p 34) The standard for supervision set out in the National Minimum Standards Regulations for Care Homes for Adults (18-65) is more often, at six times a year (DH, 2003b, p 93). However, the findings of recent research on training and support for social care workers are far from encouraging: Training opportunities are inequitable for different frontline workers. There is also a lack of consensus about the impact of training on practice. (Innes et al, 2006, p x) In this chapter, we look at arrangements for the training, support and supervision of practitioners in the wide range of services that took part in our project. We learn from the views of practitioners working in social care themselves. We also hear what they have to say about the pay and status of social care work in modern Britain. The chapter ends by reviewing the changing roles of social care workers, particularly those of qualified social workers. We examine the possible impact of a less qualified workforce and offer a case study of this process.

Training Almost invariably, when something goes wrong in social work or social care; there is a tragedy, neglect or abuse, then the need for more training is stressed in the public post mortem that follows. Training is 97

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highlighted as a key route to improved practice and provision, although often the nature of that training and how it is related to other issues and pressures is not discussed.

The importance of training In our project, training was not only identified as key for personcentred support. A range of issues were also highlighted as crucial. These included: • • • •

A commitment to training Service user involvement in training The value of reflective practice Addressing black and minority ethnic issues in training

Many participants – service users, managers and practitioners – spoke about the importance of training for social care workers. It is not just staff pay rates but their training opportunities that benefit our service users. Informed staff are better staff. Practitioner

However, the overall picture still seems at best patchy. Most practitioners felt they had received good general training and were well equipped to perform their role. Much of this training prepared staff for taking a National Vocational Qualification, a requirement of the National Care Standards. Although 19% of the social care workforce has no qualifications, two thirds of the workforce has achieved National Vocational Qualification level 2 or above (Skills for Care, 2007, p 47). But a small number of practitioners expressed concerns about services where practitioners do not have sufficient training and how this can affect the users of the services they work for. The government should be more involved in private homes. The staff aren’t well trained. If you know what goes on in a person with dementia’s mind then you have more patience and understand. But if you don’t have any training, then you aren’t going to know, so it makes it difficult. Practitioner I think to overcome these issues we need more training, you know. I am fortunate that I get all the training I should be getting for me to be able to be comfortable to my job, but [it is important] to get in 98

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places where people don’t get any training. That lack of knowledge is obviously very dangerous if you’re doing the work that you do, because it means you need to keep up with things. Practitioner

Some participants spoke about the need for practitioners to have particular skills or knowledge when working with particular groups of service users, for example, people with dementia or people approaching the end of life. They spoke about how crucial high quality training was in equipping practitioners successfully to carry out their work, enabling them to offer a high quality, individualised service to service users. The ongoing treatment of dementia patients when they go into hospital by the care staff [is a problem]. They do not know how to deal with people’s dementia. That is a basic human right for dementia people who have no control over themselves in a sense, you know, and their human rights are being undermined all the time. Their [impairments], the way they are looked after and cared for – all those things [indicate that] there is a lot of work to be done. Carer/relative I think the staff could do with some support, it is difficult to teach it isn’t it, but some input into how do staff broach this subject [the end of a person’s life], (a) with someone who is very ill and (b) with someone who is quite lively really and think they have come for a social life, which I think some of them do. And there is the time factor. It is a very time consuming thing to do, [but] it is essential. Manager

People working at New Chance explained the positive impact that training had had in their organisation. The training and accompanying resources were part of New Chance’s programme implementing personcentred planning across their service. This training had been offered nationally with the aim of reaching all New Chance’s practitioners. [The training guide] is a very good resource, very positive with a good use of examples. Most staff have at least attended a workshop/taster session about PCP [person-centred planning]. Manager My operations manager has recently given us lots of training on how to formulate the initial support plan so that it can be changed and reviewed with the client at the centre. As a team of people 99

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we look at the different angles of how problems can be resolved. Practitioner

One senior practitioner in a nursing home, whose job included training new workers, explained that her approach was based simply on treating service users in a considerate and caring way. Some of the residents are not able to tell you what they want but … I always teach, or encourage the carers who I work with to nurse the residents as they would like to be nursed themselves. Or if you have got a grandmother just think of how you would like them to be nursed. Practitioner

A particular problem can affect training in independent sector home care agencies, since their staff are often paid only for time spent actually delivering a service (Patmore, 2003, pp 7-8). Staff may not necessarily obtain payment for time spent in training and it may thus be harder to engage staff in the latter.

A commitment to training One manager spoke about the importance of being committed to the value of training. She highlighted the issue of training being taken seriously as part of the overall operation of the organisation. She said that services must be prepared to commit resources to a programme of training for it to be delivered effectively and for practitioners to gain the maximum benefit. If practitioners were to take advantage of training opportunities, then these had to be offered at suitable times, not squeezed in between existing shifts. This approach to training shows a commitment to the quality of the service and demonstrates that the service values its workforce. She gave an example of how this could go wrong: Yeah and there needs to be a commitment to staff as well. It was a bit like I was talking about yesterday, I went to the training with five people, two of them worked the night before and were working that night and [then] they were on a full day’s training. Manager

Several other participants spoke in similar terms about recognising that successful training requires more commitment than just arranging training sessions. They suggested that training about person-centred support will only be successful if it is part of a wider strategy for its 100

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implementation. Members of the partnership promoting personcentred planning in Middleshire expressed concerns that training in itself was not effective if the ideas and practices learned were not implemented. They were worried that despite having training in person-centred planning, many services in their area had not put it into practice. This was also a concern at New Chance where managers believed practitioners had resisted the changes required to implement person-centred planning and acted as a barrier to person-centred working.

Service user involvement in training Participants from several services spoke in positive terms about their experiences of service users being involved in training for practitioners. They advocated these approaches and said they had enhanced the training, leading to closer and more equal relationships between practitioners and service users. Service user involvement is embedded in all training. Whatever [workers] are being trained on, there is a service user aspect. It is the theme that runs through it all whether it is moving and handling or food hygiene, there is a service user involvement element to it all, it is woven through everything. Manager … [What] we have found is that [training courses] are far more powerful when we involve the person being supported along with their supporter. So what we try to do is to talk about personcentred planning, person-centred approaches so that people can develop their plans together…. And the whole thing is a lot more powerful that way we find because everyone is involved and all the choices are from the person being supported but together with the supporter. We just find people working together is a better way of doing it. Manager [We have recently been running] courses working round how can people have more of a voice…. We found with our first sets of courses … that we didn’t involve the service users on the course and the supporters were going away and working with the service users back in the home. And we found that [this] was problematic because although they were working together, it wasn’t really a shared experience, and they didn’t really get the idea of personcentred, so they did PCP [person-centred planning] but they 101

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weren’t mentally doing it. So we started to do courses where the supporter comes in but, also the service user comes in as well. Not necessarily every single session but they are working together with us at the same time. It is quite challenging and it is harder to do it but at the same time we are finding it is much better in terms of bringing the ideas together and working together towards a shared experience. It is effective but it is harder and there have been some good results from it. Manager

The value of reflective practice Person-centred support is an interactive process, which actively involves the service user. This highlights the importance of an approach to training consistent with this, which treats the worker as an active agent both in the process of learning and in the organisation. This was reflected in the comments of one manager who spoke about another element of learning that could improve services. We train staff to do the job but not to reflect on our own practice and the way they work. Manager [The induction for new staff has changed]…. Part of it is about person-centred approaches, not planning. The message I want to get across is that you don’t have to go on a five-day course to learn person-centred planning, to work in a person-centred way. You can do something small tomorrow that can have a huge impact. Manager

The idea of encouraging reflective practice is a positive way of involving practitioners actively in the evaluation and development of services. By being asked to contribute to the improvement of the service they work in, practitioners’ opinions are being recognised as valuable. This in turn can help to make practitioners feel valued, as well as drawing in their valuable contributions to benefit the service and in turn the service user.

Addressing black and minority ethnic issues in training The only black service user living in one residential unit spoke about what she saw as a weakness in the training of practitioners working in this service. Her comment raised wider concerns about the cultural

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awareness of the service and how person-centred the support it offered was. I wish there was some more, I’m not having a go at the staff, but I wish there was a course in looking after black skin. If they had thought about it before I moved in that would have been fine. Service user

If a service is working in person-centred ways, then service users’ needs will be considered on an individual basis. A person-centred approach should be based on the needs of individual service users. The needs raised by an individual might prompt a service to add to, or alter its training for practitioners, for example in race equality or cultural awareness, but solutions for individuals will be arrived at on an individual basis, located within an equalities and antidiscriminatory framework. It is likely that deficiencies in a service’s approach to person-centred support may be exposed by failures fully to accommodate a service user’s cultural needs. We found that although services might be working towards person-centred support, there were frequent examples of their failure to achieve this ambition. It should not be forgotten that social care services are as likely as other services or organisations to be guilty of institutionalised racism.

Supervision and support Supervision is a key tool in ensuring accountability, support, learning, professional development and service development. Social work has a tradition of supervision which addresses the outcomes for service users, support for the worker in complex work and decision-making, the professional development of the worker and the development of the wider service. (Simmons, 2007, p 17) Supervision and support emerged as equally important for practitioners as training. Formal supervision can be seen as part of a broader process of ensuring that practitioners have experienced and expert assistance, on an ongoing basis, to deal with the professional, organisational, emotional, ethical and other issues relating to the successful undertaking of their role. In Staff supervision in social care Morrison identifies eight drivers for supervision (Morrison, 2005, p 19). Along with standards set by professional bodies, he cites greater integration between services demanding more complex staff roles, employer liability for duty of 103

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care to staff and the speed and stresses of change. He concludes that supervision only improves outcomes for service users and adds value for staff, if it has clarity of purpose, emotional competence and is service user-centred. Clearly if the aim is to maintain good practice or support staff to work in different more person-centred ways, we can expect that adequate supervision and support will be at a premium. Supervision can take many forms. It may mean one-to-one meetings between a worker and a supervisor and sometimes group meetings. It can mean regular meetings, perhaps weekly or monthly, or even annually, or it may take the form of ad hoc trouble-shooting sessions. There are an enormous variety of approaches to supervision, which can be more and less supportive to staff (Patmore, 2003, pp 28-37). Home care supervisors sometimes covertly follow a worker, calling at service users’ homes minutes after the worker has departed, to assess results. Methods like this in part reflect the difficulty in supervising staff through meetings if, as is common in independent sector home care, neither provider nor purchaser will pay for the supervisee’s time (Patmore and McNulty, 2005, pp 60-1). Staff understandably often decline unpaid supervision sessions. A depersonalised form of supervision through observation of staff is now possible using a recently marketed technology. Using telephoneactivated, automated monitoring systems, the actual work routine of a home care worker is continuously compared by a computer with the routine programmed by managers. Whenever the former deviates from the latter, an email to a manager is triggered automatically (Patmore and McNulty, 2005, pp 64-5). Such an approach could hardly be further removed from the ideals of supportive supervision which participants in our study highlighted. The final report of the Social Work Task Force highlighted the limits of supervision and support for qualified social workers (Social Work Task Force, 2009). We can expect that the situation for unqualified staff is likely to be worse.

The unreliability of supervision and support Practitioners reported very different experiences of supervision and support. This was closely linked with how valued they felt in their work. There were examples of organisations and services which offered frequent supervision and where practitioners felt valued as part of an effective team. All staff have supervision and annual appraisal which is an opportunity to plan their own personal development, learning 104

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etc. There is a lot of training on offer, a lot of in-house training. Staff have to have NVQ [National Vocational Qualification] level 3. Manager

However, there were also cases where staff did not feel supported or valued. This picture is backed up by a national survey which suggests that nearly a quarter (23%) of social care workers receive no supervision (Skills for Care, 2007, p35). There was strong consensus, which also extended to managers, that supervision was very important. However, this did not necessarily result in the provision of good or adequate supervision. Some practitioners said supervision was supposed to be provided regularly in their service, but in practice it took place less often than they were told it would and was not regular. One manager explained that as holding supervision every two months was a requirement of care standards in the service she managed, this system had been put in place. But this was not the general picture. I think some people at our’s haven’t had theirs for six months. The other day they promised this person to have it every two months, but it had been cancelled and six months had passed with no supervision. Practitioner I don’t know what’s happening with supervision. It’s all over the place…. I would like to know where I am going and if I am doing things right. Practitioner

Other practitioners said they receive excellent support and supervision from their managers. They spoke of positive experiences of being involved in the operation and development of services. The positive effects where a service made a commitment to ensure proper supervision and support can be seen from the following comments. All came from practitioners working in services in one authority. The support and supervision from the management is second to none. It’s great to talk to someone and know that you are doing things in the right way and be encouraged to do it, and feel that you are doing a positive job, it really helps you.… I have never had so much supervision in my life! Practitioner

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Yes, things are taken on board. It might be taken up later in supervision if it needed to be…. You can have your say and not be frightened about having your say. Practitioner The best thing is the management of the place. It’s terrific, [name of manager] and [name of deputy manager] are great managers. There is a nice friendly atmosphere, not at all petty. Everyone works together as a team. Practitioner The input is pretty good actually. Our manager is very good, very down to earth. I genuinely believe that if there was a situation when people fundamentally disagreed with [name of manager], he would listen to it and act accordingly. At a lot of places, you become a manager and lose touch with your staff, but not here, it’s very democratic – a terrific place to work. Practitioner So it’s battling away with social services rather than the management structure at the Barry Centre. Practitioner

A strong sense also emerged that other pressures on organisations and services could get in the way of support for staff and that during busy periods particularly, supervision was sacrificed. If this is the case, it suggests that supervision is not being treated as a priority in service provider organisations. This in turn contributed to a sense of being undervalued among practitioners. It also communicated itself to service users. For example: These girls here are run ragged. I have seen staff cry because they don’t feel they have done justice to us. They should never have to feel that way…. They finish up in tears nearly, especially new ones that come along. Service user If the situation doesn’t change in terms of managerial support, then [staff] won’t stay long and they have got to retain them once they get them. And therefore the ethos of the place has to be right. They have got to see this is a place that they want to work in and that is up to management to make sure that happens. Carer/relative

Trading on practitioners’ commitment These comments suggest that the good nature of staff and their commitment to their work is sometimes taken advantage of by services. 106

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Practitioners may put up with poor support because they are committed to the service users they work with and with providing high quality support. I think that’s what gets played on [practitioner’s caring nature], and I think the sort of nature of work that we do, what I would appreciate more than a pay rise, is some good access to some good clinical supervision. Practitioner

One manager’s comments suggested that the variety and enjoyment of the role were what motivated the staff she worked with. We are extremely lucky with the staff. They all give over and above, because they enjoy the work. It is dynamic and lively, every day is just so very different. Some days can be quiet. Others are just madness all day – which is great! Manager

The need for emotional support The other side of this picture, however, is the stresses and strains such work entails, making good support and supervision all the more necessary. One practitioner’s comments highlighted not only her deep commitment to the welfare of people using the service she worked for, but also the emotional impact her work had on her and how that affected her life outside work. Issues are also raised about the tensions there may be between ideas of professionalism and the empathy and understanding of the practitioner and the important part supervision and support have to play in exploring and negotiating these. I think just a place to offload [is what’s needed]. And you know I have [often] been accused by a manager of not being detached, being too involved, but that’s who I am and I think that’s why I’m often pretty good at my job. I’m probably pulled up heaps, but I do really care, and I’ve sat with someone last week all day who was suicidal and she has three children, I can’t stay detached, and yet there are a whole load of issues and it really affected me at the weekend, you know, and stuff gets triggered in your own life. Practitioner

The mixture of formal and informal support that was available at one service had made a positive impression on one practitioner which she compared favourably to her previous work experiences: 107

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Well there is a lot of peer group support because we work very closely within our teams. But having said that our manager and deputy manager are very aware of what is happening on the shop floor as well. So their door is never closed either. And again we have had fantastic support and given fantastic support from relatives and next of kin. Whether you like it or not, you are more often part of an extended family, living within an environment like this. It is very different to a hospital setting in that respect. Practitioner

Staff working in residential homes for older people spoke of the emotional strain they experienced when residents died. This is a relatively frequent occurrence for practitioners working in such settings, but training and support about this issue were not routinely available to the practitioners we spoke to. And we’ve had in the past counselling for staff from the hospice team. Because if someone has died suddenly that is the worst thing for the staff to deal with. Because they may have been on duty the day before and that person is perfectly alright. They come on the next morning and they have died and it is a great shock. Practitioner If I’m stressed out, I would like to be able to just come into a room and talk to my supervisor or manager about it and I don’t want it spread about what my problem is, rather than keeping something bottled up, I’d like to vent it out. Practitioner

It is particularly distressing when a home care worker on their own, discovers the death of a service user, who they know well. Services need contingency plans for a rapid supportive response in this situation (Patmore and McNulty, 2005, pp 56-7).

Support to feel part of the organisation Supervision and support are important in relation to people’s practice, but they have a helpful role to play beyond that. One practitioner made the point there was no structure to report difficulties or discontent in her organisation. This was a source of frustration and disempowerment. Such a structure might exist in the service but she was not aware of it. I mean in our organisation, there’s no way for you to comment upwards, so if you’ve got a manager that you’ve got major problems, 108

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you could make a huge stink about it, but something like that there is no channel. Practitioner

In Wendlbury, the Glen Trust was conducting an internal review of services. The likely outcome of this review was unclear to practitioners and the security of their jobs was of major concern to them. This insecurity led to tension in the service. Practitioners noted that they had been given no clear reassurance about the future prospects for their jobs, a factor that led them to feel unsupported and unsure about the future. They have said that we will have a job. Others have said we will have to reapply for our jobs. Practitioner No one has been around to say your job is secure. Manager

Support for practitioners to have a say Both practitioners and managers also highlighted another important expression of support for service workers. This was support from their managers and organisations to have a say in what happens. Several practitioners spoke about the importance of having discretion to make decisions and being supported in this by their manager. This clearly contributed to their sense of feeling valued. It meant they could use their practice skills to the full and make a meaningful contribution to the service. It stands in stark contrast to the sense that has been strongly communicated since the care management reforms, that managerial and financial criteria are likely to take precedence over professional expertise (Dustin, 2007). I feel more empowered, instead of asking ‘Can I? Should I?’ It’s more making decisions now, standing on my own feet and having the confidence when I take things back that I will be listened to and hopefully those actions will be carried out. I am taken seriously ... Before I was waiting to be fed information down, but now I am hearing it first hand. Practitioner [Senior manager’s name] just lets me get on, which is nice. He is there to manage and support me. I ring him up for most things. Manager

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[They care] otherwise they wouldn’t be doing this job, because they are not doing the best paid jobs on the planet. What they want is a manager who understands when they want to deviate from the odd daft rule and support to do that within the risks that are available. Manager I think we have so much flexibility in terms of making our own decisions when we are meeting with our service users. It’s not a matter of you have to go back to your manager all the time. Practitioner If you have an idea and it’s a goer they will let you develop it. If it falls on its face, no one will think anything less of you. Practitioner

This contrasted with the experience of another practitioner who spoke of a lack of understanding and trust from a manager: I think management need to be a bit more understanding about the workload of staff…. Paperwork … does take a lot of time. Things don’t always work and [to] do that at the same time…. Crises come up every day. Every day’s different. You don’t know what you’re going to walk into. You don’t know what’s going to happen from one day to the next and if something [arises] unexpectedly … you’ve got to prioritise…. It’s more important than paper work. Practitioner

Characteristics of a service that supports and values its workers A number of characteristics begin to emerge from what practitioners, service users and managers said, which typified a service that supported and valued its practitioners. While many services may feel unable to increase rates of pay for their workers, making changes to improve such conditions of a service, need not prove costly, but seem to have a major impact on practitioners’ ability to work in more person-centred ways and lift their morale and sense of satisfaction, as well as improving the quality of the service overall. These include: • Regular supportive supervision • Regular team meetings • An open and supportive atmosphere at meetings where people feel happy to express views and ideas

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• Valuing contributions from the whole team, irrespective of length of service or seniority • Ideas from practitioners are acted upon and implemented by the service • A down to earth, approachable management style • Practitioners empowered to make decisions within agreed values and principles • Early and open communication about important changes within a service There are some clear parallels between these components and the definition of person-centred support which we discussed in Chapter Two. Themes of open communication, listening, involvement, being empowered to make decisions and being supportive, are common to both. As has already been suggested (Sanderson, 2000), we are unlikely to move closer to the development of person-centred support unless staff themselves are treated in person-centred ways. In other words, a person-centred approach needs to underpin all aspects of both the process and goals of service provision. However, this can be more difficult to achieve when staff are isolated and do not work in teams which meet together, formally or informally. It is important to recognise that an increasing number of social care staff work without team mates and in the case of staff employed directly by holders of personal budgets, without a manager or supervisor distinct from the service user. So while as disabled people have highlighted, the job of personal assistant (PA) can be a more supportive and creative one, the worker may have fewer lines of support, unless efforts are made to challenge this. The new dominance of independent sector agencies as providers of publicly funded home care means that many home care staff work on their own, rather than with colleagues. Unlike directly employed local authority home care services, independent agencies rarely hold team meetings because their staff do not get paid for such time (Patmore, 2003, pp 7-8). Consequently, workers generally do not meet each other, except when two are needed for a lifting task. Putting People First (DH, 2007) is likely to increase the numbers of staff who are directly employed by service users and whose work relationships are thus primarily with service users. This raises questions about how staff morale, sense of satisfaction and the goals of supervision can best be addressed in these situations. The principles which we have set out will need to be translated to these circumstances.

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Pay While the government has repeatedly placed an emphasis on the need for a skilled and well supported social care workforce, its pay and status are still low. In their 2007 survey, Skills for Care found that the average wage for social care work was £6.87 per hour. Private sector rates of pay tend to be lower than those in statutory services and many workers are paid around or little more than the minimum wage (Skills for Care, 2007, pp 6,39). This disadvantage is seriously compounded for the enlarged independent sector home care workforce by non-payment for time spent travelling between service users. Frequently, even such transport costs must be met from the worker’s low pay (Patmore and McNulty, 2005, pp 59-60). Independent agency staff have replaced many local authority home care staff, who were paid for both time and costs of travel between customers. Along with reductions of premium rates for anti-social hours, this represents a harsh reduction in payment for home care workers. Given the generally low rates of pay for face-to-face practitioners in social care, surprisingly few participants mentioned low pay or seemed to regard poor pay of practitioners as a barrier to person-centred support. On the other hand, many more people spoke about the importance of supervision or feeling valued. Perhaps this is a measure of the commitment of the many practitioners we spoke with, as well as the fact that poor terms and conditions may have come to be taken for granted in social care. Typical comments about low pay in social care included: Staff should be paid more. Not known I think for me, that’s something that [would help improve the service], you know, staff being valued, paid well. Manager It’s not a job you just do for the money…. You do get very involved with the people you are looking after. You are with people 24 hours a day. You’re probably with them longer than what you are [with] your husband, so you do get very involved. Practitioner

Nonetheless, because of the generally low pay and status of social care work, services continue to experience problems recruiting and retaining practitioners. They frequently find themselves in competition with

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other local employers. Many of the alternative jobs available can be more flexible and involve less responsibility than work in social care. It’s a very responsible job on [your] own in a client’s home, feeding someone who is at risk of choking, who may die in your care. That’s a lot of responsibility to take for £6.40 an hour when you can get that working in a supermarket – and get cheap groceries too! Practitioner The local supermarkets are really good at providing any hours that people want. So if you have mums with restricted working hours that they can do, supermarkets are now brilliant at saying ‘Well OK, those hours will suit us.’ … When you look at what we expect of our care staff, and the standards we expect from them and the workload, and the responsibility of care, then if people are not really committed you can understand why they go elsewhere and they need the money to live. Some people want to do care work but can’t afford to do it. Manager

We spoke to practitioners who had taken on additional jobs to supplement their income, or who had several part-time jobs within the field of social care. One spoke of the negative knock-on effects that this might have for service users. And if you do extra hours and then you get tired, if you are coming in, in the morning and you’re tired, you don’t have time to be nice to people and do person-related support really. Practitioner

Status In their 2007 survey Skills for Care found that while 90% of people working in social care were happy with their jobs less than half thought that their work was appreciated by the general public (Skills for Care, 2007, pp 6-7). Those taking part in our project generally spoke more about the poor status of jobs in social care than the low pay. This may have been due to being embarrassed to talk about money, or not wanting to be seen as mercenary. However, the following comments are typical of the responses made by a large proportion of participants when asked what could be done to improve services. Here the connection with the poor status of social care work was explicitly made. It was seen as a major problem. Raising the status of social care employment was a priority for service workers. 113

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To see that the job’s actually a valuable job, not just to say I want to do care work, but that I want to make a career. Manager Raise the status of [paid] carers. It would help tremendously, they do a wonderful job and it’s just, they don’t have the backup. They are rushed from here to there. They don’t feel they can do the job they would really like to do. Practitioner

Innes, Macpherson and McCabe point to a wider barrier to improving the status of social care work. In terms of the value associated with frontline work, it seems that lack of knowledge of the tasks performed by frontline workers stands as the greatest barrier to a positive image of this role. (Innes et al, 2006, p 42) Another practitioner contrasted her existing job with a previous job to highlight the importance of status and motivation. I worked in the hospital which was horrendous. It was just back to back wet-beds and sick. This is lovely. You feel like you can go away and you have had a nice time and other people have had a nice time, so there is a sense of achievement rather than just sticking plasters the whole time. You don’t feel like you are always working at crisis point. We are very lucky really. We are offered a lot of training and chances to develop ourselves. They are always encouraging us to do new things. Practitioner

Inadequate staffing levels Another routine and major barrier facing the workforce was the frequently inadequate staffing levels in services. This limited the potential for person-centred support. We’re always juggling and that makes it difficult to give people the support they want. Practitioner Sometimes it is difficult to give one-to-one time. You can’t because there are other jobs to do. Practitioner … there isn’t enough staff there. Service user

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It’s like a snowball. You start with a small idea. You start it rolling. It gets bigger and bigger and it comes a point where the work you are doing in that area then has impact on the rest of your work. So people say,‘Stop. You can’t do that any more,’ regardless of the need. It’s a little tiny drop in this great big ocean of need and at the end of the day, you only have limited resources and you have to then stop and move on. I find that incredibly frustrating. Practitioner You sometimes feel it; there are other things I need to do, like cycling and sometimes they say they can’t do it because they are too busy or whatever, so sometimes it is difficult. So it’s not so good for individual things you need to do. They are nice people, but sometimes they do struggle a bit. Service user

The ‘ratio’ of practitioners to service users varied greatly from service to service and had major implications for person-centred support. Basically being residential we can have 14 people living in one house with three members of staff. So there becomes a limit to how much you can actually work with people in a person-centred way. It is very difficult to do a lot of one-to-one. Manager We have more ratio [of practitioners to service users] and they [service users] do get out and they are able to say more what they want a lot more. Practitioner

In Camchester service users and relatives explained some of the consequences of having a low ratio of practitioners to service users, living in larger residential and nursing homes. For example: I don’t know if they are short-staffed or whatever, but when she was at home and she needed care, it was there immediately. Now it certainly isn’t here, because obviously she hasn’t got anyone in her room 24 hours a day. She is very worried about this colostomy and there has been occasions when the bag has been full and my mother has wanted it changed and they haven’t been able to and it has either burst or whatever. So we had problems with that because they hadn’t been able to do it there and then. So it isn’t instant attention, but I can understand why because they haven’t got the people here to do it. But it can be distressing. The staff are wonderful, absolutely wonderful. I have no criticism whatsoever but it is the numbers, it is a numbers game. Carer/relative 115

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A service user with a life-limiting condition talked about the stark difference in staffing levels between a hospice and a nursing home. Virtually one-to-one care, which for terminal patients is very beneficial. When I came here [nursing home], that all had to change, because you just haven’t got the staffing levels here to give that one-to-one. Service user

In one project, service users raised the issue of the problems created when staff were absent. Levels of sickness and absenteeism are associated with staff conditions and morale, which as we have seen, are far from ideal in social care. If you want to go somewhere, they try to help. I think a lot of it revolves around staff absence. So in a lot of ways we can’t do things that we’d like to. There always has to be one person in the building at all times. For the health and safety of other residents. Service user We ask when are they [sick staff] coming back. Sometimes they get better and then go off sick again. Are they fit enough to do the job? Some are off for three or four months. You keep asking,‘When are they coming back?’, but you don’t get an answer. Service user If one person gets a cold they all get it very quick. Service user Always here people go off sick. Service user

A senior manager from this service said: Given the residential model, we are vulnerable to absences and the first thing to go is the one-to-one that isn’t life or death, hands-on care. Manager

Practitioners explained that staffing limits meant that it was often difficult to support work with individual service users. This got lost in the face of routine responsibilities. There is not enough staff time for spending one-to-one. Residents have to go with the group, rather than go with their own choice of outings and things. We need more support, more one-to-one. There’s lots we would like to do that we can’t do on a one-to116

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one…. Time is of the essence and 13 others need looking after. Practitioner There’s always a lack of money, but that’s government. We can’t do much about that…. For more staff, to do more intense work with people or to do outreach work, there isn’t the time to do that…. I think it would be nice if there were more staff available here who could take people out into the city, to do their shopping and go to the library, that sort of thing, particularly people that live in establishments, who don’t get much chance to go out and have that independence. Practitioner One-off goals are more achievable. It’s sustaining the goals if they are continuing. It’s ensuring that support is in place to do that every week – because of the staff situation. There is a resident who goes on a swimming course every week. He would like to go twice a week, but that is proving quite difficult. Getting that extra person to come in, the funding for another person to support for another day, is very difficult. Then you have to say there’s like 12 other people and if one person is having so much one-to-one time and support is it fair to everyone else? It is very difficult. Practitioner We need more support for us to do things with staff, like taking us to the hospital [in case I need to write anything down]. It is hard to get staff support for appointments. Service user

The restructuring of social care roles So far in this chapter we have discussed the social care workforce and what may be helping or hindering it to work in more person-centred ways. It is important, however, to recognise the diversity and constantly changing nature of this workforce. People working as practitioners in social care have a wide range of experiences and backgrounds. They are also organised into a wide variety of different roles which include residential, domiciliary and fieldwork staff. While the qualified social worker is the professional role most closely associated with social care, other professionals also play an important part in this field, including occupational therapists and nurses. Big changes have taken place in the roles and tasks of social work and social care workers. The 1989 Children Act and 1990 National Health Service and Community Care Act (DH, 1989, 1990) are key markers for this. Changes in aims and ideology have led to the development and 117

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prioritisation of managerialist, consumerist and technicist approaches to social care policy and practice. This has impacted at all levels, in all services and sectors and on all social care roles (Dustin, 2007; Drakeford, 2008; Ferguson, 2008). In 2009, following the inquiry into the tragic death of ‘Baby Peter’ the government set up a social work task force which proposed the radical reform of all social work, including that with adult groups and led to the establishment of a Social Work Reform Board for England charged with the task of making this happen (Social Work Task Force, 2009). An official search has also been on to find the ‘reserved’ tasks of social work; that is to say, tasks which only social workers are seen as able to do. However, these tend to be preoccupied with social control and ignore the reality that by undertaking more mundane day-to-day tasks, social workers can build the relationship and trust that then enable them to undertake the complex and difficult tasks they are capable of (Beresford, 2007; DCSF, 2010). Ironically, there are now concerns that the government’s push for personalisation will have further effects, which may not be consistent with moves to more person-centred support. There are widespread fears that social work jobs will be cut or diluted as policy moves away from care management to a model of provision based on self-assessment, self-directed support and improved access to mainstream services. This has been reflected in headlines in the social care press like: ‘Council to increase number of non-qualified staff in personalisation reforms’ (Samuel, 2008), as well as increasing social worker concerns about the implementation of personalisation (Community Care, 2010). Dealings between workers and service users have increasingly been restructured as transactions, rather than relationship-based interactions and negotiations. They are timed and evaluated on the basis of readily quantifiable outcome measures. There is pressure on professionals to spend less time with service users and for contact increasingly to be electronic or by telephone. The roles performed by qualified social workers have changed dramatically in the last 20 years. Roles that were once solely performed by qualified workers are now often performed by staff without formal social work or with other qualifications. Thus the approved social worker (ASW) role in mental health, valued for the social approach that helpfully underpins social work, has been replaced by that of the approved mental health professional (AMHP), now also recruited from more medically orientated professions. The making of assessments was once the preserve of qualified social workers, but since the 1990s 118

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has often been undertaken by domiciliary care assessors who are not qualified social workers. An increasing reliance has been placed on call centres with (unqualified) workers following pre-set scripts to deal with service users and new referrals. In 2008 the Commission for Social Care Inspection, predecessor of the Care Quality Commission, reported that: A frequently made claim was that social work was becoming ‘de-professionalised’; the need to meet performance indicators particularly on speed of response was cited as an obstacle to reflective practice. A service-led approach to assessment appeared to be entrenched in some councils. This was felt to be a particular risk where staff who did not have a professional social work background were involved in assessment. (CSCI, 2008, p 24) The extension of direct payments and personal budgets is meant to result in an increased role for self-assessment by service users. In this way they will be increasingly involved in the design and commissioning of their own personalised service. While this has been advanced as a liberating development, many social workers are concerned that moves away from employing qualified social workers in the process will be to the detriment of service users, and mean that social work skills are side-lined, the profession will shrink and its skills be lost to the social care system. They fear that non-qualified or non-social work qualified staff will lack their skills and experience and may have a narrower, more individualised, service-led view of the service users’ entitlement, abilities and potential. These fears were recognised by the Commission for Social Care Inspection, particularly in relation to screening or helpdesk services operated by local authorities. It was striking that in the councils in this study, the gatekeeping role was increasingly undertaken by people without a professional social work background. There need to be adequate safeguards that people with eligible needs are not excluded at an early stage from any further consideration or assessment of those needs. (CSCI, 2008, p 26) Many service users, on the other hand, take a different view. They feel that social workers have frequently failed to act as their advocate. Instead of supporting the independent living of service users, they have implemented the controlling and rationing regimes of their agencies.

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They can also see gains to be got from moving away from a system based on conventional academic qualifications, to one which embraces diverse perspectives and values lived experience. Although many social care practitioners may not be qualified as social workers, they may have a range of life experiences that qualify them to work supportively and empathically with service users. A preoccupation with conventional education and qualifications may exclude service users and members of black and minority ethnic communities who may have much relevant and useful experience to offer. Service user advocates too, informed by the social model of disability, can have a valuable role to play in assessment. Innes, Macpherson and McCabe argue for the importance of the qualities offered by staff rather than just their qualifications. The value attributed to frontline health and social care work by managers, other professionals, the public and Government suggests too much attention to the professional status of workers, and not enough to the qualities that frontline health and social care workers both deliver and offer. (Innes et al, 2006, p 42) A case study from a service which took part in our project helps to demonstrate the complexity of this issue. It can be seen as an example of how unqualified staff are carrying out roles that traditionally would have been undertaken by social workers and how they can offer informed, understanding and supportive assistance to service users, regardless of a lack of formal social work qualifications. At the same time, it points to some of the problems that such arrangements may pose. Case study Changing social care roles In Grandshire the Disability Development Workers (DDW) service was set up to offer person-centred support to service users who were not eligible for support because they fell outside the eligibility criteria of Fair Access To Care Services (FACS) established by government. Their work is communitybased and intended to be preventive. Disability development workers provide people with information and support. As they put it: We exist to ensure that disabled people and their carers in Grandshire have access to information and support and to explore opportunities and choices in their lives. ‘Disability development worker’ information leaflet 120

The social care workforce Our work is centred by clients, their views, and the way we work should be [shaped by] what clients want. Disability development worker The service aims to assist disabled people to gain access to mainstream services and to work together to ‘find their own solutions’ and improve the quality of their lives. They take referrals direct from disabled people, or from the local authority access service that works with them. The team is well managed and has a strong identity. Its workers cover different areas of the county, but frequently work together. Workers have built up extensive local knowledge and work with a range of partners on a local and countywide basis. [Disability development workers] start by asking people what they want to do and then look for opportunities so they can do that. Service user The disability development workers job grew out of the ‘coordinators of creative activity’ role developed at a local day centre. While local social workers have increasingly been occupied with care management and crisis intervention, the disability development workers have taken on a more preventive, community social work role. They appear to have filled the gap left by social workers’ changed responsibilities. The difference in the roles of disability development workers and social workers in Grandshire can helpfully be seen as disability development workers working ‘upstream’ to support disabled people in preventive, proactive ways that reduce the chance of the people needing to go on and use services (Smale et al, 1996). Social workers in turn are seen as working ‘downstream’ with people who have already reached crisis point and need emergency support. The disability development workers service can be seen as an innovative reinvention of the social work role within restricted budgets. However, the disability development workers are not qualified social workers and are paid much less. The differences between the roles were highlighted when a qualified social worker took up a disability development worker’s job despite a pay-cut of around £8,000 per annum. She said she was attracted to the role because it was working in the way she had wanted to practise when she qualified. Comparable developments can be seen in other fields, with, for example, the development of nursing assistants in health and in the police service, taking on more on the day-to-day face-to-face activities previously undertaken by professional social workers.

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Supporting people There has been some tension between the disability development workers and local social work teams, although more recently efforts have been made to build closer relationships. Sadly it’s seen that the disability development workers have got the cream. Manager They’re seeing a worker going out creating something, not even getting money from the Department. They’re fundraising and the social workers are saying, ‘These are things that we would like to do but we’re actually constrained in this legislative framework.’ Manager There are two key risks facing Grandshire in this respect. First, the disability development workers service’s future cannot be seen as secure as it is largely working outside the FACS eligibility criteria funded by the local authority. Second, the local authority may come to see the disability development workers as offering the standard model of working and cut skilled and qualified social work posts in favour of unskilled roles. Local managers are aware of the difficulties and divisions and are seeking solutions. [Disability development workers and social workers are like] two different machines working alongside each other, but not necessarily doing the same job any longer. Senior manager However, it must be emphasised that the work of the disability development workers has locally been seen as progressive and high quality. The disability development workers are well supported, but have a high degree of autonomy in their work. The team also has a significant proportion of disabled people working as disability development workers, bringing direct experience to the role. The team may also benefit from not being social workers, particularly for those service users who have had negative past experiences of social workers. One disability development worker described how the service had distanced itself from mainstream adult services to get away from: ‘Us and them’ attitudes in social services where service users are seen as the ‘enemy’ [There is a] protective shield which social services staff have around them. Disability development worker

CASE STUDY ENDS

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Roles and tasks in social work and social care are an issue we return to in the last chapter of the book where we explore change and making change, drawing on the evidence we have gained.

Summary Successful moves to personalisation and more person-centred support demand a highly skilled, well trained and well supported workforce. Yet the poor terms and conditions of the present social care workforce are at odds with this and associated with low retention and high turnover rates. As a result, while the expectation is that a larger social care workforce will be required for the future, there are currently concerns about the feasibility of maintaining the workforce at its present level. The reality of modern UK social care, emerging from our evidence, is that practitioners frequently feel undervalued and unsupported. Despite the importance practitioners and services attach to appropriate training, in practice, training is limited and patchy. There are wide variations in the availability and quality of staff supervision and support, with many practitioners receiving little or no supervision. While few practitioners make explicit reference to low pay, it is linked with the generally low status of social care work in the UK and this is seen as a major problem. Although services may not be able to afford to pay their workers more, improvements in the supervision and support staff receive, while not necessarily costly, can have a disproportionately positive impact on morale and effectiveness. We came across both good and bad examples of training, support and supervision for staff. This emerges as a factor which can have a huge impact on both the experience of practitioners, and in the overall effectiveness of the services involved. Inadequate levels of staffing also create major barriers in the way of person-centred support. Staff-service user ratios vary significantly and not necessarily in relation to need. Staff absenteeism increases the difficulties of responding to service users on an individual basis. The roles and tasks of the social work and social care workforce have been going through major changes, relating to shifts in ideology and organisation. We look in more detail at this complex issue through a case study of unqualified staff working in roles that would formerly have been undertaken by professional social workers and consider some of the implications this may have.

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References Beresford, P. (2007) The changing roles and tasks of social work from service users’ perspectives:A literature-informed discussion paper for the review of social work roles and tasks in England, London: General Social Care Council. Community Care (2010) Personalisation, Special report supplement, Community Care, 20 May, pp 14-25. CSCI (Commission for Social Care Inspection) (2008) The state of social care in England 2006/07, London: CSCI. DCSF (Department for Children, Schools and Families) (2010) Building a safe and confident future: Implementing the recommendations of the Social Work Task Force, London: HM Government. DH (Department of Health) (1989) The Children Act, London: HMSO DH (1990) The National Health Service and Community Care Act, London: HMSO. DH (2003a) Domiciliary care, national minimum standards regulations (in accordance with Section 23 of the National Care Standards Act, 2000), London: The Stationery Office. DH (2003b) Care homes for adults (18-65), national minimum standards, care home regulations, February, London: The Stationery Office. DH (2007) Putting People First: A shared vision and commitment to the transformation of adult social care, London: The Stationery Office. Drakeford, M. (2008) ‘Social work and politics’, in M. Davies (ed) The Blackwell companion to social work (3rd edn), Oxford: Blackwell, pp 303-10. Dustin, D. (2007) The McDonaldization of social work,Aldershot:Ashgate. Ferguson, I. (2008) Reclaiming social work: Challenging neo-liberalism and promoting social justice, London: Sage Publications. Innes,A., Macpherson, S. and McCabe, L. (2006) Promoting person-centred care at the front line,York: Joseph Rowntree Foundation. Morrison, T. (2005) Staff supervision in social care (3rd edn), Brighton: Pavilion Publishing. Patmore, C. (2003) Understanding home care providers,York: Social Policy Research Unit, University of York. Patmore, C. and McNulty,A. (2005) Caring for the whole person: Home care for older people which promotes well-being and choice, Well-being and Choice web publications (www.well-beingandchoice.org.uk/Caring4.pdf). Samuel, M. (2008) ‘Council to increase number of non-qualified staff in personalisation reforms’, 13 August (www.communitycare.co.uk/ Articles/2008/08/13/109121/personalisation-in-wirral-meansfewer-social-workers.html). Sanderson, H. (2000) Person-centred planning: Key features and approaches, York: Joseph Rowntree Foundation. 124

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Simmons, L. (2007) Social care governance: A practice workbook, London: Social Care Institute for Excellence. Skills for Care (2007) National survey of care workers, Leeds: Skills for Care. Smale, G., Tuson, G. and Statham, D. (1996) Creative social work, Basingstoke: Palgrave Macmillan. Social Work Task Force (2009) Building a safe, confident future: The final report of the Social Work Task Force, November, London: Department for Children, Schools and Families.

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Social care and carers Of adults with a learning disability living in the community, 52 per cent live with their parents and 12 per cent with other relatives. (Disability Rights Commission, 2007, p 34) Standard Five: Carers

Policy and practice based on person-centred support should ensure appropriate support to service users, their families and friends, instead of placing increasing reliance on family and friends to act as ‘informal carers’. Services should support individuals to exercise choice and control while respecting the values of love and mutuality in relationships.

Introduction In this chapter we focus on the unpaid support which service users receive from those close to them – ‘informal carers’ as they have come to be called. Such unpaid ‘caring’ is a complex and highly contentious issue. Over the last 30 plus years, governments and policymakers have placed an increasing stress and reliance on such support. They have emphasised that most of the support that service users receive comes from such informal carers, rather than the paid workforce examined in the last chapter. We are regularly told that ‘There are almost six million unpaid carers of adults in the UK…. Without them, the social care system would collapse’ (Hampshire County Council, 2008, p 65). Here we look at how such arrangements work out in practice, their implications for person-centred support and to what extent they may be consistent with service users’ choice and control over their lives. The term ‘carers’ or ‘informal carers’ has come to be used particularly in relation to support provided for people by their family, friends and neighbours. Most often, it means support provided by people’s families and loved ones. Such ‘caring’ can embrace a very wide range of activities and relationships. It may mean providing support to a sibling, 127

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partner or offspring. The need can arise at any time in our lives – from when we are still at school, to our own old age. It may entail some modest help with routine day-to-day tasks like shopping or cleaning, to help with the most intimate activities of daily living ‘twenty four seven’, as some carers put it. The need may arise because of someone’s physical, sensory or intellectual impairment, through mental distress, chronic illness or increased physical and mental frailty linked with older age. There are now particular concerns about greatly increased needs following from rising rates of Alzheimer’s with the growing numbers and proportions of old and very old people in western societies. There are now large ‘carers’ organisations in the UK, like Carers UK and the Princess Royal’s Trust for Carers, as well as less well known campaigning groups like Carer Watch. But the reality is that most people who act as carers have little support and access very limited information and capacity building to take on the responsibilities that they carry out. The strategy of large carers organisations over the years has primarily been to emphasise the financial savings made to the state through the unpaid role of such carers. This is currently estimated to be in the realm of £87 billion a year – more than the annual spend on the National Health Service. Twelve per cent of the UK population are estimated to provide such unpaid care (Buckner and Yeandle, 2007, pp 1-2). Charities and campaigners have sought to use this as a lever to increase support and benefits and improve conditions for carers. Governments, however, have not been greatly responsive to the efforts of carers and their organisations. The government’s Carers’ Strategy announced in 2008 (DH, 2008) was generally greeted by the carers’ lobby as offering too little too late. In 2008, Caroline Glendinning and Hilary Arksey, building on the work of Julia Twigg (Twigg, 1989), set out four approaches to carer policy in health and social care. These are: • Carer as resource: treating carers instrumentally as a resource to be used, supporting their wellbeing to maintain ‘care-giving’; • Carers as co-workers: recognising their interests, but still primarily to maintain their functioning; • Carers as co-clients, where carers’ wellbeing and needs are recognised in their own right and services provided to support them; • The superseded carer, where services are provided to support service users, enabling carers to achieve independence. (Glendinning and Arksey, 2008, p 224)

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They conclude that current policies are primarily based on the ‘carer as resource’ model and suggest that ‘until the conceptual model underpinning shifts, it is likely that carers will continue to experience negative outcomes in their health, employment and finances’ (Glendinning and Arksey, 2008, p 223). Research evidence suggests that the most effective way of supporting carers is by providing services for older and disabled people (Glendinning and Arksey, 2008, p 223). However, reliance on unpaid care is unlikely to continue to be tenable in the longer term. There is not expected to be the necessary supply of informal care. Changes in family and household make-up, geographic, social and economic change, are all likely to have an adverse impact. • As adult children are more likely to live away from elderly parents, distance will create barriers to informal care. • Demographic change is likely to mean that people expected to care will themselves be increasingly old and frail. • Disabled and older people may expect greater choice and control over their support. (Glendinning and Arksey, 2008, p 224) Increasing the retirement age is another policy plan that is likely to reduce the supply of unpaid caring. For policymakers, there are now competing priorities between care-giving and employment. We are now beginning to hear carers described by policymakers as ‘socially excluded’, because of their relatively low levels of paid employment. This looks likely to result in increasing pressure on them to join the labour market, as well as to extend their stay in it. However, while relying on service users’ loved ones to support them may for the moment seem a viable policy to cash-strapped governments, the problems it creates for both service users and their families emerged powerfully from the people we spoke to. It is also a policy that sits uncomfortably with the goals, values and practice of person-centred support. Many of the service users who took part in our project, particularly those not living in residential services, received key support from family members. We heard of great love, loyalty and commitment to the wellbeing of loved ones from many service users and relatives. However, people’s role as ‘informal carers’ frequently emerged as a barrier to person-centred support. For many service users, these arrangements could have negative as well as positive consequences. They could be both a help and a problem. The complex interplay of feeling and emotions at work, made this a difficult subject to talk about. However, 129

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service users, practitioners and families did discuss it. They identified three major issues that service users could encounter that related to their families. These were: • restrictions on service users’ say • barriers to independence • the parallel problems for families We now look at these in more detail.

Restrictions on service users’ say Many service users and practitioners identified the negative influence of families on decision-making for service users. They referred to decisions in service user’s lives being made by, or being strongly influenced by, their relatives. For example: I can’t get at my money at the moment because my mum’s not letting me have any. When we go away or got out tonight I can’t say until I’m sure about how much money I’ve got…. She’s transferred so much of my money to an ISA [Individual Savings Account] that I can’t get at [it], because she won’t let me have the password. And I think that’s taking my human rights away – of my managing my own money. Service user Sometimes you ask the client what they want to do and their mother answers. Practitioner I think that people with learning disabilities – often in my experience family and carers … limit people’s choices…. I have to be very tactful about all of this! So I think … it’s about people trying to work better with family and carers and build trust and build bridges. Manager You go to visit someone and their daughter or their son is there and there is the ‘inheritor’s protection scheme’. It does kick in some times. They might say, ‘Well he doesn’t really need that.’ Not known Yes and her daughter is a bit of a – she is a staff nurse, and the manager always says the customer is king, but the resident is the customer, not the relatives. Practitioner 130

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Families are not used to ideas about inclusion and want to keep services like day centres. They see changes as a loss of services. The mindset and attitude is a crucial one. Manager

This could be happening in the context of pressure on service users restricting their say from other quarters too: Most times in [social] care, you are between a rock and hard place, because you have got to do what the resident wishes. But you have got relatives as well and you have got the social workers and everybody wanting to get their input into care and everything else. Practitioner

Some service users found it easier than others to make their own decisions in the face of pressure or suggestions from their family. Sometimes I don’t want to go the way they are going and do the things that they want to do. They suggest something and I decide if I want to do it or not. I say I don’t feel like doing it. Service user Your parents are a massive thing, but they need – especially when you go into a residential home – they need to know that, yeah, they can care for you, and yeah, they can do what they like for you, but they need to know that you want your space. Service user

The value of advocacy and support In many situations, advocacy proved a valuable tool in addressing these pressures and assisting service users to make their own decisions. Sometimes, for people with learning difficulties, this support came from volunteer citizen advocates, but more often, in the services we worked with, it came from practitioners – through key worker arrangements – and from managers. Quite often families will intervene on behalf of a person and say, ‘What they really want is’ and be quite prescriptive in what they really want and, it is about, I guess, giving [the service user] the courage really to just, you know, to have a bit of space and think about what they would really like for themselves and to have [workers] to actually just voice that and them being able to advocate. I think [it is] about making sure that you are advocating

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clearly what that person’s wishes are rather than anyone else’s opinion. Not known

A manager of a service supporting young disabled adults (Pippin Close), told us that the service often became involved in disputes between parents and residents. One of these almost ended up in court. Many related to parents ‘holding on to the purse strings’. The service always tried to get the parents and the young person together to have a discussion and work towards a solution. The service offered to set up advocacy support for the young person involved. All this can create tensions between practitioners and families. It can be quite frightening when you have two very strong parents almost gunning for you. Manager

The same manager explained how she had become involved in a dispute between a young disabled woman and her mother. The young woman had long-term health problems and regularly had to have medical consultations. Her mother always attended the appointments with her. The young woman told practitioners at the home that she did not want her mother to come to the appointments any longer. She said she would prefer her key worker to accompany her. Her mother was very angry and upset about this and felt that she was the only person with an overview and long-term knowledge of her daughter’s health. She thought it was unsafe for her daughter to attend without her, as doctors did not understand the full range of her health difficulties. Both the key worker and manager discussed this with her and eventually the manager decided to invite both parents, who were divorced – and the young woman – to a meeting to discuss the matter. After everyone had given their views at the meeting the father persuaded his ex-wife that she should accept their daughter’s wishes, as at the age of 22 she should be allowed to make her own decisions. This was a decision made collectively and ultimately accepted by everyone involved. Two more detailed case studies highlight the complexity of relationships between service users, families and services and the issues that these can raise for service users’ say and control. Clearly these need to be addressed carefully and sensitively. At the same time they raise broader issues and are themselves sometimes related to broader concerns. Because of this, they may not always be readily amenable to simple solution. Case study 132

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Advocacy where cultures may conflict A manager in Downhampton spoke about the complicated issues involved in advocating for service users. His service was trying to build relationships between the local council and families belonging to minority ethnic communities. He raised concerns about jeopardising these relationships, as it could result in the family withdrawing their disabled child from the service. That in turn could mean that the disabled person remained isolated and excluded. People love their parents often and don’t want to upset their parents and so won’t go against their wishes. So it’s OK the professionals saying, ‘Well you’re an adult, you can make your own decision and you can go if you want to.’ People don’t…. They love their parents. They don’t want to go against what their parents say. So the steps I’ve made, in the past, I’ve advocated too strongly for someone and caused a rift between her and her dad…. I went about it the wrong way, I acknowledged that and I think it’s really important that people remember that. (Manager) The influence of parents extends across all communities. It was a particular issue for the service in Downhampton. There, the ethnicity sub-group of the local learning disability partnership board had identified the conflict between what a service user and what family carers might want, as a key barrier to person-centred support. They recognised that this was not a conflict particular to any one ethnic community. However, some members of the group said that the cultural background shared by many service users made the tension more noticeable and acute in their community than in others. This seemed to be due to different cultural views relating to the role of the family and the individual, where there was a stronger emphasis on interdependence rather than individualism. It’s still very much about the family not the person [the individual service user]. I think there are cultural issues in that. It’s more strongly embedded than the individual. They always consider the impact on the family. Practitioner A manager explained that the major factor in encouraging the take-up of services in black and minority ethnic communities had proved to be winning the trust of disabled people’s families. He likened this to bringing a wall down:

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Supporting people Taking a brick down at a time. Manager He gave examples of the cultural differences in the communities he worked with that could have an impact on the self-advocacy and carers groups he had been instrumental in setting up: • parents may take decisions even if the person is grown up and does not have a learning difficulty; • parents are frightened of the risks faced by their adult sons and daughters, for example, the possible danger of hate crime if they travel on public transport, directed at them due to their impairment or ethnicity or both; • the importance for many people of maintaining their cultural values because they feel that they and their culture are under threat.

The local ‘ethnicity sub-group’ spoke about an example that illustrated these barriers at one of their meetings. It followed on from a two-day workshop arranged by the Standards We Expect project, which encouraged service users to think about decision-making and their rights. A young woman who was a member of the self-advocacy group attended the workshop. After this her family was very concerned about some of the things she said. She stopped attending the group, and practitioners were convinced this was because the family were unhappy with the views she expressed after the workshop. One manager said: That is what happens when people start having a voice and it enables you to take the next step. Others, however, were concerned that if people were withdrawn from the self-advocacy group they could become isolated. Another manager commented: I’m not saying we don’t continue on the journey, it’s just that we need to be more mindful of that. We need to build in contingencies to avoid those situations where people are barred from the group process. A practitioner pointed out how the competing influences that people with learning difficulties were then exposed to, could be confusing and contradictory. But then it’s like saying in a group you can develop your confidence and say what you want, but when you go home you’ve got to be quiet and 134

Social care and carers can’t say nothing. We’re teaching them two different things, which we can’t do. We are saying be independent, make your choices, say what you want to do, go ahead and do it. But if they go home and the parents say to you ‘No, you can’t go anymore,’ it stops there. Practitioner

CASE STUDY ENDS

Case study Barriers to speaking up In services for older people, pressure can come from a different direction; service users’ sons and daughters. We spoke to many residents in residential and nursing homes who were happy for their relatives either to carry out their wishes, or to take decisions on their behalf. For example: I have told my family what I want, where their mother’s ashes are buried and I want to be right at the side of her and I will be with her then and I will be happy. Service user I have got a family and they will decide what happens to me when the time comes…. Oh yes, you have got to talk to them before about it and they are quite in agreement…. I have got one son and two daughters. They can argue when I have gone, that is what I say. They can do their arguing when I am gone and not when I am here. Service user Many of the families we were in contact with did not discuss death and dying openly. This may help explain why some of the older people were happy to leave decisions to their sons and daughters. It avoided the need to talk about them. We also came across examples, however, where families were taking decisions on behalf of residents without asking their opinions or permission. The completion of paperwork about preferences for medical treatment for older people moving into residential and nursing homes raised issues about the consent of service users. While relatives tended to be routinely involved in decision-making, this did not necessarily include service users. When they move into the nursing home, when they are admitted, the relatives have to fill in certain forms. And one is, if they are here, or if [they] have to go into hospital and they are not really going to pull through, do [they] want to be resuscitated? And that is the form that 135

Supporting people relatives have to fill in. The sisters, the RGNs [Registered General Nurses], have more input with that, but sometimes, I get to know families very well as I am on reception, I am on first name terms with most of them and they might come and say, ‘Oh my dad is not very well and I have told the sister I don’t want them to be resuscitated.’ So it is something that is discussed when they first move in, along with everything else, like what kind of diet do they like, are they Church of England, are they Roman Catholic, do they like going to a church service. That is one area that is covered because we need to know the wishes of the family. Administrator We heard about very recent practices that suggested collusion between services and relatives, making decisions on behalf of residents, without their knowledge. For example, in one service, references were made to service users’ post routinely being given to their relatives to open until recently. When I took over [name of home] which was only three-and-a-half years ago … they were still giving all the post to the relatives – only that short time ago. Manager Other examples mentioned, related to major treatment decisions. Unfortunately what sometimes happens is – particularly if people have had a stroke or they are demented – their families take over and they put their wishes first. I think that is still an old-fashioned thing in nursing homes, where the resident wasn’t asked, but the families were asked – and the families’ wishes were paramount. I think that is changing, but I think it is taking some time. Manager We have a lady who told her family that she didn’t want her life extended if anything happened to her. She had a massive stroke. They agreed for her to have a PEG [percutaneous endoscopic gastrostomy] tube in, which is the feeding tube to keep her alive. And she is still alive two-and-a-half years later – no quality of life; can talk but flatly refuses to talk and won’t talk to the family either. And the grief and guilt they have got is huge, but this woman has no quality of life. She made her wishes clear and they were allowed to override those. Manager In another home a relative described a similar situation where decisions about a service user’s future medical treatment were being taken by family

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Social care and carers members, not the service user. In this case the family had decided that treatment should be withheld. I don’t know whether they [nursing home staff] have discussed it with her but we ourselves have signed a form, a ‘no resuscitation’ [form]. Because she had this stroke which severely cut her quality of life, she is not mobile, she has lost the use of the bottom half of her body, and we know that if she had another stroke, there wouldn’t be much quality of life at all. Me and my sisters have spoken about it. We have not discussed it with my father, he is 87…. We decided we didn’t want resuscitation. But I don’t think it has been discussed with her [the resident, her mother] because I don’t think she would understand…. We haven’t spoken to her because death to my mother is a bit of a no, no. She doesn’t want to know about it. Although she sits and reads the deaths in the paper, like most elderly [people] do. But she doesn’t want to talk about it. Relative However, we did hear a range of experiences and some relatives felt their response depended on their relationship with the older person moving into residential care. It is different for spouses and for children. They have different relationships with relative, home and staff. For a loving spouse [the] move to [a] care home can be a continuation of a loving, caring relationship that has already been through the first stages of the illness and takes all this into the care home. This is all part of a continuum. For children, their parent coming into a care home can be their first acknowledgement of their parent’s illness, their failing. Children also have their own families. Every case is different. [There] cannot be one way of doing things. [You] can only say, ‘This might be considered the best way forward.’ Relative Such situations are clearly difficult and complex. The issue may not only be of whether people have capacity to decide, but also whether they always want to. What this highlights – and it cannot be regarded as an isolated example – is the importance of having in place an agreed ethical procedure in line with the values of person-centred support. It is not difficult to see what problems may be caused otherwise.

case study ends

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Barriers to independence A second problem which service users and practitioners identified was parents and other family members who did not support service users’ desire to live more independently. This reinforces findings from other research. In general, professional carers [paid workers] believed strongly that adults could learn recursively [through breaking a problem up into simpler parts and trying to solve it bit by bit], while family carers in our sample, including those who were prepared to give the adult freedom of the locality, considered that their relatives had reached the limits of their potential capabilities. (Heyman et al, 1998, p 206) Service users talked about the way that parents’ fears for their children’s well-being and their desire to protect them and avoid risk, could get in the way of them becoming more independent. They said: And this is another problem, I want to go to independent flats that are just over the road from us, but my mum doesn’t think I would cope in them, so I’m having a really big fight to try and get there at the moment, because that’s what I want and not what she wants. Because Pippin Close is trying to maintain our independence, but where she wants me to go when I finish at Pippin Close – next door – they’re going to take all that independence away. Service user I would like to have my own space. [His parents said no] They were worried about me. They think I might hurt myself. They said they wouldn’t want to see me again [if I move out]. Service user It took a long time. I had to wait until after they [my parents] died to get married. Service user Because I am new here, my mum at the moment doesn’t think I can do some of the things I am doing and she doesn’t like the fact that I am trying. It makes it very difficult. Service user

Practitioners gave examples of how parents and other relatives had influenced service users and discouraged them from living more independently.

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The service user sometimes feels very vulnerable, you know, and we have to try and support what the service user wants where families are coming in quite heavy and saying, ‘You’re ok, you don’t need to move out into the community. You’re fine here in a large group home.’ Practitioner And then there’s the families. I took someone to look around and she was all for it. Her mum and sister came on the scene and now she doesn’t want to know. ‘No it’s not for me.’ That’s because mum and sister have said ‘Stay here.’ Practitioner Sometimes it’s hard to implement what people want to do because they are very much under the wings of their parents and support workers. Sometimes the parents are a wee bit nervous to let them go and grow and develop. Practitioner

When a service user has not been used to making their own decisions and choices, because their parents had done it for them, services sometimes had to offer additional support to increase their confidence. This could take a lot of time and effort. The idea of having what you want and working towards it, can be a bit frightening. Practitioner When people aren’t getting choices at home, they walk about expecting people to make decisions for them. Many users don’t know what they want at the start, but as their confidence grows, they get more ideas. Practitioner

We were told that many relatives were worried about the risks service users might face if they moved out of a residential service, or had to make more decisions for themselves. [Parents] don’t want their youngsters to move on from there [the day centre], because they’re in a very safe environment. Practitioner [Family members say] ‘She can’t make decisions,’ but she can, and she can make wrong ones. Of course, there is an envelope of security but you can’t force people to eat healthily, you can only persuade and encourage. Manager

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Some people working in services felt that part of the problem was that some parents did not view their adult-age children as grown-ups able to make their own choices and decisions. I don’t think they can quite grasp that the young people are adults now. They have been responsible for them for so long. For example, one lady has just moved in and we have been assessing her for going out in her electric chair and her family are quite adamant [that] she could not do it, but she is great in that chair. She wanted to do it and we gave her the opportunity. Our role is to promote their independence and parents can find that hard. Practitioner We have [encouraged over-protectiveness] because we haven’t challenged it. By our actions, we have gone along with that…. It’s about trying to make [parents] understand that no one has that responsibility. Or that we all have a bit, [but the service user is] an adult, not a defenceless child. But there is no black and white. Manager

The parallel problems for families Our project made clear how great the pressures on parents and other family members could be as ‘carers’. ‘Informal carers’ often have the main responsibility for providing support for disabled people and other service users. Often carers in our project felt that their role and responsibilities were not recognised or valued. Given that governments have largely seen them as a resource to be used, rather than as signifying the need for more and better support for service users, this is hardly surprising. Despite the emphasis on ‘informal care’ and ‘carers’ over the last 30 and more years, most people taking on these tasks still lack the information, advice, support and advocacy to be best able to advance the rights and needs of service users. The parallel difficulties they themselves face hardly make it easy for them to support service users’ autonomy, especially as this may be at odds with their own. As Bob Heyman and his colleagues observed in their study of people with learning difficulties: Professionals ask a great deal of family carers when they seek to persuade them to modify patterns of behaviour which have protected close relatives from the terrors of the modern world. (Heyman et al, 1998, p 214)

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Simplistic responses to this issue which simply blame ‘the carers’ are unlikely to be helpful or advance ‘person-centred support’.

The effect of broader barriers The response of families to service users’ needs and situation also needs to be put in broader context. It needs, for example, to be put in context with the longstanding shortcomings of support services. One manager said that many parents misunderstood the ways his service worked. It did not tell its users what to think or do, as relatives sometimes thought. However, he conceded that the service itself had contributed to this problem in the past because of the paternalistic way in which it was run. Some [parents] feel we are fostering people, but we are not. We are providing a service. It is particularly difficult to get across when that is the way [the homes] have been run. Manager

Travel In some services, we were told that relatives were particularly concerned about service users travelling independently on public transport. A manager from a rural service, for instance, said parents were worried about service users travelling long distances. One service user, for example, began using buses when he got a job, instead of taking taxis, as he had previously done. His parents were contacted by a worried friend who had seen him on the bus. Becoming anxious, they stopped him travelling by bus. The service involved, however, had assessed the risk as low and were supporting the individual to use the bus as this was his express wish. A practitioner from another area told of a worrying incident experienced on the way to a conference which we had organised. While it actually strengthened his commitment to independent travel for the service users he worked with, it does highlight the disabling barriers still associated with public transport. I mentioned earlier that I was late here and that was because of the tube system here [in London]. I got on the tube, the door shut behind me and [the two service users] were still on the station. So I was frantically calling transport police and we were looking at the camera trying to spot them – and they made their [own] way here. I was thinking how on earth could they make their way here? I couldn’t believe it. But now I know we could definitely do 141

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independent travel because, I know he won’t mind me saying these things, but his dad is dead set against it and he lives maybe three miles from where we are based. Practitioner

Parents’ concerns about the future Some family members who we spoke to during the project expressed concerns about the future of their disabled children. They worried about what would become of their children when they died, or were no longer able to look after them. It is not clear whether these concerns were solely about the safety and security of their children or included ideas and hopes of them living more independently in the future. For example: I have seven children and I worry what is going to happen to my disabled child. Carer/relative

They talked of their hopes for ‘responsible’ services that would support their children when they were no longer there for them. We should remember that these were views of parents who were sometimes criticised by services for being a barrier to change and not supporting their children to develop independent living skills. This contradiction – that such services might sometimes themselves inhibit the independence of people with learning difficulties, reflects the complexity of these issues and also perhaps the lack of support and preparation families are given to help their children become more independent when they are on their own.

Overcoming the barriers We have already seen how services and practitioners could overcome some of the problems created by the competing concerns of service users and their families. This included offering service users advocacy and support, as well as providing safe opportunities for negotiation with relatives and treating family members with sensitivity and ensuring they had the information and support they needed. All these could help overcome barriers that might develop in the way of personcentred support and independent living between service users and their families. Practitioners and managers also highlighted two other approaches which helped resolve difficulties – enabling families to meet and learn from other families, where service users have moved on to independent living, and involving families to understand and support 142

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independent living. Both are essentially about offering information and involvement – two key elements here, as we have already seen.

Meeting other families One practitioner, for example, talked about the way that the families of residents living in their residential home, could benefit from talking with the families of service users who had already been through the process of moving to more independent living. Families who lacked experience of disabled people living successfully in their own flats or houses would learn from this. Our families need to speak to other families that have gone through this so the empathy is there. ‘Three years ago this was me saying this. Now my son or daughter [has moved on] and I’m quite happy.’ Practitioner

Involving families in change Several participants spoke about involving families directly in personcentred planning or in dialogue about changes to the service as a route to reassuring them and overcoming barriers. They saw such involvement as promoting an understanding both of what the service user wanted and the support that would be available to help make things work. With this knowledge, the relatives had been reassured and had then engaged more in the process, often in constructive and helpful ways. There was a lot of resistance at first, but I think slowly an acceptance of it. Because of the process, the person-centred reviews and the fact that they know the Trust is serious. Manager Families were so much involved [in the reviews] and they welcomed that – being able to have their input and being listened to. Everything was opened up to discussion. There were no hidden agendas. It was about their views, their future, their need…. People get very worried. They hear a lot of horror stories of people living out in the community without the correct support and everything going wrong. When we identify what that person needs to make it work, they get a different picture altogether…. I think they saw it black and white and didn’t look at the full picture of what it could be. Practitioner 143

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The person-centred reviews have brought parents back into the fold in most cases…. Parents have quite a good feeling about what is happening. Manager A lot of families are like, ‘Over my dead body.’ It’s their choice at the end of the day, you know. But creating a person-centred view is an ideal platform for families to listen to [service users], because people are giving from their perspective, so you’ve got [the] professional perspective, you’ve got key worker perspective, you’ve got the day centre’s, a lot of people’s perspectives there and you can facilitate these views. You know, you’ve got really frosty families to start with and all of a sudden, half way through the review, they are sat there thinking ‘Oh I didn’t know that,’ and they’ve learned so much about [the person] and their views, because that person’s been empowered, supported by everyone to say what they want. Practitioner

The report into the work in Camchester around end of life care came up with a number of recommendations to make end of life care more person-centred. One focused specifically on the need for more discussion about death and dying (Fleming et al, 2011, p 4). There should be a more general openness about the subject of death for all people. Efforts should be made to promote an earlier consideration of end of life choices among the general public.

Where there isn’t family support We have heard about some of the barriers in the way of personcentred support that can be created by service users’ family members. Service users and practitioners also highlighted a different set of problems that could also arise where service users did not have family members involved in their lives. It is important to remember family can also be one of the greatest supporters and advocates of people’s independence and that having family members to turn to could offer many and real benefits to people as service users. We heard a lot about what a family could offer people as service users. One of the important roles family members played in the lives of many service users was providing advocacy or support. Thus people’s relations can be a source of advocacy, as well sometimes as creating the need for it. Some practitioners and managers talked about the problems faced by service users who may have difficulties getting their voices heard, but have no family or friends available to provide support or advocacy. 144

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Their eligibility criteria for the people who can get services and those who can’t – the rules are changing, so people who need the most support who don’t have much of a voice because their families aren’t connected with the service, they will not be able to get the help, and I worry about those people because if their families or their carers are not fighting the system, then [those service users] are going to lose out. Because the way services work, like any organisation, it’s about money and if they haven’t got money, they want to push people out the door, they don’t want new people coming in. I’m worried about those people and I’m in a difficult position, because I work for social services, but I care about those people and I’m an advocate. Not known

While there is now widespread recognition of the crucial importance of skilled, independent advocacy to support service users, it continues to be in short supply. I use the word advocacy, when people for whatever reason don’t know how to get assistance, how to deal with it. There needs to be supported services and advocacy for disabled people. It’s an absolute crucial thing, and there’s money available it’s true, and advocacy is something that needs to be homed in on, as far as improvement of services [is concerned]. Not known

We heard that in many areas the availability of citizen advocacy was limited. Research suggests that this picture is fairly typical of the provision of advocacy in the UK more generally. Advocacy exists, in principle, for all user groups. However, it is far from universal in practice and is simply not there for everyone who needs it. Who has access to advocacy, is often decided by a combination of historical, geographical and financial factors. (Atkinson, 1999, p 19) [Access to advocacy] remains difficult for people living alone in their own homes with restricted mobility, and even more so for people living in residential homes. (Atkinson, 1999, p 21) According to this research and it reflects earlier findings, people from black and minority ethnic communities and people with dementia, are likely to have particular difficulty accessing advocacy. Many of the services involved in our project found it difficult to devote sufficient staff 145

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time to supporting service users in this way. There are also potential conflicts of interest for practitioners to act as advocates for service users, particularly if the service user is in dispute with the service the practitioner is employed by. We are not suggesting that family members are always the best advocates for service users. But where they aren’t available and no formal alternative is on offer, service users are doubly disadvantaged.

The problem with ‘informal care’ For more than 30 years, successive governments and policymakers have reframed disabled people’s and other service users’ families and friends as their ‘carers’. The increasing expectation is that as ‘carers’ they should have a major role and responsibility in ‘looking after’ older and disabled people. This has been despite the damaging effects this can have for both groups, as their rights, needs and choices are restricted and left unmet. It also takes no account of the kinds of divisions between services, families and service users that participants in our project highlighted. Jenny Morris, has said that, for many disabled people, the term ‘care’ assumes dependence and has meant others taking charge of and controlling service users, restricting their autonomy. She challenges the way the competing meanings of ‘care’ are blurred and misrepresented. It does not mean to ‘care about’ someone, in the sense of loving them. Rather it means to ‘care for’ someone, in the sense of taking responsibility, taking charge of them…. We need to reclaim the words ‘care’ and ‘caring’ to mean ‘love’ to mean ‘caring about’ someone rather than ‘caring for’, with its custodial overtones. (Morris, 1993, pp 150, 174) It is not the ideas and values of mutuality, commitment and affection that such disabled people and service users reject in ‘care’, but what in practice has been the inherent inequality underpinning it. They are also critical of the way in which historically the views of those looking after them, rather than their own views have been prioritised. It has often been suggested that disabled people and service user movements have been polarised against informal carers. They argue instead that it is the social construction of informal carers of which they are critical, because of the way in which it reframes relationships between parent and child, partners and siblings in unequal terms of carer/cared for. Reliance on family members for support 146

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often limits the autonomy of both the service user and the carer. It may diminish personal relationships, rather than be a positive expression of them. Writers like Jenny Morris also make clear the reciprocity that exists within relationships between disabled people and family members and highlight how many disabled people also have caring responsibilities, both as parents and with other adults. They highlight the way in which the care system can both reinforce the over-protectiveness of family members and create barriers in the way of them advocating for the independence of service users. This has been highlighted in this chapter. The reality is that governments have increasingly emphasised the role of informal carers in social care as a means of holding down costs and expenditure and limiting state responsibility. The message from our findings is that this is unlikely to be consistent with moving to more person-centred practice and philosophy. It is also becoming increasingly untenable, as the demand for support is estimated to increase and the supply of both paid and unpaid ‘carers’, looks set to diminish.

Summary Government social care policy has placed increasing reliance on the support provided by family and friends as ‘informal carers’. This emerges as another major barrier restricting independent living and person-centred support. Serious problems are highlighted of families speaking for service users, restricting their say, limiting their involvement in decision-making and limiting opportunities for them to live more independently. The issues that emerge are difficult and complex, for example, when culturally different roles and expectations are involved and when service users’ views are subordinated in the making of important health and medical decisions, as is apparent from two case studies. Parents and other family members often do not receive adequate information or support to facilitate service users’ independence, yet may have the lead responsibility to support them. As a result they may be risk averse, as well as being fearful for the future. Key ways of overcoming these barriers include offering service users advocacy and support, as well as providing safe opportunities for negotiation with relatives and treating family members with sensitivity and ensuring they have the information and support they need. This is likely to encourage person-centred support and independent living. Practitioners and managers also highlighted two other approaches which helped overcome difficulties – both essentially about offering 147

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information and involvement. These were enabling families to meet and learn from other families, where service users have moved on to independent living and involving families in services to understand and support independent living. Where service users do not have families or friends to help, there can be other barriers to person-centred support for want of adequate good quality advocacy services, which are still in short supply. Reliance on support from families as informal carers, for want of adequate formal services and support, undermines relationships and obstructs person-centred support and independent living. While governments have seen unpaid carers as a resource to keep down the costs of social care, this is unlikely to be a sustainable policy in the longer term as supply is not expected to match growing demand. It is also clearly inconsistent with extending person-centred support. References Atkinson, D. (1999) Advocacy: A review, Brighton: Pavilion Publishing. Buckner, L. and Yeandle, S. (2007) Valuing carers: Calculating the value of unpaid care, London: Carers UK. DH (Department of Health) (2008) Carers at the heart of twenty-first century family and community: A caring system on your side, a life of your own (The Carers’ Strategy), London: DH. DRC (Disability Rights Commission) (2007) Changing Britain for good: Putting disability at the heart of public policy, London: DRC. Fleming, J., Glynn, M., Griffin, R., Beresford, P., Bewley, C., Branfield, F., Croft, S. and Postle, K. (2011) Person-centred support: Choices for end of life care, London: Shaping Our Lives. Glendinning, C. and Arksey, H. (2008) ‘Informal care’, in P. Alcock, M. May and K. Rowlingson (eds) The student’s companion to social policy (3rd edn), Oxford: Blackwell, pp 219-25. Hampshire County Council (2008) Getting personal: A fair deal for better care and support.The report of Hampshire County Council’s Commission of Inquiry into personalisation and the future of adult social care, Winchester: Hampshire County Council. Heyman, B., Huckle, S. and Handyside, E. (1998) ‘Freedom of the locality for people with learning difficulties’, in B. Heyman (ed) Risk, health and health care, London: Arnold, pp 199-214. Morris, J. (1993) Independent lives: Community care and disabled people, Basingstoke: Macmillan.

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Twigg, J. (1989) ‘Models of carers: how do social care agencies conceptualise their relationship with informal carers?’, Journal of Social Policy, vol 18, no 1, pp 53-66.

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Institutionalisation There are stories of our elders who are vegetarians being provided with meat dishes from the meals on wheels service … of an Asian elder, a Hindu living in a residential home, being given beef. There is a lack of respect, inadequate provision for dietary needs, skin and hair care, language and emotional needs…. The list is endless. … ranging from specific matters such as ‘teeth keep getting lost’ and ‘her hearing aid never works’ to a general comment that care was not good enough. (Harding and Beresford, 1996, p 28) Standard Six: Combating institutionalisation

Services should support, rather than restrict the human and civil rights of service users. They need to be consistent with human rights and anti-discrimination legislation as well as the Mental Capacity Act. They need to promote service users’ choice and control and resist pressures to institutionalisation, particularly associated with residential and segregated services.

Introduction In the last chapter, where we focused on ‘informal care’, a tension emerged between people making their own decisions and living independently, on the one hand and, having decisions made for them and being dependent on their families, on the other. This discussion is developed further here, where we look at problems of institutionalisation – the antithesis of independent living and person-centred support – and what works to overcome the barriers associated with it. Institutionalisation was first associated with the large ‘total’ institutions, like work houses and ‘lunatic asylums’ established in the 19th century (Goffman, 1968). People are socialised into the rules, requirements, routines, restrictions and values of such institutionalised living. It not only limits their lives, but also creates long term damage 151

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that makes it difficult for them to live differently. Features associated with institutionalisation include: • • • • • •

people’s rigid categorisation being segregated being lumped together the provision of merely physical maintenance group living standardised routines

Colin Barnes has described the effects of institutionalisation on disabled people in these terms: In many cases they are confined to a residential institution and kept from making the most basic of decisions and deprived of the opportunities which able-bodied people take for granted (Brisenden 1985). Disabled people in such places suffer loss of social skills and self-confidence…. The organisation of these services risks their being sucked into a culture of dependence. (Barnes, 1991, p 129) The move to community care starting in the 1950s and culminating in the 1990 National Health Service and Community Care Act, can be seen as a key response to institutionalisation. However, Enoch Powell, in the early 1960s, as Minister of Health, highlighted its durability in his famous ‘water towers’ speech, which was intended to herald the end of the big institutions: There they stand, isolated, majestic, imperious, brooded over by the gigantic water-tower and chimney combined, rising unmistakable and daunting out of the countryside – the asylums which our forefathers built with such immense solidity to express the notions of their day. Do not for a moment underestimate their powers of resistance to our assault. Let me describe some of the defences which we have to storm. (Powell, 1961) By then it was already apparent that institutionalisation was not an issue confined to the large old Victorian establishments. It has long been recognised as a major problem in relation to long-term use of health and social care services more generally. Early discussions focused on the damaging effects of life in large institutions. More recently there has been increasing awareness that such problems can extend to many 152

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more kinds of group settings, small as well as large, including day services. It can even include living in your own home, when this is restructured and institutionalised by services limiting how people can live, for example, when they can get up and go to bed, get dressed, eat, go to the lavatory and even whether they can go out. In this chapter, we focus on the institutionalising problems people face who live in residential services, or who use social care services for long periods of time. In these contexts particularly, we see how institutionalisation is still a major problem for service users in contemporary social care services. It emerges as another major barrier standing in the way of person-centred support. In 2007, there were 18,577 registered care homes for adults of all ages, with 441,958 places (CSCI, 2008, p 10). The equivalent figures for 2008 were 18,541 care homes run by private and voluntary organisations and the council providing 450,000 places for adults of all ages (CSCI, 2009, p vi). This is still much more than the number of service users accessing direct payments or individual budgets. Many disabled and older people live for extensive periods in residential services. Some may spend their whole life in them. A significant number of the service users we spoke with, lived in residential services. Person-centred support poses significant challenges for residential services. These include keeping a high ratio of staff to service users and maintaining one-toone support. Person-centred support represents a cultural challenge to the values and operating conditions of many residential services. As Hazel Kemshall has stated: Residential care creates and maintains enforced dependency, with the process of institutionalisation fostering passivity and de-individualising residents. (Kemshall, 2002, p 75) The issue of whether residential services can ever be truly compatible with person-centred support, continues to be heavily disputed. While there are examples of high quality residential and related provision which do offer choice and control, they tend to be exceptional, expensive and outside the financial range supported by the state or affordable for most service users. The tendency of long-term residential care, for example, for older people, tends to be disempowering and institutionalising (Bowers et al, 2009). Institutionalisation is still a factor in the welfare of large numbers of people in the UK today. It can have a number of different negative effects on their lives. These effects were identifiable in a number of the services we worked with. A middle-aged man using a service for 153

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people with learning difficulties, told us how he and fellow residents were treated at meal times at their home. We are not allowed to talk to people on the other table. We wait for staff to finish their tea. When staff get up, they say what people are on the rota to do. You can’t get up until the staff say so. Service user

A group of service users living in residential homes talked about the qualities they associated with good staff. They offered a commentary on their negative experiences, as well as highlighting how they would like services to operate, to enable them to live with freedom and choice. Good staff let you go out and about, as long as they know where you are and that you are safe. Good staff support you to do what you want, as long as you are safe. Good staff support you to cook your tea.

Collective disempowerment Group living seemed to create its own problems for service users. Being part of a large group, in practice often resulted in a lack of individual choice or opportunity. In some cases, staff seemed to contribute to these problems, instead of being able to transcend them. Well they are looking after us. We are in their care, so I don’t know that we have to make decisions, because they make them all, don’t they, for our benefit? Service user We try to make it not institutionalised, but we still have to have certain rules like meal times. Practitioner There is also the question of identity as well. People lose identities within institutions and I think unless you have a clear idea of your own identity and who you are as a person, that is very difficult. Not known

Many people we spoke to, who lived in residential homes, expressed strong feelings of disempowerment. 154

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People might be more powerful than you. Instead of you having the power, they [the service workers] take the power away and you’re thinking ‘I can’t do this.’ Service user When you are in a nursing home, you are not allowed to take any control over anything you do. I feel as though I have got my life back coming here [in supported accommodation for older people]. People speak and they’re heard and you hold conversations. That’s the biggest contrast. Service user

Even the layout and equipment of homes sometimes contributed to people’s institutionalisation. One unit opened an extended and refurbished kitchen. It had previously been too small and was inaccessible according to service users. The new kitchen had height adjustable work surfaces. Service users were very happy with it. One resident told us that she had spent the first day washing up, because the design of all previous kitchens she had used had prevented her from ever washing up before. Another said: At last they are thinking about new equipment for people to use that is accessible to them, special knives and stuff. Service user

Barriers to change The limitations of domiciliary care could push people into institutions. A social worker described the problems she faced finding domiciliary providers for new service users, particularly if they needed two care assistants each visit. The care agency says,‘We can’t do this, can’t do that,’ which restricts the person from living in their house, which has caused quite a lot of tension. So clients have to go to a residential home temporarily, or possibly long term, because we can’t get the care for them in the community…. In an ideal situation, you’d want people to be able to have choice about when they get up, when they go to bed and things like that, but the reality is that we’re saying, ‘The only time we can get you up is 11 o’clock.’ Practitioner

Participants pointed to broader reasons for the inadequacy of domiciliary services.

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That is it. It is a logistic[al issue] isn’t it and there is only a finite number of people available. Not known … Probably because there are not always the resources to actually go in to someone at night at 11 o’clock. Not known

However, it was when people came to moving on from residential services that issues of institutionalisation, dependency and disempowerment became most apparent. Participants in our project emphasised how difficult it could be for service users to make the move from residential care to independent living. This followed from both an inheritance of institutionalising practices in provision and its enduring effects on people as service users. I think it is an institutional problem, [Name of home] has been there for 40 years and was run along very old fashioned lines until about three years ago. So there are a lot of things that need to change, to empower the service users to take part in the running of the service, to realise that they can complain and also tell us how good the service is, mainly, that it is their service and they can take part in the running of it. Manager I work in a service where we have people who have been there for a long, long time. Some have been there for 20 or 30 years. It is very common for a lot of our service users to have been at the service for that length of time. For them to change from being in a position where they were told what their care would be and what would happen, to then having more involvement in it, must be quite difficult for them. We are still in the process of trying to overcome those barriers. Practitioner They have lived together for a long time and been conditioned into this way of living, so it is difficult to for them to visualise another way of living. They get excited about it. They say, ‘I want this,’ but then when you chat, it comes to light that, perhaps, ‘I don’t want to live by myself.’ Practitioner There really is a lack of opportunity for people to spread their wings and become more independent. Practitioner

As one practitioner put it, making choices requires self-confidence which some service users have not had the chance to develop. Now 156

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there is pressure for a different more participatory way of working, but many service users are not equipped to respond to it. The disempowerment of the service user can then appear to be the problem, but it is the service system which has created and perpetuated it. Often it is the person themselves who we are working with, whose life experience has changed to a degree that they have reduced their world to a size where they maybe don’t have the confidence to take a risk. To step out of the comfort box, to step out of the world which they have decided is a size they can deal with and they can function in it comfortably. It is often their home or a room they live in and while they are in there, they can do it. Practitioner They have the chances and choices, but they choose not to. It’s self confidence. You offer them courses. There are chances to find out. It’s whether they want to find out. Practitioner

One service user described how difficult he found moving from a residential home to his own flat. Thirty years is a long time in a residential home. I’m very happy now. I’ve got my own flat.… At the beginning, it was a bit daunting. I remember the day I moved in. I was all alone. I was used to living with other people. I could move into a new world…. I have freedom to do what I want to do. I used to live in a residential home. Now I have my own bungalow. I get 24-hour care. I don’t have to rely on different carers, or have to wait. I employ people directly. I’m more in charge now. It is my life. Service user

Some practitioners stressed that the length of time people had used a service and their age, were important factors to consider when considering a move to independent living. I wish it was done a bit earlier. Some [service users] are in their 60s and 70s already. Practitioner It’s like trying to teach an old dog new tricks…. Before, we were told, they weren’t allowed to do these things. Practitioner

We heard how daunting and frightening it could be to move out of residential care, or even from one type of supported living to one with less support. Many service users had become accustomed to a certain 157

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level of support and found it hard to imagine how they could manage with less. Great sensitivity is clearly needed to ensure that what is offered is support rather than just pressure for change. They need to experience living on their own. They can’t imagine, have no concept of what it would entail…. It’s fear of the unknown too. There is an awful lot of work to be done with residents and families. No one likes to do something without practising. Practitioner [The service users] have assured tenancies and that is the most precious thing to them. There is a sense of a lot of things being taken away from them, like the cleaner and cooking. They are stuck, are really hanging on to their assured tenancy. It’s challenging to work with people who don’t want to move and I do try to respect that. But when I have worked in a really person-centred way with one lady, who I thought would never leave, she began to believe in her own strength. From a lady who spent almost all day lying on a sofa smoking, we got her motivated to move somewhere with less support and she realised a dream that she never thought would happen. Practitioner

Residential homes and day care services readily foster dependence in service users. By taking over tasks from people and not encouraging independent living, many services either de-skill service users, or do little to prepare them to live more independently. After a period of time, service users may not want, or be able to leave, what one participant described as, the ‘cocoon’ of the institution. You have a lot of people who don’t really want to do things. They are just happy with the way things are. They don’t want to come out of that cocoon, because that is how they were brought up. With people saying ‘no’ to them. They don’t have the confidence to go out and see what is available for them.’ Practitioner I don’t know how to express it, but if I said institutionalised thinking [that would sum it up]. You know, ‘We have always done it this way.…’ Not known They are institutionalised, they have that day service mindset…. For some people they stay with the same service. It is frustrating for [new] people you know, who need the service. Practitioner 158

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At one service we worked with, there was no culture of people moving on to live more independently, however young they were. A new manager there said that she had done a work placement at the same home over 20 years earlier. She observed: [There are] only three people different after all that time. [It is] stuck in a time warp. Manager

At another home [for 10 people] run by the same organisation, a service user told us he had lived there since it had first opened. That is about 14 years ago. Everyone who initially moved here, is still here apart from one person. Service user

A disabled man explained how he was ready to make more decisions, but living in a home made it difficult. I would like to arrange things and make appointments, but I can’t seem to do these, and I like arranging things…. I don’t get a chance. Service user

Addressing institutionalisation Overcoming the institutionalising effects of services is both a key task for person-centred support, as well as a pre-condition for its practice. People working at one residential service, for example, spoke about trying to move away from an institutional approach, towards being more person-centred. We are trying to get away from seeing the residents as some homogeneous mass. Manager Rather than doing, we are letting them do. It’s nice to see them doing things for themselves. They are all quite capable, every single one of them. When they were at home, they used to do more. [One woman used to cook and do painting and decorating before she moved to the home.] When she came to [the home], it was taken away from her. Practitioner

Two examples highlight both the possibilities and problems of trying to overcome dependency that has been imposed on people. Workers in one residential service, told us about an idea which worked well. 159

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This was an initiative which paired residents with learning difficulties with others who were living more independently and managing their own tenancies with support. Residents were subsequently involved in individual person-centred reviews to build on this work and establish where they would like to live in the future. This included the type of accommodation and who, if anyone, they might like to live with. I think it has empowered them to speak up. Eighteen months ago, they wouldn’t have been able to say how they feel, or what the future might look like. But now, they have more of an idea and don’t feel intimidated to say. That’s been a really big break through. Practitioner It didn’t sink in. There was a lack of understanding. [Now service users think] ‘I can live like that if I want.’ It gave a taste. It was the flavour, the direction as an organisation, that we needed. Practitioner It’s amazing actually. Now if we go out and there are houses up for sale people say,‘Oh that’s nice. I wonder how many bedrooms it has.’ ... They like to look in catalogues for furniture and other items they might want for their house. Even 18 months ago, they would never have thought of looking at things in that way. It’s quite enlightening. Practitioner At one day centre, however, we heard from practitioners about a change which did not work, but instead upset many service users. Practitioners said that previously a hairdresser had come into the day centre to cut service users’ hair. They said she made a large profit and offered no choice, ‘Doing everyone’s hair the same.’ Practitioner

As part of a scheme to encourage service users to use mainstream services in their communities, the management of the service discouraged the hairdresser from coming to the centre. That went on for about a year. We had management committee meetings – special meetings. We had petitions and protests. It all became a negative, to be fighting against that. People get scared of change…. Practitioner

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Oh, yes, sometimes if felt like a battle. Some people were in a mindset that it’s always been like this, so why has it got to change? And they tend to fight against it no matter how you try to encourage them. It takes time to get people to look at things in a positive way. Practitioner

Managers and practitioners took this step to tackle what they saw as the segregation of disabled people. They attributed service users’ initially negative reaction to their institutionalisation and distrust of change. But given that they imposed the change, another expression of institutionalisation, we might wonder whether it wouldn’t have worked better to begin with, if service users had been more involved.

Overcoming institutionalisation Progress is being made in services to overcome institutionalisation. A number of different ways of achieving this emerged. Service users and workers highlighted the value of learning from other people’s successes. They said that many service users were not aware of what might be possible. For example, by meeting people who had their own tenancies, or received direct payments, they could gain greater confidence to consider what might be possible for them and make informed decisions about their own futures. However, in [another] council, we have seen a day centre, entire buildings closing down, the staff being used in a different way, in a person-centred manner and it has been a fantastic success. It has been a very, very intricate process, where the staff were involved. There was a lot of work that has gone into it and there have been two or three very focused, driven managers involved in this process. Manager If some people did move and it was proved that it worked, that would really get some confidence for other people and families and staff. We have some people who are pretty desperate to move. Practitioner

Training and capacity building Some staff continued to see a lack of challenge from service users as meaning they were satisfied with things as they were. This view was articulated by one manager, who argued that users of a residential 161

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service had not complained of institutionalisation. He understood that the service was not consistent with current thinking about good practice, but insisted that the residents were “happy”. If nothing happened, I don’t think the residents would be any wiser. They would still be happy here in 10 years’ time, I’m sure they would. Manager

Training to overcome the institutionalising effect of services, emerged as key. This included training and capacity building for both service workers and service users. Practitioners from some residential services admitted that they had never received any training on how to support disabled people to move on to live more independently. There’s been loads of training from [outside agencies]. POVA [Protection of Vulnerable Adults], PoCA [Protection of Children Act], health and safety, moving and handling, food hygiene, and grievances. But nothing about independent living. Practitioner

But other participants made clear that changing attitudes among service users were already having an effect. A practitioner working with younger disabled people said that different approaches in education, promoting independent living, were having an impact on younger people’s expectations of services. I think the schools and colleges do promote self advocacy and life skills and communication skills, so they come here with that and they are quite capable of saying what they want. They are brought up with more of an expectation they should have a say and be listened to. Practitioner

This service actively looked for young people who were motivated to move on and live active lives when it had vacancies. We don’t have a formal check list, but you have something in your head. Ideally we would only offer a place [here] to someone who is going to take full advantage of the extra staff and the independent living skills, so people are perhaps well motivated to move on and live in their own home, but need some extra input to help them get their independent living skills, who are going to college or in to a work placement. People who come here are expected to have college or work to go to. Manager 162

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Support for service users However, many service users needed support and preparation to move on to more independent living. Service users said: We do our laundry and do our room. We are encouraged to do things. Service user You have to watch your hours. But I don’t understand the hours. I need someone to tell me, to show me the hours, but they haven’t done that yet. Service user I want to move to independent living. In a place of my own with help and support…. I don’t feel I’m getting the right information or help what it’s all about, or what type of support I need. Service user

Practitioners said: Disabled people need more training for them to be more confident. You can have [a] person-centred approach, but if people aren’t willing to confront and say, ‘This is what I want,’ it’s not going to happen, is it? Practitioner You can’t drop it on somebody – ‘In two months’ time you will be living in a bungalow with two people…’ You can’t do it. Practitioner

One manager explained that in a previous job, she had supported long-term residents in a ‘home for blind people’ to move on to live ‘in the community’. The residents had been there for between 25 and 30 years. The process took about three years and the service employed a rehabilitation officer. Another manager explained that the process of change would be demanding because: The Trust don’t have a great deal of experience in working with people with learning difficulties in an independent or semiindependent environment. Manager

Workers in another service explained that they held regular events to promote independent living. They were events that brought together many different people and helped them to talk about and make plans for doing things for themselves. 163

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One of the things that we organise in our area are what we call ‘moving on events’.... That is three-monthly events where service providers, commissioners of services, service users, family carers, all come together and the reason that they are called moving on workshops is it is about how do we support people in a more person-centred way to move on in anything that they want to do. They are really enjoyable get-togethers and I think pretty useful as well, because people usually say how much they have enjoyed it and how useful they found it. Not known

Case study Supporting young disabled people to move on The residential home for young people, Pippin Close, saw itself as preparing residents for independent living. A manager described how the service was commissioned. They wanted a stepping stone to avoid so many young people ending up in residential care. They recognised to do that would cost money, as it would have to have additional staffing, so that people could do the sorts of things we have been talking about – going to the pub and whatever it might be. The fees here are half as expensive again as the fees next door [a residential home for adults aged over 25], but they recognised that they would only be funding it for a short period of time. People can only be here a few years. The investment was worth it for the long-term gain for them in cash terms, but also for the quality of life of the young people. Manager Service users spoke very positively about how this home helped people feel ready to move on to live independently, by trying to model this in its own practice. It’s really important that we have the opportunity and choice of what we do and how we do it. It’s important that people support us to change negative things into positive ones. Service user

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Institutionalisation [It is like] everyday life, but in one of these buildings. Service user Yes, it has made me a lot stronger person. I can see myself moving out, getting my own flat and getting a job in the future, doing all the normal stuff that a teenager would do. Service user I am much more independent than I was before. It is the best place I have been. It has been the best time of my life. The support has given me the confidence to do things I would not have done before. Service user I really like it, it’s better than where I was before. Service user Although these last comments are very positive, it is important to remember that people’s baseline and expectations were often very low. Also, not all their comments on this matter were as positive about this particular service. I was walking and had no problems, didn’t fall or anything, but they said the staff’s backs are sore and all that from picking you up…. I didn’t feel that was sticking to what I believe in and sometimes the support for going out to work isn’t available either. I thought that was the whole point of the place – to develop your independence and plan for your future. I don’t feel there is enough time to plan those sort of things. Service user Some staff stressed the need for service users to improve their social skills. But I think part of the planning can instigate the need for socialisation, especially for people with say, learning difficulties, because they tend to sort of form a peer group of their own, because their communication skills with other people is difficult. Practitioner An awful lot of it [independent living] is maturity and getting on with other people, and [developing] their social skills. Manager A social worker who had made referrals to Pippin Close, thought it was best for young people who were interested in developing skills for independent living. She said it was a good stepping stone to establish themselves and then move on. She felt that choices open to young people with physical impairments were limited and that independent living was more realistic when they were a little older. However, young people have to leave Pippin Close before their 25th birthday. 165

Supporting people This could create another set of problems for service users. The goal of independent living was blurred by the need for ‘throughput’. One service user expressed his worries about the short term nature of the service when he spoke about what he wanted when he moved out. Something that I feel is home, I haven’t found home yet. Pippin Close is like a stepping stone, to lead up to the next stage. Service user

CASE STUDY ENDS

Participants highlighted three additional problems which they thought contributed to service users’ dependence and kept them institutionalised and in institutions. These were their restricted access to: • employment • money • housing Each of these barriers could have an enormous effect, restricting people’s lives. Often they operated in close interrelation, limiting service users’ daily opportunities and their hopes for the future.

Employment A small number of service users made specific and explicit comments that they felt that disabled people were discriminated against and not given a fair chance when they are looking for work. It seems impossible to get a job for a lot of people, even with Access To Work and the DDA [the Disability Discrimination Act]. There is no way of proving discrimination when you apply for a job as a disabled person…. It is pointless giving interviews unless you are positively considering employing them. It gets people’s hopes up…. A lot of younger [disabled] people are desperate to work. I don’t think there is an equal opportunity. There is more chance if you become disabled and your employer might keep you on. People ask me for advice. I can’t say if you work hard and get qualifications, you will have an equal shot, because I don’t think you do. Service user

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Some people spoke about the generally negative approach adopted towards disabled people getting paid work. They felt that rather than supporting service users to gain skills and find employment, the pressure from government was increasingly to get them off benefits, like the old incapacity benefits, now replaced by Employment and Support Allowance (ESA). My wife was recently aggressively asked by the government through one of their various agencies (she’s got mobility problems that prohibit 94% of her mobility and everything you do because of it). They wanted me to drive in our car at our expense, from Monday to Friday … 28 miles there and 28 miles back. I’m supposed to drop her off at nine o’clock in the morning so she can sit at a table [in a workshop], with other people, doing three turns on a screw of a bottle – that’s all, nothing else – all day long. And they wanted us to be there from nine in the morning to five in the evening all week and without money for transport…. Guess how much they were going to pay her for a week’s work? Two pounds! Carer/relative The government wants to get people off benefits. Service user They are approaching it by shoving people off benefits, rather than facilitating employment. Service user

There was a feeling that most of the jobs that disabled people were able to get, were far from what they aspired to. I know a few of them have desires to do meaningful employment, not just somewhere where they go and do a bit of packing now and again and being on minimum wage. They want to get off benefits. Service user

In one of our partner areas, there was a good example of an independent organisation providing service users with support in finding and maintaining employment. The organisation worked in partnership with employers to try to find the right vacancy for each of its service users. It was proud of its record of success. Some service users worked with a charity sending clothes to Eastern Europe, another was paid to collect glasses at a local pub.

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People used to see it as unusual and a ‘kindness’ that they got a job, but it is now an expectation that they will get one. Most people that [name of organisation] works with, were previously in institutions and had no expectation that they would ever work. Manager

However, this service was still restricted by the kind of broader attitudinal barriers which we discuss later (see Chapter Ten). There is a catch with mine. I am looking for a placement for a wheelchair. Some companies won’t take wheelchairs. The kind of job I’m after, a company are very keen on taking me on, but when they hear about a wheelchair they say ‘No, no.’ Service user

Money While long-term use of social care services is particularly associated with living on low income and being restricted to benefits, people living in residential services face additional financial restrictions. This can be seen as another of the institutionalising effects of such services. For most of us, being in control of our financial affairs is something we take for granted with adulthood. Some service users made this point. One aspect of preparing for independent living to which they attached particular importance, was learning how to manage money. They also highlighted the value of such ongoing support in dealing with personal finances. For example: I have to think about bills. I have got into so much trouble with money because I love spending it and most of it is down the pub or around town. I’ve got two key workers and the manager who helps if I have money problems. I have to be careful I don’t get into too much trouble, because otherwise I won’t be able to pay the bills and then eventually I’ll get into too much debt and I’ll be behind with all my money. Service user I would like to be informed of what entitlements I have and what it’s for. Service user I know there’s a budget and things. I know we have to budget, but sometimes I’d like someone to call in to help me with [my] money situation and things like that. Service user

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However, people who live in residential care funded by the state have their fees and benefits paid directly to the home. All they receive is a small amount of ‘pocket money’ after all the charges have been deducted. In a house, where you are paying rent and getting Income Support, you get much more control over what you spend your money on. In a care home, if you’re funded by the state, you get £17 or £18 a week for paying for your leisure activities. Manager Residents only have £21-£22 per week, so all the things they would love to do, they can’t afford to do. It’s difficult for them in that respect. Manager

Under these arrangements, service users are not directly involved in budgeting or making payments themselves. If you’re living in a home, as I understand it, and certainly in some homes, you’re given, like, pocket money, because the money goes straight to the home and you get pocket money out of it. Service user [Residents] only have an allocated amount which is minimal. Until they move, they can’t deal with their own money properly and learn how to budget. Practitioner

These problems have been further highlighted by Coalition government proposals associated with taking money away from people living in residential homes, by stopping the mobility component of the Disability Living Allowance (DLA). Two service users told us about the problems friends of theirs with learning difficulties had, who lived in residential homes. They contrasted this with their own experience of living independently. This is a friend of ours who likes spending [money] on fags and she’s got to prove that she’s not spending it on fags…. And they’re not allowed to take their money out of their banks. First service user … in case they spend it on themselves, which is a shame, because we can draw out of the bank ourselves and take our own money out. Second service user

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One manager contrasted current rhetoric about ‘self-directed support’ with such continuing realities denying people skills and control over their money. All this talk about self-directed support and ‘in control’ and all that, is all well and fine, backing the voice of control, but we’re talking about the most vulnerable members of society, or those sections who are really hard to meet, and unless they themselves as families and users are given the skills to manage their own budgets and all that, you know, it’s quite an abstract idea. Manager

Housing The isolating effects of residential services are not only due to any inherent limitations they may have, but also to broader problems facing service users seeking to access or move on to suitable housing. The lack of adequate accessible housing creates a significant barrier to independent living for disabled people. People living in residential homes also appear to be disadvantaged in the allocation of social housing. The lack of suitable local housing The service users living in the residential services we worked with, highlighted the lack of appropriate, accessible accommodation to move on to, as well as the lack of independent housing with support. One young man explained his lack of choice when he moved into the home. I had no other option, I had to go there, but I thought I would meet new people…. I would have rather have gone into a house with my own carers, because when you are in with 10 others all sharing it sometimes doesn’t work out. Service user

Many of the young people living at Pippin Close had experienced this problem first hand. Workers there said: Housing is a huge problem for disabled people in [name of county]. There is a housing policy of building new affordable housing, but nothing for disabled people. I think they could have made sure they build one or two flats for disabled people in each new development, brand new and adapted. We could fill them. Manager

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You can only be person-centred to the point of the resources that are available to you. So say you wanted to move out of Pippin Close for example, there might not be housing nearby available and so you might be forced into the situation of living somewhere where you don’t want to live because that’s the only choice. Not known People do move on before they are 25. Others don’t want to move when they are 25, or they do, but there is nowhere for them to go. That is the main problem we have. Where do they go? Manager

One service user suggested that the service could do more to assist young people to find housing. He said it assumed that they would move in to other provision run by the same organisation on the same site. I get the impression they want to keep me in [name of organisation]. [There needs to be] better planning and support for moving out. Obviously what they think is they are either going to go into Number two [home for adults], or Number three [independent flats], but I’m going out into the community which is a bigger step. Service user

A practitioner, on the other hand, saw the lack of an adequate range of tapered support as a problem. [Service users have little choice of where to move to.] Most of them see Number three as a good place to start off on that, but once they leave, that is it. It’s OK, but I think it hits them quite a lot. I think it would be better to have another place from here, their own home, so that they can experience it for a few weeks before they make that big step. But once they have gone from here, that’s it. Their place has been taken. It’s a big step from going from here, with people around, to moving to your own place and being on your own really. Practitioner

The lack of options for service users was striking. There seemed to be few genuine choices open to them. There was a safety net of other residential homes, but a social worker explained that these were often inappropriate for young disabled people as they mainly catered for older people. Meanwhile service users lived in hope. I’ve got a plan in my head, but I’m not quite sure how it’s going to work out. I know what I’d like to do and where I would like to live 171

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in the future…. It has to be planned and assessed and everything, so I have to hope. Service user

One service user who was going through a protracted search for accommodation, expressed his frustration with the support provided by the local authority housing officer. She kept making every excuse under the sun, saying,‘We haven’t got these properties,’ even though we weren’t after adapted property [council adult services offered to do the adaptations]. I think it’s horrible that there aren’t many places that people can move on to. Service user

Another service user spoke about the changes that had occurred in her life since living at the residential home, feeling that these now equipped her to live more independently. For me it has [changed] – moving on and things. Now I am thinking that when I move on I definitely want to go to Number three [the flats]. Before I wasn’t sure where I wanted to go. Because I am getting more confident and things, I’m getting a say. My decisions are becoming real in my head and I’m saying to my parents, ‘You know, you’re not the ones making my decisions and at the end of the day it’s me.’ And I’m sticking [to that] and because I’m gaining more independence and I have got the independent [living] skills and the confidence and when things come up, I’m the first to say ‘Yes I’ll do that.’ That’s why I think Number three is for me. Service user

The residential care trap Many service users living in residential homes had been on their council housing list for a long time. How long they are on the housing register is like how long is a piece of string. It depends on what they require, which areas they have chosen. If they were to say I will go on the housing register for the whole of [name of county] and whatever comes up, I will take it, then it will be quicker. Then you are looking at your adaptations…. Manager

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They seem to think ‘Well I want a flat. Why hasn’t it arrived?’ and they’re having to wait that much longer than everybody else, you know. Practitioner

It is not surprising that many of the young people at Pippin Close wanted to continue living locally, rather than move to other parts of the county. They had got to know the town, made friends there and many had attended local colleges. They preferred to live in a place where they had links, rather than make a new start somewhere else. Hopefully stay in [name of town], that’s the plan. I don’t want to go anywhere else, because I have friends here. I have been on the [housing] list for two years, but no one has found anything for me yet…. I will stay until my time is up, but I’m certain I’ll be ready by then. Service user

The housing system fitted poorly with service users preferences, however. The manager told us of people being on the housing list for several years. She said they encouraged young people to put their names down as soon as possible, but this could have its own disempowering effects. There are a lack of resources and suitable accommodation. What we now try and get young people to do, is once they have settled in, we start talking about moving on. It is really quite mind blowing for them, as they have just arrived and think they don’t have to worry about that. We get them to fill in the forms and get on the register and there is a points system that comes with that. The sad thing is, in [name of county], if a property comes available and the young person does not feel ready to take it and so turns it down, they would have to go right back to the bottom of the list again, which seems really unfair. It makes it a difficult balance for us about when to try and get them on the register, but not wanting a property to come up too soon and they go back down again. Manager

The manager of another residential service explained that some service users had had their names on the housing list for years without any success. As he said: They are not seen as high priority and housing priorities change from year from year. All of them are regarded as being safe because 173

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they are living in residential care, so they are not at risk. This works against them. Manager

Thus because residential homes provide care and support, their residents are not seen as being a high priority on housing lists. They are not homeless, or in imminent danger of becoming homeless. At Pippin Close, residents are unable to plan ahead as they only become a priority for housing right at the end of their stay (when they are facing homelessness). Until a person is nearly 25, I don’t think they are even looked at, until we get to the point where we say ‘We are going to have to make you homeless.’ Manager

This housing problem for disabled people was identified by the Disability Rights Commission. Many disabled adults living in institutional settings, supported housing or with relatives, are unable to establish sufficient ‘points’ for social housing, preventing their move to independent life. (DRC, 2007, p 43) One young person at Pippin Close was considering moving to another county because there was another residential unit for young people there that she would like to live at. This type of specialist accommodation is rare. It meant her moving away from her friends and family to an area she had no links with. During our project, a young disabled man living in Pippin Close moved into a bungalow. He had had a protracted struggle to find it. Adult services paid for the necessary adaptations. He had live-in personal assistants. Sadly he died three months later. The manager of the service expressed great frustration that after all the time and effort taken to find the bungalow, the local authority quickly removed the adaptations and allocated the bungalow to a non-disabled person. She felt that this was wasteful, as there were other local disabled people who would have liked to live there.

Institutionalisation or isolation? We have seen some of the isolating and institutionalising effects of living in residential services, reported by those involved. Disabled people developed the philosophy of independent living to challenge this and 174

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to support service users to live on more equal terms in mainstream society. But there have long been fears that de-institutionalisation may also be used to making savings rather than to meet people’s needs. It becomes another site for the tension that frequently emerges in social care, between policy and practice being funding-led and needs-led. A few service users suggested that local authorities might promote the idea of people moving out of residential accommodation or not attending day centres in order to cut their costs. They were concerned that approaches like direct payments and independent living were attractive to local authorities because they could be cheaper than residential care. I think it is quite frightening for me to leave the hospital, because I have been there a long time, but the powers that be want me out and I am going to be out. It is all to do with money. Service user I can see where that fear comes from. If people stay at home and don’t receive services, it doesn’t cost the local authority anything. It wouldn’t happen for the loud physical disability lobby, but if you haven’t got that voice…. Service user Being cynical, it could be argued that the reason the local authority are so keen on direct payments is because it’s actually cheaper. Service user

Several services involved in our project described one of their aims as tackling loneliness and isolation. They saw social support as an important part of what they could offer. For example: And the social aspect for a lot of people has made a great difference – people who were often living alone with varied levels of support, usually from families, very isolated but actually coming here into quite a social setting. Manager

Many service users had major concerns about moving out of a residential service on to direct payments. They were worried that they might end up without the support they needed to live more independently and once they moved, would find it was too late to change their minds and go back to where they were before. As one man living in a residential home put it:

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I do [want to move out] – as long as I get the back-up support I need. Service user

A number of people, both service users and workers, expressed concerns that living alone could be isolating. When our young people leave here, they have got the fear they will go to a flat somewhere and every evening they would find themselves alone – and that is a fear for them – that they will be lonely. Manager Yes, it was monotonous. There were times on my own and it was awful. I can’t stand that. Service user

Many people, particularly practitioners, questioned what they saw as an assumption in social care services, that living on your own was better than living with others in a supported environment. It worried them that service users could become isolated and lack opportunities for social contact. Some felt that interdependence was better than independence. Sometimes independent living was confused with enforced independence and some people felt services also confused the two. What do we mean by person-centred planning? Are we talking about sharing communities or are we talking about individuals having to do things on their own? Not known What’s wrong with also setting up homes, you know, good homes, that are shared and [where] people can end up supporting each other? I work in the mental health field. We have supported housing. A lot of people have their own rooms, their own tenancy, live in communal houses. They do have problems, but on the other hand the promise of getting well is to be moved out into independent, isolated living and I think it really worries me, this whole process of independence and, if person-centred means on your own, isolated, do what you want. Practitioner I question the whole way that society thinks that independence is progress. You know, I think it’s an amazing thought and I couldn’t wait to leave home and get a flat with loads of other people, you know, and that was great. But that isn’t so much a mindset anymore is it? It’s more I’ve got to have my own, to take my own choices 176

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and to decorate the way I want and watch the programmes I like, rather than an attitude of, I wonder how we can have fun together and look after one another and share the costs. Practitioner For the majority of people, they welcome the challenge to live more independently, but with support. Out of 14 [here], there is only one person who says he wants to be put on his own. And being independent doesn’t have to mean being out there on your own. So most people are saying ‘Yes, I’d like to live with X, Y and Z – they’re my friends – not 14 other people I didn’t choose to be with.’ Not known

Some practitioners said that people who made good progress living in a group environment were often then encouraged to move on to live in their own place. But they felt that this wasn’t necessarily the best environment for everyone to succeed. They worried about what they saw as individualised approaches to living and support, which were not necessarily backed up with adequate social support. The price of success was that they would then have to move out and live on their own. And it’s like what? You’re on your own in this home, this place, it’s your home, but everything else has gone. Sometimes … fact is that person can’t really live on their own anymore. Practitioner I think that in my organisation it’s very much about progress, move on, move on into your own places. And the reward of getting better is loneliness, isolation, to move into ‘independent living’. Whereas actually, I would sometimes call it … quite dysfunctional. Practitioner Forming good relationships, that has to be at the centre. It’s not about having your own cooker, cooking your own food. It’s about forming a really good relationship. Practitioner

One practitioner expressed a view that it’s often better for service users to live with others, and that part of being person-centred is being able to offer choices in who you live with, as well as what kind of service you use. Be independent sharing with other people. If it comes out that they are supported to do that, so, they’re not left. We all know 177

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the horror stories of people who have been out in community totally on their own and it’s been a spiral downwards. But to acknowledge what people are saying, ‘Yes, I want to be more independent, but don’t want to live on my own.’ It’s respecting that choice. Practitioner

The importance of getting together We have heard about the isolating effects of living both in residential services and in your own home without adequate support. It also became clear that just being set in group situations with other people did not necessarily mean that people were not isolated or lonely. In contrast, however, service users talked about the benefits of getting together in groups as a means of overcoming isolation and disempowerment. This could be in small or larger numbers, formally and informally, to socialise and have fun, as well as to do things more actively together. Many service users talked about the benefits of doing this, from sharing information and getting support, to gaining strength in numbers. They valued services which helped them to do this. They welcomed opportunities to meet people with shared experience, who faced similar barriers in their lives. They said it helped them to overcome isolation and to have a better quality of life. I go to a centre in [name of town] and a lot of the things that I am accessing now, I only found out about from people that actually attended the centre. And from having conversations with them, you pick up on little things. They might say I got this from there, or somebody there told me how to go about this and you have never even heard about it in the first place. Service user We get together as brothers and sisters, talk, share difficulties. [The trips] get us out of the house. Carer/relative In the past we used to sit at home feeling alone, worry about things and what’s going to happen in the future and generally get very tense about things. Coming to [a carers’ group] has changed all that. The walls have been broken. Carer/relative

Practitioners talked about the similar benefits that they felt they gained from getting together.

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[Meeting with staff from other homes in the organisation] is useful. It does help and make a big difference, to think they have got the same problems we’ve got. Practitioner In our organisation, they are very good at posting us huge questionnaires with tick boxes. What you get from sharing something here [Standards We Expect get-together event] is the feeling, the passion, the relationship; and it doesn’t feel just like a paper exercise. Practitioner

A member of a coalition of disabled people saw it as a natural extension of disabled people meeting together in groups. The social model of disability underpinned its work. They had a membership of over 30 organisations, mainly organisations of disabled people, as well as 300 to 400 individual members. [The Coalition’s ethos is] ‘Nothing about us without us,’ so [in principle] it is the ultimate example of disabled people taking control of their own lives. Service user

In Camchester a group of older people had come together to seek improved services for older people. It was made up of local older people who were service users, carers and ‘challengers’. Members of the group played an active role in the steering group for our project’s work on end of life care in the city. The group was funded by the Department of Health’s POPPs (Partnerships for Older People Projects) programme. This funding was only available for a limited period of time, but the group had already secured funding for a further year and was confident of securing more for the future. It had built relationships with local officers and employed a coordinator. A member of its steering group said: Through them, the voice of older people is becoming firmly established, recognised, acknowledged and valued on a wide range of public service issues. Carer/relative

Not all service users, however, wanted to get together in this way. Some, we were told, did not identity as disabled people. They did not relate to joining groups of disabled people. It’s almost as if they don’t mind being together here [in the home] to meet and discuss things, but they don’t want to mix with other 179

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disabled people. [They don’t] want to be associated with other disabled people…. They don’t associate themselves as being disabled. Manager [User involvement meetings] – like here they are young and outgoing. They don’t want to join as [they see that as something] disabled people [do]. Manager

Summary While de-institutionalisation has been a goal of modern social care, the lives of many residential and long-term service users are still restricted by institutionalisation. They express strong feelings of disempowerment. By undermining people’s confidence and skills and imposing dependency, institutionalisation continues to create major barriers in the way of independent living and person-centred support. Service users’ comparison levels and confidence are often low. In residential and segregated services, supporting people to do things for themselves, seeing them as individuals, exploring their preferences for the future, encouraging them to learn from people who are already living more independently, working to involve them in change, all emerge as ways in which services can helpfully begin to overcome these barriers. Training and capacity building for both staff and service users also work to challenge institutionalisation. Three additional problems are associated with residential and long-term use of social care. These are lack of control over money, particularly for people in residential services, major barriers in the way of gaining valued employment and restricted access to suitable, accessible housing, trapping people in residential services and preventing them from maintaining local links and networks. Positive goals of supporting people to live more independently can be undermined by pressure on services to maintain a throughput of residents and other service users. Some service users fear that efforts to move them on from residential and day services are budget-driven rather than needs-led. Some services specifically seek to address the loneliness and isolation service users may face, but there are fears among both service users and workers that the drive for people to live independently in the community, sometimes actually results in service users living alone, without adequate support and becoming isolated. People can be isolated in both group and community-based settings. Service users highlight the importance of getting together, both formally and informally, with each other as a way of improving their 180

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lives, increasing their confidence and exerting an influence. Some service users are reluctant to identify as such and link up with others and are therefore denied this source of support. References Barnes, C. (1991) Disabled people in Britain and discrimination, London: Hurst & Company. Bowers, H., Clark, A., Crosby, G., MacDonald, R., MacFarlane, A., Maclean, M., Patel, M., Runnicles, D., Oshinaike, D. and Smith, C. (2009) Older people’s vision for long-term care, York: Joseph Rowntree Foundation. CSCI (Commission for Social Care Inspection) (2008) The state of social care in England 2006-07, London: CSCI. CSCI (2009) The state of social care in England 2007-08, London: CSCI. DRC (Disability Rights Commission) (2007) Changing Britain for good: Putting disability at the heart of public policy, London: DRC. Goffman, E. (1968) Asylums: Essays on the social situation of mental patients and other Inmates, Harmondsworth: Penguin. Harding,T. and Beresford, P. (eds) (1996) The Standards We Expect:What service users and carers want from social services workers, London: National Institute for Social Work. Kemshall, H. (2002) Risk, social policy and welfare, Buckingham: Open University Press. Powell, E. (1961) ‘Water tower’ speech (http://studymore.org.uk/ xpowell.htm).

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Organisational issues ‘There are some individual support workers who are extremely person-centred and who really get what it means. But organisations, because they’re organisations, don’t get what it means really.’ (Manager) Standard Seven: Reducing organisational barriers

Organisational barriers in the way of person-centred support, created by increasing bureaucratisation and managerialism, must be reduced. They inhibit good practice and restrict service users’ rights, choice and control. The associated emphasis on negative risk undermines the values of independent living and must be replaced with a risk awareness that supports service users’ right to take positive risks. Services should work in partnership with service users to consider risk creatively and proportionately within the context of learning and independence.

Introduction This chapter focuses on organisational issues affecting the delivery of social care and the prospects for advancing person-centred support. A significant contradiction in social care is that while over the years much of the focus of reform has been on organisational change and restructuring, organisational issues are still highlighted by both service users and service workers as key barriers in the way of person-centred support. People from a very wide range of organisations and projects have contributed their views and experience to this book. These include statutory, voluntary and private sector organisations, operating in the health, housing and social care fields. They have very different histories, cultures and philosophies. They provide a wide variety of services and range in size from small to very large. This means that it is difficult to generalise about them. They have different aims, 183

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philosophies and systems of accountability. Yet all seem to have been affected by the same major development in public policy, which in turn has had major negative effects, from what people have told us, on the activities of both service workers and service users. This development has been the move to managerialist/consumerist approaches in public policy and services, including specifically social care, where such ideas were pioneered in the early 1990s, with the community care reforms. Managerialism has been defined as: ‘the introduction of business-oriented principles and personnel into the running of the public services (Miller, 1999, p 33). It is seen as an aspect of what has come to be called ‘new public management’ (NPM) – ‘a shift towards managerial forms of organisational co-ordination’ (Clarke et al, 2001, p 6). These are characterised by an emphasis on: … continuous increases in efficiency, the use of evermore-sophisticated technologies, a labour force disciplined in productivity, clear implementation of the professional management role, managers being given the right to manage. (Walsh, 1995, p xiii) The rhetoric underpinning this move was that it would lead to more ‘customer’ or ‘consumer’ focused services. The political new right that advanced these ideas from the 1970s, also presented them as part of its commitment to the market, as a corrective to what it saw as the bureaucratising tendencies of state services. Yet what we see here from what people have to say, is that they have the opposite effect. Service users and workers highlight two consequences this development has had. These are first, restrictions on what service workers are able to do, because of the bureaucratic constraints operating on them. This is linked second, with restrictions imposed on the lives of service users because of organisations’ concerns that their unconstrained behaviour may create problems for them. Both are symptomatic of what Donna Dustin has described as the ‘McDonaldization’ of social care (Dustin, 2007). This grew out of the work of the US academic, George Ritzer, highlighting the destructive way in which public services were being reshaped in the image of fast food production (Ritzer, 2004). Dustin explores care management through the four key principles associated with ‘McDonaldization’. These are efficiency, based on narrow economic and bureaucratic judgements; predictability, through reliance on standardisation and a procedural approach; calculability, reducing everything to numbers and finally, surveillance, closely controlling and monitoring workers. 184

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Workers in her study describe a system based on highly prescriptive procedures, checklist approaches, dependence on technology and computerised systems and cost containment. Instead of being providers of support, social workers became purchasers of services. Instead of being distributors of resources, they were now meant to be guardians of funds for their organisations. All these problems were highlighted in the consultations held by the Social Work Task Force and in its final report (Social Work Task Force, 2009). All of these pressures were also highlighted by participants in our project. This extended beyond care managers to projects working with a wide range of service users.

Increasing bureaucratisation Service users and providers framed many of these issues in terms of the increasing bureaucratisation of services. It’s hoops isn’t it? We’re jumping through hoops. Practitioner

Practitioners particularly spoke of increasing levels of bureaucracy and paperwork that were taking up their time. They saw this as a major problem and a big barrier in the way of working in a person-centred way. They spoke about the difficulties created by systems of allocating support and the requirements of funders and regulatory bodies. In the past, the social worker would do the assessment and set up a care package, but now there’s a process that we have to go to a panel and if it’s beyond a certain level of cost, we have to go to a second panel at county hall. Practitioner But the pressure does mount up at times. The admin[istrative] pressures and the organisational pressures go against you and the work you are doing directly with people. Practitioner

Many managers and practitioners felt that bureaucratic systems and tasks took up time practitioners should be spending on the core purpose of their jobs – working with service users. The coal-face workers now have to do a lot of the administration and so then, we are taking away from the clients, I would say. Practitioner

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Sometimes the time is a barrier. I have a lot of administrative paperwork to complete. I don’t think 15 hours is enough. Practitioner If people within social services find it difficult to find a way through the process, what’s it like for people outside? It’s slowed everything down. It’s also put a time pressure on workers. It comes back to not having time to spend with people. Practitioner There is a lot of workload pressure, so having the time to do person-centred work is seen as very idealistic, not possible with the amount of case load you have. And reporting back and the numerous paperwork and computer generated stuff that you have to complete in order for somebody to tick the boxes to say so many assessments, so many reviews, have been done. Manager

Some practitioners said that their jobs had changed over time, with less time to form relationships with service users. It’s the lack of connection again isn’t it and the lack of relationship, you know. It becomes a paper exercise…. I find increasingly that my work is becoming a paper exercise. Practitioner

Such administrative activities are a source of tension between practitioners and their managers, as managers are expected to make sure that they are undertaken. One practitioner, for example, spoke of the way that the demand for paperwork failed to take account of the need for practitioners to be adaptable and responsive to their service users on a day-to-day basis. I think management need to be a bit more understanding about the workload of staff who have been delivering the service…. They forget that we’re working with individuals and it does take a lot of time. Things don’t always work … and crises come up every day. Every day’s different. You don’t know what you’re going to walk into. You don’t know what’s going to happen from one day to the next and if something [arises] unexpectedly … you got to prioritise in order and always [to] leave the individual in whatever issue’s arisen. It’s more important than paper work. Practitioner

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Increasing complexity Not only are practitioners faced with an increasing burden of administration themselves, but they have to go through increasingly complex bureaucratic tasks with service users to access support. Experienced practitioners explained that this was taking more time and creating more problems. The paperwork that services expect service users to complete could be difficult, both because procedures were complicated and forms inaccessible. It is a problem when people come to us in a crisis because of this difficulty with resources. You’ve got to go out and do the assessment, go through the panel process and go out and find the care. So it’s much more difficult now to do anything quickly. Practitioner Forms and paperwork can become a barrier. It can take a very long time to do. I had a client who had to stop and have a Mars bar so she didn’t slip into a diabetic coma while I was there, because I had been there so long. It starts to become a bit abusive! I think I should go and let these people have some lunch. Practitioner

Service users were often left feeling anxious. Why can’t they have forms that are very easy to understand?... You get a form and you’re supposed to fill out what’s wrong with you and you can’t understand the form and pieces of paper, you can’t understand it. How can you make it easy for people like me, who are not very good at reading? Service user

Since the move to the market in social care and other public services, increasing reliance has been placed on bureaucratic systems of regulation as a means of safeguarding standards and measuring and maintaining quality. However, we found that such an approach could impose arbitrary and unhelpful restrictions both on services and service users, increasingly intruding in people’s lives. Case study Imposing inflexibility This was instanced by the service which was registered as a unit for young 187

Supporting people people. Service users were not permitted to continue living there once they reached the age of 25. This followed from recent legislation preventing people over that age living in the same facility as younger people (HM Government, 2004). This could create significant problems as young people approached the cut-off age. This pressure was intensified, as we saw in the last chapter, by the lack of housing options for such young people. This created serious difficulties for the young terminally ill man who was expected to move on at this difficult time in his life. In turn, the unit felt it was left with no room for manoeuvre. We feel we are absolutely NOT allowed to have him here after 25 – it would be against the law. It is part of the Children’s Act that people over 25 should not be living with those of 16. Manager As we saw earlier, it was possible to rehouse this young man, as his situation was treated as an emergency, but the whole experience was stressful for him, his family and staff. The manager of this service also highlighted how its policy about recording information could deter service users from speaking openly. The service recorded a range of personal information in an individual service plan, including information about the service user’s medical history and education, their hopes, goals and future plans. Sometimes it can make the young people not want to tell you things. Sometimes they like to talk things over, but they know things will get written down. They say, ‘When I was at college,’ or ‘When I was at home, no one wrote all these things down about me.’ Manager

CASE STUDY ENDS

Imposing diversions Another expression of managerialism and bureaucratisation that participants highlighted was the predominating ‘target culture’. Many participants were concerned that requirements to meet targets were having a negative impact on providing person-centred support. Some services struggled to gather all the information required. Some expressed concerns that targets were a blunt tool that did not effectively

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measure the positive outcomes of their work, for example preventative work. One service provider said: One of our biggest problems in dealing with the top coming down, is performance indicators which have been set by the government and that’s what’s leading the service. And that’s nothing to do with what individuals want – a person-centred approach. Again, we’re encouraged to do reviews and assessments and things, hit targets, deadlines and things, which in our work, don’t necessarily apply.

Practitioners and managers frequently said that services were being judged on how they performed against particular government indicators. There was wide concern that this could lead to services concentrating on meeting such ‘key indicators’, to the exclusion of other important aspects of their provision. At the end of the day we are going to be judged by the Department of Health and social workers on certain performance indicators; the number of assessments, the number of reviews. The personcentred approach, I don’t think is a very clear indicator at this moment in time, as far as I am aware. Manager … indicators like how many people get intensive home care and how many people get direct payments. But then we have some, [where] the more you do of one, the less you do of others – the more homecare – the less direct payments. It’s like being put on a spot and told to run in two directions at the same time. You can’t do it! Practitioner I think that targets and resources are a big thing, you know, in our work. One of the local authorities runs rent deposit schemes and the officers have to reach certain targets and that’s the overriding thing. And then with the charitable schemes, it’s lack of resources so that they’re trying to meet funders’ targets and – you know – to keep the funding. So a lot of the time, perhaps, the person-centred stuff is squeezed out, because they want to meet a target and they aren’t helping people, perhaps, in the long run. Manager

Some service providers spoke of the need for measures of personcentred support and a shift in emphasis away from strictly numerical, quantitative measures. They felt that these ‘hard’ targets did not necessarily demonstrate the value of their work. They preferred 189

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to concentrate on ‘soft’ outcomes which they felt could be more meaningful. But there wasn’t agreement about this: We’re actually now learning to record what they call ‘soft outcomes’, or something or other, in order to justify their existence, which is a load of old twaddle really, to be polite! Not known

The development of such soft outcomes was pioneered in the fields of adult learning and employment projects. Reviewing this development, however, Butcher and Marsden offer a cautionary note: The need to measure soft outcomes and the distance travelled by service beneficiaries will not go away and service providers in the voluntary and community sector will increasingly be required to provide evidence of these outcomes to satisfy funders. (Butcher and Marsden, 2004, p 42)

The appropriateness of targets The Coalition government, which came to power in 2010, was very critical of a ‘targets-based’ approach and stressed that it would leave such matters to local discretion, instead of directing them. However, its continuing emphasis on ‘outcome’ measures suggest that the move away from targets might be more illusory than real. Some people working in services expressed concerns that a preoccupation with targets could miss fundamentally important aspects of a service. The process could then become cosmetic with bad outcomes hidden by wrongly focused targets. And in our statistics they said ‘Oh, we’re doing really well. We’ve had so many move-ons,’ and we said,‘Did that include the guy who had jumped out of the window?’ And, oh my God, that’s a statistic! Sorry, that’s a horrible story, but it’s also, you know, that actually is a statistic and that’s what we’re driven by, isn’t it. This many people moved on, ‘well done’. Practitioner For us outcomes are that people can move on and make choices for themselves and be successful after they have left here. Manager

As we saw in the previous chapter, funding for services is often directed at supporting people to move on and ‘live independently’. A number of practitioners believed that this culture of ‘moving on’ failed to recognise 190

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the complexity of living independently for some service users. They felt that for many people maintaining an existing level of independence could be a worthwhile and significant achievement. This should not be crudely equated with low expectations, on the part of either staff or service users. Measuring success is much more complex than gathering information about the number of people who move-on from a service. I think funding seems to be very focused on outcomes and the pressure to prove those outcomes…. Often it seems to me that perhaps maintenance is a real achievement; maintaining someone in their house, keeping them out of hospital. Maintenance should be keeping something going. I find funding is always about new initiatives, new ideas, new goals and sometimes, just keeping your house maintained is a real achievement. Practitioner

How person-centred are targets? Many service workers pointed out a major contradiction between the desire for services to be person-centred and the current use of indicators and targets. They said that such bureaucratic targets often actually worked against services being person-centred. As soon as you put a target on something you immediately lose the person-centredness don’t you? Immediately you’ve got to meet something, but that’s not how it works. That’s when you know that they don’t get what person-centred means, I’ll give you a tick list of things, ‘Have you done that?’ you know! Manager I would really like to send the message that not everything can be measured, because what is a huge achievement for someone might not be for another, and vice versa. I just think, we are all individuals and we are talking about a person-centred approach. How do you measure that? You can’t measure pain. You can’t measure pleasure. It is all an individual thing, isn’t it? So why put in tick boxes and why pay lip-service to something? Practitioner

Some people, on the other hand, thought that inspection criteria could measure how person-centred a service was. As one manager said: When we are inspected by the Commission for Social Care Inspection, that is what they want to be looking at; that is their prime thing. They want to know what is revolving round that 191

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young person within that service. The quality of the service that young person receives is not going to be the same for the other nine in the service where I work. We have all got to be individual and that is the main thing that they look at. Manager

The emergence of improvements Many service workers wanted to stress that progress was being made, regardless of organisational problems that were also being identified. These included changes in service cultures that benefitted service users and supported them to achieve better outcomes. I think it is important to acknowledge that a lot of places, despite the fact that they are not yet as good as they should be, they are much better than they were and we should look at the progress that has been made. Manager It’s [person-centred planning] become an acceptable way of working in Middleshire. People are not as phased by this as they are elsewhere in [the country]. Manager

Case study Making targets work positively Existing measures and targets are not always at odds with positive practice and person-centred support. Workers in a day centre talked about how these had served to help it change focus and work more closely with other groups locally. The centre was committed to disabled people’s participation in mainstream society. Workers had begun to think about turning the day centre into a community centre used by both disabled and non-disabled people. They saw this as a way of promoting the inclusion of disabled people. They needed to demonstrate value for money to raise funds. Forming partnerships with other organisations who wanted to use the centre’s facilities helped to achieve this. One of the reasons we went along with it was [for] long term sustainability of the centre. You have to demonstrate that services are saving money and utilising facilities. Practitioner

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Organisational issues The centre began to change four years ago when the further education college IT [information technology] ‘learning station’ moved in. This opened up possibilities of changing the way the centre is used and opening it up to the community more. Now it is also used by the WEA [Workers’ Educational Association] and adult community support. Manager I believe that people realise that without that kind of connection, the sustainability of the building is threatened…. The changes are making the centre more significantly beneficial to the community than it ever has been. Manager Drawing a wider range of activities into the centre brought real gains. Basing a Sure Start children’s centre in some unused rooms, not only meant that these could be refitted, but other improvements be made to the building, including refurbishing the centre’s reception area and equipping a sensory stimulation room. Centre users and staff felt that these developments would both help sustain the centre’s long-term existence and overcome the barriers between disabled people and other local people.

CASE STUDY ENDS

A person-centred approach to standards and targets While we encountered considerable questioning of existing approaches to setting standards and identifying targets, people were not denying the importance of collecting information and try to measure progress and results. Many felt unsure what the best way was of going about this. They doubted that the right information was being sought or obtained. All the services participating in our project recognised the need to collect information measuring the outcomes achieved by people using their services. However, many felt unsure of the best way to go about this task. They said it could be very difficult to capture the right information. Since person-centred support meant starting with each service user, people were concerned with the outcomes for individuals. They saw gains from moving away from current top-down, bureaucratic targets, towards ones set by service users. Thus the focus for information gathering would be what service users themselves had to say. Their views, rather than organisational issues, would need to be prioritised, since a truly person-centred service would be based on the outcomes 193

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desired by each service user. Only such an individualised approach would show how person-centred a service actually was, adaptable and flexible to their different needs. It would be quite nice to have a formal way of doing that – maybe a questionnaire when people are leaving the service. Manager One of the things that I feel we can improve is to promote personcentred planning and see how people are achieving good outcomes because that’s their goals, but not the government’s goal, or the actual management’s goal and the only people who should be having good outcomes, is the client. Not known

One practitioner talked about a simple, but effective way that her service had made improvements, by undertaking a review involving their service users. By gaining an insight into service users’ perspectives, the service was able to make some straightforward improvements. We went out to do a review of the adaptations guidance. We picked out some clients and went to see them and asked them some questions about their showers. ‘Was it what you expected?’ ... devised all these questions and used it as our own sort of research to feed the guidance for the future. I don’t think there’s enough of that done. We learnt quite a lot. One of the things we picked up on was people didn’t know what to expect. We should have photos taken of what works that we could show to people and lots of other little things like that, to improve best practice. But we don’t do enough of that. Practitioner

The manager of an outreach service focusing on preventive work, explained that it wasn’t necessarily clear what effects it actually had. It is difficult to know whether an outcome results from work done by [the service] or other variables in the local area, like a supermarket opening. We think less people come to the [centre] because of the work of [the outreach service], meaning that they are doing community-based activity instead. Manager

He was worried that the service was vulnerable to any cut-backs planned by its funder, the local authority, especially if it could not show clear results.

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The danger is they [an outreach service] are seen to become so different, with eligibility tightening, that it is seen as a luxury rather than a necessity. Manager

The challenge was to find a way of showing the value of the service in a way that satisfied the funders, without compromising the service’s work. How to achieve a win/win for service users and staff and accountants and professionals? Manager

Establishing the evidence The service wanted to evidence the progress made by its users over a period of time to demonstrate how it had helped improve people’s lives in a range of ways. We have come to the conclusion that we need to capture this ourselves. We tried linking [others] who could do it in a more formal way, but they don’t seem to have the interest. [We want to measure] the progressiveness. We start people on the road and six months or a year later, we’re finding that they have done great things. Manager

Like some other services, they were convinced of the good work they did and had considerable anecdotal evidence to support this. They gave the example of a disabled man who was referred to the service when he was depressed and isolated. He had become involved in a local disabled people’s group through his contact with them. Building on their support, he gained the confidence to take adult education courses. He played a key part in setting up a successful support group and was now setting up another group. He has gone from being a service user in difficulty, to being an active volunteer, supporting the service’s work. He told one manager: You, the department, have actually saved my life. I think I would be dead now. My GP says I would be dead now. This has given me a reason to get up in the mornings. Service user

What the service lacked was any reliable method of accumulating such information. They gathered data on the number of people they worked with and the amount of input they had, but this stopped short of detailing what their service users had achieved. 195

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The focus has been on outputs, not outcomes. Manager We are terrible at noting things. That’s why it’s good that you are involved. It’s partly to do with resources, partly the way we have been structured in the past. We need to do it for the future. Manager

To overcome this, that project made use of a tool, based on asking service users a series of questions when they first had contact with the service and then repeating these at regular intervals and milestones in their relationship with the service. Questions addressed people’s feelings about themselves as well as their involvement in social activities, volunteering and work, offering a more rounded picture of developments (SOUL Project, 2006). A supported employment project involved in the person-centred planning network in Middleshire had recently started using a similar process for measuring the outcomes of their service. During our project, New Chance implemented a similar scheme based on asking its service users to complete a questionnaire when they start using the service and then at regular intervals. One practitioner working with people with dementia spoke about the difficulties of getting feedback from that user group. How do you measure successful outcomes [working with people with dementia]? You need a ‘happiness meter’, because it is hard to measure success. You can see the happiness, but how can that be measured? Practitioner

This raises broader issues about accessing the views and perspectives of groups where additional communication and other access needs must be met. Already, however, methods and experience are developing to do this, for example, in this case, through ‘dementia care mapping’ which traces the activity and behaviour of service users with dementia (Kitwood and Bredin, 1992). Some participants felt it was also possible to make the financial case for focusing on preventive services and person-centred outcomes by showing the gains, compared with traditional approaches. The thing is you can show the benefits. I mean the benefits may seem obvious, but you can show that long term this service will be more cost effective, more appropriate, you know. If you can show the benefits of being person-centred, people are more likely to immediately take it on board. Not known 196

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Since I’ve spoken to you, I’ve managed to evidence the fact that because some of the projects that I do are accessible to people who are eligible for a service, you can do a cost analysis on that – what the cost is for those people to be at the community-based places, as against what the cost would be if they were in a statutory service. You can easily equate how much it’s actually costing the person to access the services that I’ve set up against what it would cost if they were accessing statutory services and the money they’re saving because of that. Practitioner

The issue of ‘risk’ If the first issue participants in our project highlighted, following from the shift to managerialist/consumerist approaches in social care, was increased bureaucratisation, then the second was a preoccupation with ‘risk’ and its reduction. Of course, there is an overlap between the two, since the identification of risk and responses to it, are essentially bureaucratic processes. Risk has mainly been framed in terms of ‘health and safety’ regulation and restrictions. ‘Health and safety’ and public scepticism about it, have become clichés of modern western societies. This development tends to be seen as an extension of the ‘nanny state’, but in reality it has taken place during a period when the market sector massively expanded its role in the provision of public services. The rationale for concern with risk has also often been presented in market terms, relating to requirements for insurance and to address the possibility of legal challenge from people as ‘consumers’. Restrictions on people’s behaviour relating to risk have tended to be justified in terms of ‘safeguarding’ and the ‘management of risk’. Our project highlighted that pressures to be ‘risk-averse’ restricted the work of service providers and limited the lives and activities of service users. Both made it clear that this created barriers in the way of both person-centred support and independent living. The issue of risk has particular significance in social care because it intervenes in the most intimate aspects of people’s lives, has powers to restrict rights and works with groups identified as vulnerable and ‘risky’ and also at times when people can be expected to be vulnerable. Historically service users have tended to be heavily controlled in social care settings, particularly in its residential and institutional settings. Such controls have particularly operated in relation to groups seen as either less competent, or more deviant. The community care reforms which were implemented in the early 1990s reflected a wider aspiration to move away from the close control and regulation of service users 197

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in separate settings. In this they represent a challenge to traditional paternalistic attitudes and assumptions about disabled people and other service users. What service users and workers in our project highlighted, however, was the perpetuation of paternalism and control because of a preoccupation with negative risk in social care.

‘Health and safety’ Discussion about risk and attitudes and practices towards it tended to be framed in terms of ‘health and safety’. Many service users spoke about the impact that health and safety considerations had on their everyday lives and how they were a major barrier to person-centred support. It restricts me. It takes over. Service user I think health and safety has too much power. Service user Health and safety nonsense. Service user So there are restrictions on the workers in a way in what they can do and what they can’t do. Service user

Practitioners also frequently expressed their frustrations with health and safety rules and regulations and the way that they prevented them from supporting service users in the way they would like. It drives me mad. Practitioner Health and safety does cause problems. Practitioner Where will it end? Will it stop people doing anything outside the home? Practitioner

Ironically,‘health and safety’ a development which grew out of pressure to secure the rights and interests of both service users and practitioners, has become something which both find inhibiting and damaging.

Risk assessment The practice of conducting risk assessments on everyday activities has become commonplace and represents a major restriction and intrusion

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in the lives of service users. Jenny Morris associates this practice with negative assumptions in society about the abilities of disabled people. Concerns about risk to the welfare of a disabled person are closely tied up with assumptions about an individual’s capacity to make decisions. The tendency to see disabled people as uniquely vulnerable means that, even when professionals and service providers talk of ‘empowerment’ concerns about safety and/or liability can get in the way. (Morris, 2003, p 19) Forms are completed to assess the potential risks associated by undertaking specific activities. Risks for the service user and for practitioners and volunteers are considered. This could cover any activity, from those that most of us might see as potentially dangerous, such as going snowboarding or parachute jumping, to those that most people would regard as mundane and safe, such as going to a local shop or to the cinema. Assessments are intended to include how potential risks can be reduced, for example, by the use of specialist equipment, or the provision of one-to-one support. Both practitioners and service users felt that risk assessment was increasingly preventing service users from making choices and living independently. These barriers were seen as a factor across all services, but became particularly apparent in residential services. Every time, before they go out, there has to be one [risk assessment]. It certainly slows things up and there is not much spontaneity when you have to have a risk assessment before you can do anything. Practitioner If you want to go out, you think about health and safety. Service user You’re going to the supermarket to do your shopping and it’s something that everyone in the world does and you have to do a risk assessment on it! You have to do a risk assessment to get on a bus…. You could be doing more productive things! Practitioner

Risk assessments were not merely a bureaucratic intrusion into service users’ lives. Their findings could have a very real effect on what activities a service user could undertake. On occasions, where they indicated that an activity represented a high risk, service users might then be stopped from doing it. This could happen occasionally, or on a daily basis. 199

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A move to a [housing] complex like this means that every risk has to be assessed. So people are prevented from doing everyday things like leaving the building. Manager Me and my mate were supposed to go to [name of motor racing track] last summer. We booked tickets and got all excited. But then we couldn’t go, on the very last day, because of access and I was not happy and nor was my mate. We were told it was all fine: we wouldn’t need to do this, wouldn’t need to do that. We had to check the ground to see if it was level and it wasn’t. They rang up and they had to cancel it. Service user One of the people was 21 last week and he came back to the home very much the worse for wear and he passed out. We are now going to have to risk assess, if he goes out and drinks too much again, what the procedure will be. We only have two staff on at night and one of them had to sit with him, so it meant other things could not get done. If something else had happened the others could have been at risk. Whereas, if he had been in his own flat at home, no one would have known and he would have woken up with a bad head in the morning. Being here does have a slightly different context. As much as we want him to be able to do what 21 year olds do, when they come back into the building, there are different rules than if they were in their own home. He has promised not to do it again, but I am not sure I believe him! Manager

One manager explained what might happen in practice if a service user wanted to pursue an activity after a risk assessment indicated it presented an unacceptable risk. We always try and negotiate with the person and ultimately I think health and safety would say as long as you have tried to negotiate with the person and agree something with them, but they say ‘Sod you, I am going to do it anyway’, then we haven’t got a responsibility and we wouldn’t stop them doing it…. But it’s quite a long-winded process and by the time you have gone through it, they have lost the will to do whatever it was in the first place often. It doesn’t actually stop them doing it, but it does put a bureaucracy around it and is artificial. Manager

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The tyranny of ‘risk’ ‘Health and safety’ has become the framework through which issues of risk avoidance have been presented and come to be understood by people. During interviews and meetings, it was often apparent that both service users and practitioners lacked a clear understanding of either the specific legislation or the details of their organisation’s policies about health and safety. As Mike Titterton has stated: Workers and their managers sometimes hold distorted views of the legal implication of risk-taking, particularly over the issue of negligence. (Titterton, 2005, p 28) This resulted in risk assessment and health and safety issues being viewed with fear and distrust. They were seen as nebulous concepts that undermined the work of practitioners. They are blamed for preventing things, but not understood in detail by the stakeholders most directly affected. One practitioner had decided not to raise health and safety as a topic within their service: Otherwise you just get wound up in red tape. Practitioner

In a number of services, the need to conduct risk assessments had frustrated both practitioners and service users. Practitioners complained about the bureaucracy and the extra time taken to undertake them. In one residential service, practitioners were unclear about who conducted risk assessments and on what basis. For example, one practitioner thought a visit to the venue for a new activity was necessary to conduct a risk assessment, while another said that it was possible to telephone to find out the relevant information. This is a significant difference and given the stated shortage of staff time in the service, it could become a significant barrier to such activity taking place. I thought we had to risk assess anything – like if we want to go to Brighton, we have to go and assess it before we go. First practitioner [reply] You can ring up and ask if it is accessible. Is it on a hill? Are you going to be able to park nearby? You don’t have to go. You can phone or look on the internet. There are places you can get that information without going. Second practitioner

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One practitioner articulated the essential problem: [Risk assessment is] a good idea, but can get in the way of [service users] doing things. Practitioner

She instanced a fireworks evening put on by a local charity. When some service users said they wanted to attend, there had to be a risk assessment of the event. This was awkward as the organisers had not conducted their own (formal) assessment, so the service had to carry one out from scratch. Only specifically trained workers were allowed to do this. A few practitioners questioned the practical sense of undertaking risk assessments, since often they were not looked at by other workers. And then does anyone ever read them? No. Maybe just the Care Commission [CSCI] once a year will actually read them. Otherwise they just sit in a file and moulder. Practitioner

Negative effects If a preoccupation with risk sometimes seemed to serve little positive purpose, service users highlighted its negative consequences. ‘Health and safety’ emerges as having less to do with protecting service users, than with ‘watching the back’ of service agencies. Case study Snacking in residential social care Service users at one residential service complained of rules restricting their use of their kitchen. We’re not allowed to go in our fridge in our own home to get the milk out because our manager says it’s all to do with health and safety. I’m sure no one says that to you in your home, so why is it different here? Service user He said ‘health and safety’. He said ‘personal hygiene’, but we’re not going to touch it [milk] with our own hands. But then again the staff take the milk out. We have to ask them. It makes you feel like a child. It takes our independence away. Service user

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Organisational issues This represents a restriction on a very basic aspect of everyday life. When service users are routinely stopped from taking part in such an ordinary activity as making a cup of tea, questions of human rights arise. The manager of the residential service concerned, explained the pressures on the service. He said registration and inspection by the Commission for Social Care Inspection and the local environmental health service, placed an emphasis on risk. Such demands meant that the kitchen was run ‘like a hotel kitchen’. If residents were going in and out and we had an outbreak of salmonella, we would get into trouble ... but that’s a very jobs-worth response…. It’s not to say we don’t try very hard within the care home for a personalised service. But the actual model always works against you. Manager When asked about the ban on service users using the fridge in their kitchen, he said he would see “if we can be less risk averse”. Several months later service users were still not allowed to use the fridge. Another manager explained the trust’s reasoning behind the ban and the process they had gone through. There is an issue [here] around wheelchair users using the fridge. This is a health and safety risk caused by the contact of people’s hands with the wheels, which have contact with the ground. This has led the service to make an assessment that there is too great a risk to sanction manual wheelchair users using the fridge. The risk is that they may contaminate food with their hands. The service has been through a lengthy and detailed risk assessment for this activity and tried to think of ways around it. Manager A service user said when he had spoken with this manager, he had been given a different reason why service users were not allowed to use the fridge. He was told: That fridge shelves need to be a certain height for wheelchair users to use it. But I don’t think that should be an excuse. Service user He admitted that he used the fridge in defiance of the rule. I go in anyway, I say bollocks to it. It’s bloody silly. If you were in your own home, who would go in the damn fridge [for you]? If you lived on your own you would have to go in yourself. Service user

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Supporting people Neither staff nor managers had spoken to him about ignoring the rule. He was unapologetic about his actions. I still think because it’s our home we should have freedom with these things. We are actually paying for this and we should use these facilities. Service user Another manager in the home, however, challenged members of staff who insisted that service users put themselves at risk by making drinks by asking: Well, where is the proof that they are at risk? Manager She felt that solutions could be found to most situations, given a practical attitude and a preparedness to compromise. She was adamant that service users could make drinks in their kitchen at any time, including when the cook was at work. The cook sees it as a nuisance, but I say [to him] it’s their house, not your house. Manager We heard about a similar restriction operating in the kitchen of another residential service which also impacted on service users’ lives. If we are going out and we won’t be back for dinner, but we want it later, we’re not allowed to microwave it because of health and safety. To me that means we can’t go out unless we want our dinner first, or we don’t go out, which to me is a bit sad. Service user A year later this restriction had subtly changed, as one practitioner commented: We can put food aside, but we are not allowed to reheat it. They can reheat it themselves, if they can. If not, they can get another service user to, or if not, they’ve got the other choice of a sandwich, or they can get a takeaway. Practitioner Service users confirmed this. One said he was able to use the microwave and was happy to help other service users who couldn’t use it on their own. Another said she could operate the microwave, but not carry the food.

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Organisational issues It was hard carrying things, but they [staff] did that bit for me. Service user This arrangement meant service users could reheat food while ensuring that staff could not be blamed if a service user became ill as a result. This could be interpreted as an instance of a service working hard in a risk-averse environment to find a pragmatic solution to a particular problem. But it can also be seen as a disproportionate and bureaucratic response to a minor risk where in any other circumstances people would be able to take responsibility for themselves.

CASE STUDY ENDS Another manager of a residential home spoke of her pragmatic approach to risk. I try to take a common sense approach to it. You have to look at each resident individually. [I ask] How would I tackle things in my own life? If it’s good enough for me then it can work for them in most circumstances. Manager

She went on to give the example of a young man who lived at the home, who went out by himself and regularly did not return until after 8pm. She said some staff become anxious but that no intervention was needed. He always comes back and history shows that. Manager

In one residential home, service users going out, had to sign in and out in a large book in the reception area. Here we see starkly the meeting point of traditional institutionalising regimes and modern bureaucratic responses to perceived risk. It is difficult to think of another everyday experience of home that so differentiates residential service users from people living in their own accommodation. Significantly, none of the home’s residents questioned this measure. A manager explained about another restriction at the same service.

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Health and safety affects not only the staff and what they can do with people, but also what the [residents] can do while they are in the building. A current issue is that some [people] like to sleep with the door open, but because of the fire regulations, they aren’t allowed to do this, as it puts everyone else at risk. So there are little simple things you could do at home, that you can’t here. Manager

All of the ‘risks’ we have discussed here, relate to daily living and basic lifestyle. They were minor risks that other adults would probably not even consider as such. However, service users living in residential homes are frequently denied these choices.

Conflicting responsibilities While the personalisation agenda in the UK has been strongly advanced under the banner of increasing service users’ ‘choice and control’, this is not necessarily readily consistent with the ideological and practical pressures that underpin modern public policy, including social care. Thus managers of services have three potentially conflicting duties: • to uphold the health and safety of service users; • to protect the health and safety of their employees; • to enable service users to have greater choice and independence. Balancing and reconciling these duties can prove a difficult task. One manager explained how working for her large national organisation had led to pressure to prioritise some duties at the expense of others. The organisation, if there is any doubt, would err on the side of health and safety and compromise service user choice. They are very risk averse. They are rightly proud of the low level of accidents both for staff – low lifting injuries and things like that – and also from a service user perspective. It is very easy not to have accidents – if you fasten people in their wheelchairs and do all those things, you won’t have any accidents and people will have a pretty boring life. But if you are allowing people to take risks, then there will be accidents and I think the organisation is very, very conscious of health and safety and that is a burden. Manager

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A regional manager from the same organisation said: The service manager has to live, breathe and walk the empowerment philosophy and that can be very hard. I go round other establishments and I hear,‘Well I don’t think it is safe’. But it is adults making choices, doing what they want. I think we should celebrate that, not worry about it. Manager

This difference of opinion may reflect mixed policy messages received and then needing to be passed on by such organisations. As we saw in Chapter Two, it is not uncommon for services to adopt the language of person-centred support, while lacking the values and commitment that underpin it. It is important to draw a distinction between negative and positive risk. Not all risk is bad. Some risks have to be taken to achieve anything, especially to do new things. Some of the choices service users make, may lead to situations that involve risks to themselves, practitioners or others. How managers react to their potentially conflicting responsibilities seems crucial. Services need to be able to gauge risk proportionately and not lose focus of their aims. The challenge appears to be how to find a way to work through competing issues, with all parties involved, to find mutually acceptable solutions. This may require a complex process of negotiation that addresses the nature of the relationship between services, their practitioners and their service users, as well as issues such as capacity, adult protection and the employment rights of employees. We try to run the home in a particular way, but the [registration] requirements often hamstring us for how we have to do things. Manager

The tension for service users and workers The Department of Health, in its guidance from 2007, has stressed the need to be ‘risk-aware’, rather than risk averse when making decisions. Balance and proportionality are vital considerations in encouraging responsible decision-making. Reasonable risk is about striking a balance in empowering people who use services to make choices, ensuring that the person has all the information, tailored to their specific needs, in the appropriate form, to make their best decisions. (DH, 2007, p 11) 207

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Many service users and practitioners felt that services over-reacted to what they saw as negative risks. There was frustration at how small, or insignificant risks might be allowed adversely to affect the way the service worked, ultimately making it more difficult for service users to achieve their goals. Obviously you want to be protected as an employee and you don’t want anything to go wrong for yourself or your job, but sometimes I think I am a bit too protected to be able to do my job. Everything seems to be a risk to me, even if I don’t feel it is and then it is not letting me do what I need to do to help and really support this person in a way that they need…. We should be able to decide whether we want to take the risk, to a certain extent. Whether we have got to sign something to say I am willing to do this and I take the risk on my own back. And we maybe need to be a bit more aware of that, because I don’t feel I can do my job properly, because I am not allowed in case I hurt myself. Practitioner

Some practitioners spoke of the discriminatory treatment they felt service users experienced because of the effect of risk assessment on their lives. The level of restrictions on their personal lives was far beyond what would ordinarily be expected in society. I wouldn’t like to be told I can’t do that. I can take that risk if I choose to. Practitioner I can take risks if I choose to, but residents don’t get that choice. Practitioner We all take risks. If you risk assessed your skiing holiday you would never do it. Practitioner

Preoccupation with risk in social care services also seems to be strongly owed to traditional assumptions about the inadequacy and ‘vulnerability’ of service users. Services, which primarily see their role in terms of protecting service users and keeping them safe from harm, can find it hard to move to a rights-based approach that promotes choice and independence. One manager spoke about changes of government policy in this area, saying: How do you get to practitioners, who have been working with the most vulnerable and trying to minimise risk – and that is what it 208

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has been about? Now it’s turning that on its head and saying, ‘It’s about taking your own personal risks’ and professionals starting to get to grips with that. Manager

However, problems extended beyond old and new understandings of the role of services and the nature of service users. Significant tensions also emerged between practitioners and service users over issues of risk.

Practitioner concerns about risk Several practitioners expressed fears about their own position and career if an accident or injury happened to one of the people who used their service. They worried about negative public reaction and being blamed. They feared being held personally responsible for accidents, with consequences like disciplinary action, the loss of their job, or being taken to court. But it is knowing when to take that step back and being confident they are making the right decision, because some of the decisions will be the risk stuff and that is when it gets hairy for a worker. Because you don’t want to end up splashed across the newspapers, ‘This social worker neglected this older person and they have been dead on the floor for a week.’ You have got that at the back of your mind when you go in. Practitioner Some social workers say ‘I’m damned if I do and damned if I don’t’ So in order to protect themselves, there is the restriction of people. Manager

Some practitioners admitted that these fears had led them to work in self-protective ways. They tried to minimise the risk to themselves as workers and avoid any actions that could have negative consequences. You spend so much time just making sure you are covering your back. The things we have to do when we issue a bed rail: a six piece risk assessment, then review it every six months – and you just think, ‘This is crazy.’ Practitioner I think that often the restraints are about covering our backs, it feels like [that], so therefore it stops us sometimes delivering or enabling us to be very person-centred. Practitioner

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One practitioner acknowledged that service users were willing to take risks but that practitioners might try to stop them to avoid the potentially negative consequences for themselves. Some people [service users], they undoubtedly want to take that risk. They know what they are doing. They want to be free to do as they like. But you’re saying, ‘No I can’t do that. I’m going to get in trouble if you do that, because I haven’t protected you enough.’ Practitioner

One practitioner also felt that the risk of complaints increased when services did not have strong relationships with individual service users. The restriction of such relationships in social care is an increasing concern and as we saw in Chapter Two, they are recognised as one of the defining features of person-centred support. It’s linked back to relationships. We are scared of people complaining and suing. But people complain and sue because they don’t have a relationship with us. Practitioner

This issue emerged with particular sharpness in residential and nursing homes where practitioners were trying to uphold patients’ preferences about end of life care. They could run the risk of being suspected of a crime, if they did not make determined efforts to save a service user’s life, irrespective of that person’s previously stated wishes. That is happening more and more regularly since Harold Shipman [the doctor who mass murdered patients]. I will tell you one instance of a woman who had an aortic aneurism and it popped. She must have gone about five minutes before they went in to check her, so they dialled 999 and got the ambulance out. And the police came because it was unexpected and one little comment by one of the two young paramedics who came, said, ‘It doesn’t look like they made much attempt at resuscitation.’ They sealed the room off with crime scene tape. They took forensic evidence. They interviewed everyone on staff at the time. And this woman had already said she didn’t want resuscitating and having found her having gone, they didn’t know how long she had gone. And that was a really, really difficult situation, really difficult. We were all interviewed. I felt like a criminal. Practitioner

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Practitioners also expressed doubts about getting the support of their employers if things went wrong. As one worker, in a local authority adult services department, said: People do sue and…. It’s my livelihood and I’m not sure how far the department would support us if we get struck off. Practitioner

Service user concerns Some service users were sensitive to this defensive approach to practice on the part of social care workers. They felt that some practitioners and managers used ‘health and safety’ as an excuse. They thought that sometimes they had other reasons for not wanting a service user to pursue a particular course of action and weren’t being honest about the real reason. They felt this undermined the relationship between service user and practitioner. I know it’s to protect people, but sometimes there is too much reliance on stopping doing things, just because they come up with an excuse through the health and safety argument. It did upset me … because every now and again, they kept coming up with different things. It got a bit crazy. I got a bit frustrated with it. Service user They keep coming out with new health and safety things. I know it’s because the law keeps changing, but some are a bit made up really. Service user

This phenomenon of ‘blaming’ health and safety was acknowledged by Lord Hunt when he was health minister with responsibility for health and safety. He talked about the practice. I suspect this is a growing phenomenon. There are instances where organisations seek to blame health and safety when they make unpopular decisions for other – often financial – reasons. I would say that the threatened closure of recreation facilities, or the withdrawal of hanging baskets, are prime examples. Say it’s down to health and safety and people will roll their eyes and leave you alone – a sure-fire solution for every tough announcement. (Hunt, 2005, p 3)

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Supporting independent living Many practitioners drew attention to a central contradiction in modern social care. They asked how were they to support service users to develop independent living skills in an environment that was risk averse? They repeatedly made the point that people learn through experience, by trying things out for themselves. They said that learning practical skills inherently involves some level of risk. Taking such risks is the only way for people to develop increased confidence and new skills. This was a subject of concern across all the services we worked with and reflected the conflicting messages received and the pressures that practitioners and managers were under. They had a lot to say about it. I think you have to be able to take down the protection and allow people to make mistakes. I am one of those people that have to put their finger in the fire to know that it is hot. I think going through the experiences is where real learning takes place and it is painful to watch. I think [for] anybody who cares for anybody, it is actually a painful process to watch and try to be quiet and just be there. Maybe to pick up the pieces, sometimes, is, maybe what we have to do. Practitioner I remember a manager saying to me once [laughs], probably about three years ago, ‘It’s all very well and good this person-centred stuff, but nobody gives a toss about health and safety any more.’ I remember her saying that! You know, and that’s how she saw it – either – or. She saw it as, it’s all very well letting people take risks, but I’ve got to keep people safe and that huge amount of fear and trepidation about letting go. Manager … You know, to let go, to really allow someone to fall down, to fail maybe, or not to fail, but to try and learn, but you know, it is really hard to watch someone and I find that is my most difficult barrier – my own judgements and my own standards. Practitioner You need to let people take risks, you know, so much of it is about risk assessments and allowing people to have a personal responsibility for decisions they make, rather than wanting to be controlling and to limit what people do. People should have a right to say how they want to end their life, you know, a right to all

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sorts of things in their life, rather than being told, ‘This is available because you fit these criteria.’ Manager Well, he has the right to try, doesn’t he? It’s the risk that we all take and some people make a mess of it all anyway, don’t they? Practitioner And even though as practitioners around them, you can be, ‘Oh I don’t know if you can cope with that,’ you got to let them do that, haven’t you? Practitioner

Some managers spoke about the challenge for services, to move from avoiding risk, to supporting people to manage their own risks. This approach is essential if service users are to be helped to develop independent living skills. It is the essence of a person-centred approach to supporting service users. Allowing people to take risks, and live risky lives. Manager People need to get much wiser about working with risk and much better at joint working about sharing those risks, because the risk is for the client but it’s about sharing the responsibility that sits at the back of it…. At the day centre they can take people who are seen to be presenting risk and let them express themselves. This can reduce stress and anger for them, so therefore the behaviour becomes less challenging. Manager

Case study Cooking As we saw earlier in this chapter, cooking and eating can be a key site for the working through of issues of risk in social care services. This is often in the guise of a ‘health and safety’ issue, particularly in the potentially most restrictive services, residential care. This has a particular significance, given that learning to cook may be an important element of acquiring independent living skills. In a number of cases little attention seemed to have been paid to this by service providers.

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Supporting people We can’t light the cooker on our own. It’s an industrial cooker, not a home cooker. Not like a cooker from a shop, like you’d have if you moved. Service user This place was for trying to build up our independent living skills, but not after three o’clock! I want to do that. It’s silly isn’t it? In your house, you can cook when you want. Why can’t we when we have the facilities? Service user

Too many cooks? Some residential homes employed a cook. Restrictions about when residents could use the kitchen then appeared to be dictated by the cook. Services sometimes seemed to be oblivious to the cook’s potential role in supporting independent living, or indeed of their becoming a barrier to it. [Residents help in the kitchen] so long as not too many. It gets a bit over … well, under the cook’s feet really. He likes to be in there on his own, but he’s got to be seen to be helping them as well. Practitioner Practitioners at the home said that residents using the kitchen at the same time as the cook could be dangerous. Some residents told us that they enjoyed doing cookery at college and had learnt to cook a range of foods. However, if they wanted something that was not on the home’s menu, they had to ask the cook to prepare it for them! At weekends, when the cook was not on duty, residents enjoyed being able to do more cooking for themselves.

CASE STUDY ENDS

Summary This chapter focuses on the barriers to person-centred support created by organisational issues. Two related problems are particularly highlighted by service users and providers. These are increasing bureaucratisation and an emphasis on negative risk, linked with moves to managerialist/consumerism in social care and other public policy. Practitioners highlight the increasing restrictions imposed on them by tightening administrative controls. Preoccupation with bureaucratic targets and other measures often conflict with the implementation of person-centred support and 214

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preventive approaches. Measures employed are frequently inconsistent with moves to more independent living. Some services and practitioners have sought to develop ‘softer’ more sensitive measures consistent with independent living. Case studies explore how bureaucratisation restricts practitioners’ flexibility in working with service users and ways in which they have tried to make targets more person-centred. Services see it as essential to strengthen the evidence base to support more person-centred ways of working and stress the value of systematically seeking service user views to achieve this. The second and related organisational barrier highlighted by service users and providers is a preoccupation with negative risk framed in terms of ‘health and safety’. Service users stress how it limits their lives; practitioners how it restricts what they can do. Risk assessment intrudes into the lives and activities of service users. Resting on assumptions of their vulnerability and the need to protect and control such risk averseness, rather than risk awareness, stifles person-centred support and is antagonistic to values of independent living. It is particularly evident in residential services. A case study focusing on eating and cooking details this. The chapter examines services’ conflicting roles and responsibilities in relation to risk and how this undermines relationships between practitioners and service users. Managers and practitioners discuss ways in which the focus can be kept on independent living and person-centred support. References Butcher, B. and Marsden, L. (2004) Measuring soft outcomes: A review of the literature, Norwich:The Research Centre, City College Norwich. Clarke, J., Gewirtz, S., Hughes, G. and Humphrey, J. (2001) ‘Guarding the public interest? Auditing public services’, in J. Clarke,S. Gewirtz and E. McLaughlin (eds) New managerialism – new welfare, Buckingham: Open University Press. DH (Department of Health) (2007) Independence, choice and risk:A guide to best practice in supported decision making, London: DH. Dustin, D. (2007) The McDonaldization of social work,Aldershot:Ashgate. HM Government (2004) The Children’s Act (2004), London: The Stationery Office. Hunt, Lord (2005) ‘Health and safety: sensible management or bureaucratic straitjacket?’, Speech cited in Occupational Hygiene Newsletter, British Occupational Hygiene Society, vol 18, no 3, p 3. Kitwood,T. and Bredin, K. (1992) ‘A new approach to the evaluation of dementia care’, Journal of Advances in Health and Nursing Care, vol 1, no 5, pp 41-60. 215

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Miller, S. (1999) ‘The development of social policy’, in J. Baldock, N. Manning, S. Miller and S.Vickerstaff (eds) Social policy, Oxford: Oxford University Press. Morris, J. (2003) ‘Barriers to independent living: a scoping review for the Disability Rights Commission’, Unpublished (available at www. leeds.ac.uk/disability-studies). Ritzer, G. (2004) The McDonaldization of society (revised new century edn), Thousand Oaks, CA: Pine Forge Press. Social Work Task Force (2009) Building a safe, confident future: The final report of the Social Work Task Force, November, London: Department for Children, Schools and Families. SOUL Project (2006) Soft Outcomes Universal Learning Project, Norwich: The Research Centre, Norwich City College. Titterton, M. (2005) Risk and risk taking in health and social welfare, London: Jessica Kingsley Publishers. Walsh, K. (1995) Public services and market mechanisms: Competition, contracting, and the new public management, Basingstoke: Macmillan.

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Social care practice By far the greatest number … described the good things about their social workers in terms of their relationship with them. ‘I can talk to her/him,’‘there when I need him/her,’‘listens,’‘easy to talk to/ discuss problems with,’ ‘explains things to me.’ (Harding and Beresford, 1996, pp 7-8) Standard Eight: Practice

Services should support a positive and ongoing relationship between practitioners and service users as key to person-centred support. Service users identify this as the cornerstone of good practice. Particular attention should be paid to building and maintaining such relationships with individuals and groups facing particular barriers, exclusions and discrimination. Practice should be based on a barriers and social model approach.

Introduction The focus of this chapter is the practice of people who work face to face with service users. Such practice is at the heart of social care. It is where the aims and ideologies of agencies and policymakers intersect with the lives, rights, needs and desires of service users. Practice describes the role of social care workers in relation to service users – how they work with them. Yet despite the importance of such practice and such practitioners, neither seems to have been central in discussions and developments relating to social care. The repeated message from service users is how important good practitioners can be, but how damaging poor practice is and how unreliable the quality of practice tends to be in current social care (Beresford et al, 2005; Branfield et al, 2005). Issues relating to practice are spread throughout this book, because they are so key to any discussion of social care. In Chapter Four, we looked in detail at workforce issues, where constraints operating on the quality and nature of practice relating to lack of training and support 217

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emerged. However, as we have also seen, problems of funding and bureaucratisation and institutionalising regimes, also create barriers in the way of person-centred practice. We know that the goal of person-centred support is to work in a way which focuses on the rights, wants and needs of individuals, taking its cue from them. It seeks to support them to achieve what they want from their lives, rather than fitting them into a narrow range of pre-set services. The question is how far does current practice match this goal and how far must it travel to achieve it? Social work, the professional wing of social care, has always stressed that its goals are to advance people’s autonomy and self-determination. Social care practice has always crossed over traditional distinctions between personal and psychological issues and their broader social relations, addressing both and recognising the importance of the interrelations between the two. But the reality that emerges from talking to people on the ground is a system that has a long way to travel to be consistent with such aims and values. Here we learn more about the realities of present social care practice and some of the attitudes and values that seem still to be informing it, as well as hearing what service users see as especially important for developing practice that is person-centred. It is important to be clear that the practice we are discussing in this chapter and book, is not only professional practice, but also the practice of the much larger and broader social care workforce, including a majority of unqualified and often untrained staff. We should stress the extraordinary levels of commitment and enthusiasm we frequently encountered among such staff. Our project reinforced the broader picture. Social care workers are often low paid and from disadvantaged groups. The workforce we met was predominantly made up of women, and people from black and minority ethnic communities were overrepresented in it. A lesson to be learned from this project is that practice cannot be understood in isolation. Its strengths and quality are not only reliant on the commitment of workers, which was often high. It is also closely connected with existing structures, understandings and attitudes in social care, which are often still moving in a different direction to person-centred support. There has been a strong tendency in discussions about personalisation and self-directed support to present practitioners as a key barrier to change and person-centred working. A much more complex picture emerges here, which significantly often suggests that service workers can be the closest ally of service users, with many points of agreement between them. Their commitment to person-centred support is not 218

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only crucial, but under different conditions might much better be supported and encouraged. As the national Commission on Personalisation established by Hampshire County Council concluded, there will be need for change: Social workers and other staff currently working in care management will need to develop their role and ways of working to better reflect the importance of co-production with the person needing care, their friends, family and carers. Such a model moves away from managing care for people, to working with them. It is recognised that a positive workforce commitment to such a model is essential for the success of personalisation. From this there is a clear need to ensure that staff are given the opportunity for support and training to develop the necessary skills and knowledge and are included actively in the process of transformation and equipped to work in the new ways that will be required of them. Regarding the workforce as a whole, there is a fundamental need to develop and retain enough people with the right skills, social understandings and grasp of independent living needed to deliver personalisation. There is no inevitability about the roles required in care services. (Hampshire County Council, 2008, p 72) We have a remarkably clear picture of what service users want and value from social care practice. There has been a significant consistency in the findings obtained from the research and consultations with service users that have been undertaken in recent times, both nationally and internationally. Perhaps not surprisingly, what service users say generally, is closely consistent with what service users and others had to say to us about their understanding of ‘person-centred support’. They highlight a range of qualities and skills that they associate with good practice and good practitioners. This holds across different service user groups and different social care services. The first study which explored this issue, the original Standards We Expect project in 1996, highlighted these issues (Harding and Beresford, 1996). In that study, the qualities that service users highlighted that they wanted from workers included respect, credibility, courtesy and empathy, commitment to confidentiality and privacy, honesty, reliability and continuity, as well as a ‘sense of judgement about risk’ and practical skills (Harding and Beresford, 1996, p 24). Studies, which have asked service users about other types of services and what they want from their social workers, have come up with 219

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remarkably consistent findings and it is worth detailing some of these to show this. Children interviewed for research into the working of the 1989 Children Act (DH, 2001), were clear what the qualities of a social worker or other professional were what enabled them to discuss their feelings and take an active part in effective decision-making. They identified:

• • • • •

Reliability; Practical help; The ability to give support; Time to listen and respond; Seeing children’s lives in the round, not just the problems. (DH, 2001, p 93)

Their findings about what parents want from services have a very familiar ring as well and here we offer just two as examples. • Parents value services which offer a combination of practical and emotional help; • Parents value social workers who are approachable, honest, understanding, reliable and helpful, and who have time to listen. (DH, 2001, p 81) Peer research carried out in the Netherlands by homeless adolescents found that: Communication with social workers is not as it should be.They are not listened to; too many social workers remain behind their desks and there is too little personal involvement. (De Winter and Noom, 2003 p 326) Asked in the same study what an ideal social worker would be, they said: Someone who doesn’t regard you as a client, but treats you as an ordinary human being and trusts you. (De Winter and Noom, 2003, p 336) A study into the views of young people about their experience of educational social work concluded that: The most important finding … was the central importance of their relationship with their educational social worker and the 220

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associated practical help and guidance, which was so highly valued. (Pritchard et al, 1998, p 930) The importance of relationships between service users and professionals was also a key finding of a project working with young homeless people. Social workers are dead nosey and want to know everything about you right away. Here they let you say what you want in your own time, they let you get comfortable and talk in your own time. (Fleming, 1999, p 53) Two major national consultations with adult social care service users, carried out in 2005 towards the preparation of the government’s White Paper on health and social care (DH, 2006), both highlighted the same range of human qualities in social care workers as was emphasised by service users in our project (Beresford et al, 2005; Branfield et al, 2005). As Parton says: The central message that comes across time and time again is that it is not the particular model or technique used by the social workers but the quality and value of the experience. (Parton, 2003, p 3) This was also a constant theme in the comments of service users involved in a study which focused on their experience of and views about specialist palliative care social work. They repeatedly highlighted what they seemed to see as positive human qualities which they associated with such social work. These included: • • • • • • •

warmth empathy respect listening treating with equality reliability being non-judgemental (Beresford et al, 2007)

These qualities or characteristics are also those closely associated with person-centred support, based on a relationship between service user and worker.

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Avoiding assumptions Many service users in our project spoke about other people, particularly social care practitioners, making assumptions about them and what they needed. They said that this could make it hard for them to get the support they needed to live as they wanted. Service users who didn’t have anyone to advocate for them, who had difficulties speaking for themselves, or who had communication impairments, were particularly badly affected. The damaging effects of practitioners’ preconceptions extended from simple, everyday aspects of service users’ lives, to their major life decisions. Sometimes you talk to the worker and they start talking before you even stop talking. Service user Your worker can’t tell you what you need. You know what you need. Service user You sort of say to them ‘Oh I want a shower and wet room,’ and they write it all down and then come and put a bath in and you get a bath seat and you go, ‘Yeah, thanks, but a bath’s totally useless.’ Service user They also had the cheek to say, ‘You can move back in to mum and dad’s,’ but I said, ‘That is not where I want to be.’ It’s treading on each other’s toes and it’s not my own house. Service user

In this, practitioners often mirror wider social attitudes. A woman with learning difficulties explained how many people were surprised to learn that she was married, because they assumed disabled people would not be. The fiercest opposition to her plans came from those closest to her, her family. I live with my husband. People are amazed because sometimes people think people who are disabled should not get married. We have friends who go with people and the relationships don’t last and we can’t understand why. Some folk think it’s the people that work with them, the supporters, and it’s quite upsetting to see it happen. Some of them are quite angry and jealous, because we got married, and [they say], ‘Why did you get married?’ I say ‘Because we did and that’s it.’ [My husband’s] family is more for it. They are more with it. I had to get married after my mum and dad had 222

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gone [died]. My sisters got married, but [mum and dad said] ‘No X, you’re disabled, you’re not to get married.’ That’s very hurtful for me. Service user

A disempowering culture Many service users feel disempowered by services. Social care practice is constrained by the rigidity of the services it is located in. Service users talked about being bossed about by managers and practitioners and not being respected. It can be hard to get support for what you want to do, not what they want you to do. Service user Sometimes they respect you, sometimes they don’t. Service user But you don’t have choice though. You can be forced to be a client in places – even though, you know – you’re told it would be good for you to go there – It’s not your choice to go there, so you’re not really a client. Service user Yes, I would like to be consulted more, because you are too poorly to make a decision. Well you’re not always as poorly as all that. Your brain is still ticking over. I have still got opinions on things. Why not? Just because you are old, doesn’t mean you are completely gaga. Service user

Many practitioners acknowledged that this problem existed. Some talked about how they tried to overcome it in their own practice. Everyone’s got an opinion of what’s best for the person – without asking the person. If the person isn’t having a say in what’s happening, then it’s fundamentally flawed from the start. Here it is driven by the person. It’s shared ownership and it moves forward at the speed that the person wants to move forward. Practitioner I went in and just said to this lady, ‘Right, what colour would you like to paint this?’ and her face just lit up. I’d given her a choice. She could have a choice. She could choose her own colour. And I think staff don’t think about things like. ‘What colour dress do you want to wear?’ ‘Oh, you have this back on.’ And it is so simple really, you know – and yet it means so much. Practitioner 223

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One practitioner echoed the view that offering people choices could offer a solution. As the client sees it, it’s about them and not what we were telling them to do. They get engaged more. Practitioner

Another stressed how many people, in every area of service users’ lives, made assumptions which limited what they could do (see also Chapter Eleven): Yes, even though you are thinking that way, the service you are trying to provide for someone, the attitudes and the assumptions people make about someone with [an impairment, that] they can’t do things, even though you are advocating on their behalf that this is what they want. It is the wider society isn’t it? Practitioner

Review meetings For many service users, review meetings epitomised their unequal relationships with practitioners. They spoke about the difficulties they faced at such meetings because of the imbalance in power between them and workers. They talked of practitioners making decisions for them and not helping them make their own decisions. People with learning difficulties, in particular, told us about negative experiences they had had at such meetings to review their support services. I don’t think reviews are very helpful. It’s just people talking about you. They sort of decide and make decisions for you and at the end of the day, you feel out-voted and your voice doesn’t get heard. Service user You would get review meetings with everyone talking and it’s like the [service] user is not even there. It still goes on. Practitioner My CLDT [community learning disability team] nurse can be too controlling sometimes. He wanted to have a review. I told him I didn’t want one. I don’t like them. They talk to other people as though you aren’t there. They pass the information on to someone else in their team. Service user More powerful people have their say instead of the individual themselves … instead of me talking about my life, somebody, a 224

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manager, or someone who got invited to a meeting about me, they have more of a say than me. Service user

One size fits all? Many participants emphasised the need for flexibility. However, both service users’ and practitioners’ experiences of services highlight that they are frequently inflexible. Both service users and practitioners are liable to be sucked into such a system. Ten o’clock at night, Mrs Bloggs says, ‘The bulb has gone in the kitchen. I can’t see to make a cup of tea,’ and you go out and change the bulb. Go and fix it, if somebody wants something, you do it.… The new manager does nothing. He won’t come into the house, because he might injure himself. He is not allowed to stand on a chair and change the bulb. He can’t pick big boxes up for Mrs Smith because he might fall over and rupture himself, and the whole thing I think is falling apart. They are not helping anybody anymore. Service user Is this the flexibility you are talking about? There are set rules for these managers, caretakers, whatever they call them and they won’t step beyond those rules. They must be flexible, underline the ‘flexible’, that is important. I can give you an example of where it goes wrong. The day centre closes at 4.35 – whatever it is. At 5 o’clock, one of them old ladies has lost her pound coin in the washing machine. It is all her washing for the week and she is standing there. He wouldn’t open the machine unless there is someone there to see him. He said he wouldn’t open the machine, and [that] she had to leave the washing there overnight. So, I opened the damn machine. I took her money out, put it back and got the washing machine going for her. That is the sort of flexibility we want and this poor old lady was going to wait until tomorrow for her washing. Service user In a care home you have a handover, you get given your jobs and you do your jobs. It’s like a conveyor belt. They all get taken to a dining room or whatever and that’s where they stay all day. Practitioner

A member of a carers’ group described his experience of inflexibility in a hospital. At a difficult and sensitive time in his wife’s life, he felt the 225

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health service was inflexible and not person-centred. Their experience at a nursing home, however, was much better. Yes, the hospital was terrible. I had a clash with one of the sisters and the doctor actually told me off. ‘Angela’ was in hospital about six weeks and she was on a drip and she was in a private room – which was OK – but then they decided to move her onto a ward. And then she was in another room and the sister on that decided that she would say when I could visit [my wife], even though the doctor stated she was dying. So I was delighted when they told me I could bring her back to the home, as [in the home] she died with dignity. Carer/relative

The importance of flexible practice Participants told us that practitioners should be supporting service users to follow their individual interests. It’s about being organic, that’s reacting to individuals. So that’s about being person-centred, listening to people and what they want and providing those services which cut into the finances, rather than providing what we’ve been dictated to provide, or what we think is right, or what would be a good idea, or ‘that would be nice wouldn’t it’. Just encouraging your staff to think like that, that’s what we’ve done. Practitioner It is very hands on, it is very client-led and we have a very flexible approach. So we will work one-to-one with a person and quite often you will have social workers or parents or carers saying,‘No, this is what we want’ for that person, and then that person saying, ‘Well I know that, but really I don’t want to do that.’ So what we try and do is give them the space to explore what they want to do. So we will try and make it as easy for them as possible so they can get the opportunity and experience. Not known That’s where social services are having to grow up and realise that people can’t be boxed into specific impairments any more. Service user/practitioner

One service user gave an example of helpful flexibility in her service.

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An example is I go to church on a Sunday and on a Sunday we have our dinner a bit earlier so that we have time to get ready and go to church. So that is something that has changed. Service user

A man with strong religious beliefs that meant he liked to do different things from the other service users at his residential home said: [Staff] go out of their way to help me to do what I want. I go to meetings three times a week and there are some things at the home I don’t take part in. Service user

Case study Responsive practice Managers and practitioners at a recently opened day centre for people with dementia explained how they tried to ensure that the service was flexible and responsive to service users. This process started when the centre was being developed and had carried on ever since. The centre was purpose-built, using techniques to help people feel calm and secure within the building. They explained how they put service users’ wishes at the centre of their approach. We want the centre to evolve from the people who are using it, rather than the other way around. It is going to take time for us to do that. Manager We invited the people who were transferring from another day centre and we generally put out invites in local areas and the dementia café and people living with dementia and their carers to come and sit and have tea and coffee with us and a chat about what facilities they would want. So what we did at the first meeting was sit and say, ‘OK we’ve got a blank script. If you could have anything within a day centre, what would it be? We’re not promising we can provide everything, but what we want to know is what would make it work for you? What is it you would want from the centre?’ Manager The staff who form the team actually went to work in another day centre, a council day centre and it was interesting because they found that hard, the rigid structure and actually didn’t get to know the individuals attending until they actually came here and had the opportunity to sit and say ‘What do you want to do?’ Manager 227

Supporting people We were very clear from the start that we weren’t going to put a structured plan together and people would come and join in with what we had planned. It would be very much more flexible to individual needs on different days and gearing staff up to stand back and to be flexible and to say, ‘We were going to do this, but now we’re going to do three small groups of different things,’ and actually responding to individuals on a day-to-day basis – which is very different to how day care provision has been. Manager As a result service users seemed to value the service offered by the centre. I can’t fault it. We are lucky to be here. Service user

CASE STUDY ENDS People highlighted the importance of an approach to practice which started with what service users wanted, not the requirements of services or service workers. It’s about fitting the services around people, rather than people into the services. Manager You don’t look at what’s there…. You don’t try to fit a square peg into a round hole. You actually do develop the project or whatever, that person wants around what they specifically are hoping to get, to improve the quality of their life…. The time has long passed when this team just thinks about existing resources. We have moved way beyond that. Practitioner I think that’s also about a blanket, you know, this is what we’re going to do with this group. Because for some people, volunteering is the right option. For some people going to work is the right option. For some people going to further education is the right option. Everyone, you know, even within one group – people [with] cerebral palsy – will need different options for different people, different solutions that should be looked at. Not known It’s not being so blinkered, [saying] ‘You’ve got to come to our organisation. We will come to you….’ When we do social things here, we don’t just do them for our tenants. We do them for the

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whole community…. We tell everybody, ‘Bring your family, bring your friends.’ Manager

A few people talked about the use of direct payments to offer flexibility and control over practice. We should be able to explore direct payments for day services, so people bring their own member of staff in. That would take away the pressure on existing staff. It’s under-used at the moment. That is a way of possibly enabling people to do just particular activities here. Although there are set [eligibility] criteria, it can depend on what district you live in and how willing they are to bend the rules and spend the money. Living in X you have a different level of service to Y. Practitioner It means that if during the week, you need to get up at half past seven to go into work, you employ someone to help you, support you to do that to get out during the week. But at the weekends, you might want to have a lie in because you have been out clubbing Friday night and you might want to not have anyone interfering and coming in until midday, maybe to support you if you need it. Service user

Another practitioner spoke of the benefits of new technology and ‘telecare’ in supporting people to live in their own homes. Assistive technology really can help people stay at home, where they want to be, like alarms for people with memory loss. They can promote some kind of independence. Or tablet carousels with alarms. There’s so many pieces of equipment now which can help. Practitioner

One practitioner said that some of the service users she works with did not see themselves as disabled or as ‘service users’. A person-centred approach to practice acknowledged and recognised them as individuals. I think we work that way instinctively. A lot of the people we work with don’t want to go near any projects, any groups. They’re interested in doing things for themselves, as a person in their own right. Part of our role is to listen to what the person is saying and act accordingly rather than trying to channel them into a box. Practitioner 229

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There were a range of constraints operating on practice. Those which were highlighted included the location of practice in traditional segregated services like day centres, the restrictive nature of service organisations and prevailing arrangements for domiciliary care.

Day centres Service users talked about the negatives of existing day centres. I just sat there for hours with my feet up. I said to my care manager, ‘I could do that at home.’ I thought I would get computers, or art or something a bit more spectacular than just sitting in a chair. Service user There’s more to life than centres. Service user

Some practitioners felt that many service users attended day centres to give their families a break, rather than because they particularly wanted to take part in any of the activities available. For others who needed personal assistance, it was their only option, since such assistance wasn’t available at local colleges or clubs they might have wanted to go to. I think we provide a good service up to a point for people, but it’s probably not the service they may always want and it’s not always available when they want it. Practitioner We try to be flexible within what we can offer. Some might prefer to attend on an occasional basis, but because of the transport, it’s a big problem. Some attend just because they can get the transport. Practitioner Lots of people don’t want to be with other disabled people. They want to be closer to home. Some people with MS [multiple sclerosis] don’t want anything to do with the MS Society. It’s not trying to fit them into a square hole, just because we’ve got a square hole. Practitioner Not many people do offer personal care, so [it’s this day centre or nothing]. Someone might enjoy going [somewhere else], but they wouldn’t offer personal care, so they can’t go. Practitioner

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Inflexible organisations A manager spoke about the pressure towards uniformity she experienced running a service that was part of a large, national organisation with standardised policies and procedures. It is a huge operation. There are three main offices and everything comes through email and you very rarely get to speak to somebody on the end of a phone. And it is all very regimented, so we have to focus. We have had to put all those things in and we have had timescales, so it is by this time you will do this and that and we really haven’t had time to turn around, none of us have. Manager

People expressed their frustration at the resulting lack of flexibility. I felt very angry. I could have managed mum. I am a trained nurse and I have [worked] in care, not with the elderly but with teenagers, all my working life. And I really felt I only wanted an extra pair of hands. Instead of that, how much more money has it cost them to help me fund mum in here [nursing home]? Which to me was ridiculous. That is how I saw it at the time. I was angry because it had been taken away from me. Carer/relative

Inflexibility of ‘home care’ or domiciliary agencies Participants gave many examples from personal experience of the inflexibility of ‘home care’ or domiciliary agencies. These included problems associated with: • • • •

The inflexible timing of visits The inflexibility of practice time Arbitrary restrictions on practice Poor quality practice

The inflexible timing of visits A common complaint from service users was that domiciliary care workers didn’t come at the times they were wanted. I was working full time and I was told the only slot they could fit me into in the morning was 10.30 and I have been getting to work at 7.30 in the morning, but I just couldn’t cope on my own any 231

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more. And they said, ‘Oh well, we can slot you in at 10.30. There is no other time available.’ Service user She needs care and she gets up at seven o’clock every day and she has been told to get up, not asked to get up when she wants and I think that is well out of order. You should tell the carers when you want your care and not the other way round. They are paid to do the job. At the end of day, it is their job to care for you. Carer/relative

The inflexibility of practice time Participants not only highlighted widely recognised problems of service users being allocated insufficient time for domiciliary care and then not even getting their full time allocation. They also emphasised the importance of flexibility in the time allowed. The manager of a service working with older people with dementia made this point because of the fluctuating nature of her service users’ impairments. This service provided extra care housing, but had to register as a domiciliary provider because there was no registration category for extra care. We need to have flexibility – especially when you are working with people living with dementia. It is no good having a domiciliary care package that says, ‘Go to Fred Bloggs and in 15 minutes, do a, b and c every morning,’ because that person may have managed to do it themselves that morning, but another morning take half an hour or an hour…. We are currently working with social services to actually move away from social workers providing us with a domiciliary care plan, to them actually supplying us with a summary of care needs, so that we can then provide the care plan with flexible care, so that we are working in a slightly different way. Manager

A service user with a physical impairment said she would prefer a more flexible approach to time from her service. We all wish we could tweak our own services to a degree. I have home care, but I could occasionally do with more. I have very good weeks and very bad weeks. It would be nice to say, ‘I don’t need services when I’m good and have them back when I’m bad,’ but you can’t do that. You have to keep it going all the time, otherwise you lose it. Service user 232

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Arbitrary restrictions on practice Many domiciliary care service users complained of the limited range of services available through domiciliary care. For example, workers were allowed to clean people’s bathrooms, but not to change a light bulb; get them up, but not help them with shopping. Participants thought that agencies’ policies were largely driven by their concerns about risk. Service users felt that this could result in important tasks being left undone. This raised real questions for service users about the risks they could face, for example, being left in darkness, or in accommodation that had not been cleaned. Moving and handling places further restrictions on people. Sometimes the ways that people choose to do things may not be allowed. This is because it may expose the worker or client to risk. Practitioner

Poor quality practice Service users reported problems that they had experienced with domiciliary care staff. Sometimes this was due to the staff themselves, sometimes to the organisation employing them. Some carers care more about getting home and they say it in front of you. Some are very good. Some just want to get home. Service user How useless [the worker] was, I don’t even want to go into it and he knows that as well. But the thing is, I have had no feedback from the person he works for, saying, ‘Well what do you want to do? Do you want to have a support worker? Do you want to change your support team?’ This has happened to me twice. This is the second time it has happened where I have had to get rid of my support worker. So now it is looking a bit like I am the stroppy one. Service user I have carers three times a day. They are good people, [but] the administration behind them sucks at times. Service user

The quality of relationships The original Standards We Expect report highlighted two issues key to good practice and the same two issues were highlighted by 233

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participants in our project as central to person-centred practice (Harding and Beresford, 1996). These are the quality of relationships and communication between service users and practitioners. There was widespread agreement among participants that the quality of relationships between service users and practitioners was crucial for establishing person-centred support. This confirms the findings of previous research into the quality of support. The value of the support to users was perceived to be dependent on the support worker’s ability to develop a positive relationship with them. This was the case regardless of the organisational and funding arrangements for service provision…. The attitude of the worker and the tone and quality of their relationship with the user seems to be crucial. (Douglas et al, 1998, p 54) Practitioners from a service that supported disabled people and people with learning difficulties to find employment described how their person-centred approach often meant starting their role by simply getting to know the service user, usually by meeting them for coffee or in a similar social situation. In this way, they could get to know the person and build up a relationship. Only when this had happened, did they begin to consider the right training and employment opportunities. Service users of the project described their experience of this process. You’ve got to get to know the job coach and he’s got to get to know you…. When you get into a job, they come into the job placement with you to help you find your feet and once you’ve been there so many months, they back down slowly so you can get used to it yourself…. They leave you and they just monitor you. For the first couple of months, they will stay with you, then they gradually take a step back when they see you are ready. They monitor you as much as they can and then they get the feedback from the employer. From that they can see what they can do for you. Service user We just talked and arranged to meet once a week and just go out for a coffee, just to get to know each other. We went to the cinema as part of getting to know each other. We started talking about me doing work experience at WH Smith after I expressed my interest in books and because I wanted to work somewhere a bit quiet, not like HMV. Service user

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Practitioners working in a range of services told the same story. [But it is a barrier] if you don’t get the chance to have that relationship with someone, to build up knowledge and a relationship. I was thinking about it and that is where the first barrier is, I think. Practitioner Each and every resident we know inside out, or you should know inside out, their likes, their dislikes and don’t forget they are all individuals and they have all got individual tastes, likes, dislikes, little habits. And we have got to get to know these and that is what we like to do, or are aiming to do. Practitioner Yes, I think quite often at night, you can get a really close relationship, especially if they are worried about something and you can go and sit and chat with them. And quite often they tell you a lot of things about what their fears are, for their family and how they are going to react and things like that. Sometimes they just like someone to sit with them for a while. And you can get a nice close relationship with the resident at night. Practitioner Building a relationship is the real foundation. And now a year and a half on, we are beginning to get a menu of what we offer people. This is what people have wanted and this is what we have found works. Manager

One manager saw the quality of relationship between practitioner and service user as so fundamental that she said: It has made me consider more the importance of relationshipcentred as much as person-centred…. If you don’t have a good working relationship, you don’t get the best out of it. Unless it’s relationship-centred the person-centred bit doesn’t work…. When you pull right back to the bones of it, it is often the relationship the staff have with an individual that makes a difference, that is the good quality stuff and that is really difficult to pin down. Manager

Service users valued the chance to meet and get to know service managers. These were different kinds of relationships to the ones they had with practitioners, but still important to many service users. Continuity and trust were seen as important in relationships with managers, as well as practitioners. 235

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We have a good manager here. I’ve been in so many places in my life without good managers, but there is here and so it works. The manager is responsive and he respects you. When I was in residential homes, I wouldn’t have been able to speak to managers. Service user [Name of new manager] comes to see us once in a while and discusses things in private. The previous manager didn’t have time for that. Service user

Despite the importance both service users and workers attach to relationships between them, the social care system often pulls in a different direction. This issue was most clearly articulated by an occupational therapist we spoke to. I feel that in my role as an OT [occupational therapist], in my training, a huge part of the role was about the relationship. I feel that has gone. They just want you to go in, provide equipment, get out. Review it, do what you to have to do to be safe and just get out. Not about the relationship and not everyone is at that stage. They need help to get to that stage. It can be hard work to empower people. We are not given that opportunity, to build up the relationship and build up trust. Practitioner

Case study Relationships towards end of life Our work in residential and nursing homes in Camchester highlighted three emerging issues relating to relationships with service users. First, nursing and residential homes had a particular problem in developing good relationships with some of their residents. This was because their residents were much closer to the end of life when they moved in, than they had been in the past. I think also the turnover is much greater, that is another important factor. We get people in who die a lot quicker. We used to have people in a nursing home who could be there three, four, five or six years. A lady died this year who had been there since it opened 10 years ago, but that doesn’t happen now. We get people and they are seriously 236

Social care practice ill. We had a lady, she was only here three weeks, went into hospital and she died. So you are not building that relationship. There is a huge turnover. Manager I think what we tend to be getting in nursing homes, it is a horrible thing to say, are the ones that the hospitals don’t want anymore and they are really at the end of their life. And we have had people come in, who have probably been with us for two weeks and we have even had less. We have had someone come in who has been two or three days and to be quite honest that person should never have left hospital. Practitioner Second, in residential and nursing homes in Camchester, efforts were being made to find out about and respect individual service user’s wishes regarding the end of their lives. One way this was achieved was to have a discussion with each service user about end of life care within 48 hours of admission to the home. Sometimes practitioners spoke to family members instead of the service user (this was only supposed to happen if the service user was too ill or confused to express their own wishes). This could involve practitioners in asking very personal questions of people they had not had a chance to form a relationship with. We do the basic care plan within 48 hours of them coming in. But things like end of life care, we have a specific page in the care plan for death and dying and so we tend to get to know them a little bit better and speak to the relatives and try to formulate something they are happy with. Practitioner It is very difficult when you don’t know them. It is easier when people have been here a little while and you have got to know them a little bit better. But I will ask the question and I will also feel the ground. If I am doing the general pre-assessment, I will probably leave that question until a little bit later on in the assessment, so at least you have got a little bit of a feel for how that person is feeling at the time. Practitioner Third, many service users we spoke to said they hadn’t talked to anyone from their residential or nursing home about end of life decision-making. Many participants said that homes did not promote an open discussion about death and dying. For many, it was ‘the elephant in the room’. In the context of

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CASE STUDY ENDS Continuity Continuity in relationships was something that service users particularly valued in services and crucial to maintaining trust. Many service users had experienced problems when there was a lack of continuity in service workers.

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We got to know the warden on site and then the next day, it’s someone else. There’s no understanding. We need one guy who is there regular, I think. Service user Common sense would say that … staff changing [is the cause of a lot of problems] and that comes down to the money at the end of the day. And a new person comes in and it takes time to get to know them. Service user

Both practitioners and families saw continuity as vital for relationships between service workers and users. Continuity led to better relationships. Lack of continuity created communication problems and weakened trust. People do become reliant on individual staff and when they leave, service users take a few steps back. Practitioner What dementia sufferers need is continuity. I mean I know all disabled people need that, but they need to hear the same voice and when they don’t get that, they become disorientated, they become insecure. Carer

The importance of continuity was frequently mentioned by people in relation to end of life care. The powers that be have to recognise that we all get to this point in our lives. There is a need for absolute continuity of care, familiarity that people’s cognitive awareness is diminishing rapidly and therefore it is a crucial issue as they get towards the end of their life. Carer I think it would be nice if there was one carer. I mean you build up a relationship with one or two carers, a stronger relationship than with some of the others, as it was in mum’s case. And I think it would be nice, if those particular one or two were able to be, or felt they could, do the final bits. I think that would be nice. Carer/relative

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Empowering relationships If building relationships with service users helped practitioners to work better with them, it was also key to supporting the empowerment of service users. For myself, it’s about building up a relationship with a client and noticing where there are difficulties and noticing where there are real gifts and hopefully making, enabling, a client to be aware of those qualities in themselves. Practitioner It is a process of really spending time with people and really getting a feel, because quite often the people that I work with don’t know how to make choices and when faced with a choice, it is quite bewildering to actually suddenly have to make a decision. It can be a long, long process. Not known Building a relationship where people feel as though their selfesteem and their self-awareness is raised to actually think about what they want, because maybe that is something that they have never really been asked. Not known The staff are fantastic. It’s a joy to come here. We all look forward to it. You know you are safe. I’ve never stopped learning. I hated school, but at 56, I started learning again. Service user

Emotional attachment Forming relationship not only raised issues for service users, but can also for practitioners. Some practitioners spoke about the emotional element of their relationships with service users, particularly at the time of death. This was clearly a difficult part of the job, particularly for the younger, less experienced practitioners we spoke to. Participants spoke about the need to make sure relationships were professional, while acknowledging that emotional attachments grow when working with service users over a long period of time. It can be stressful, very stressful. We have had a couple of people who have passed on or gone into nursing care, which is upsetting. It’s hard to let go. You do get attached. It’s stressful that way, losing people. And when you are trying to get through to someone and they are putting their barriers up…. You try and build a relationship

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with everyone, but they might not want to build a relationship with you. It’s difficult. Practitioner I wasn’t very professional, well, I didn’t think I was very professional…. I love all the residents and it is upsetting. Especially after a long illness, to nurse them and then they finally die. But it’s the families as well. You get a rapport with the families, especially after they have been here years. Practitioner

This led practitioners to talk abut finding the right balance in their relationships with service users, maintaining professionalism, having an awareness of boundaries, but being sensitive, flexible and enabling. It’s a fine line that staff need to tread when working with people. Our job is to empower people. We give people the information. We aren’t there to hand-hold. Now this group had two members of staff who got that balance. It’s about their expertise in being slightly challenging, saying,‘It’s kind of up to you what you do.’ They weren’t at the group every week, but they didn’t say, ‘We’ll see you in a year’s time.’ What they said was,‘We will pop back once every month just to see how things are going.’ Manager

Building a trusting relationship seemed to be particularly important when working with marginalised or excluded groups. One manager explained this in relation to the minority ethnic communities he worked with. I think relationships between the service user and the worker are paramount really and I will give you an example here. I have got a colleague who is bilingual and she is a woman and she is supporting three women, two who are Muslim and one [who is a] Sikh. These service users, they have received no support at all and it is only because this worker is being involved now and she is spending two mornings a week with these three individuals for them to be integrated within a day centre or a day opportunity provision. Because she has a good understanding of the cultural background of these individuals, she is looking at a communication passport [for those who cannot speak easily for themselves]. So relationship [is not only important] in terms of language, because one of the users has reverted to a community language, because she is with mum all the time. But also when she is doing the communication passport, she is touching upon issues such as dress code, food, diet, cultural festivities. So there are specific individual needs that need 241

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to be catered for particularly, for people who are from different cultural groups. Manager

Communication Communication skills and the ability to listen, emerged as both a precondition for good relationships with service users and a key part of them. This reflects other findings. If one word sums up most what service users want from social care, it is ‘listening’…. Listening to and respecting service users was seen as a crucial theme for good social care…. Service users referred to the need for social care workers to have ‘communication and relationship skills’ so that they can work with service users to identify problems and find solutions together. (Beresford et al, 2005, p 26) A recurring theme in conversations about person-centred support was the importance of listening. Service users frequently made the point, equating listening with good practice. I need to be listened to by people. Good staff listen to me. Service user I think it’s really important to listen to what people say and learn from it. Service user Oh yes, very good, I can talk to her. She is very understanding and listens to your point of view. Service user

A manager added: One message to emerge from person-centred planning is that we’ve always pretended to listen, but we haven’t. Manager

Practitioners too stressed the importance of good communication between them and service users. I think the communication here is very good between the staff and between the service users. In our meetings, I don’t feel uncomfortable about saying anything I want to say. Practitioner

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One-to-one stuff, we do try, don’t we? Time and staff permitting. Activities can be anything, sitting down and having a game with someone, discussing a newspaper, just giving someone that oneto-one time, especially those with a communication problem. Practitioner The issue that older people tell me is, ‘When I pick the phone up, I want somebody with a body and a brain. I don’t want a pushbutton phone.’ Older people just give up. Practitioner Speak to them, really, just go around and speak to people, find out their interests, chip away and see if they want to do something…. Every other day service or centre I have been to, it’s usually mainly just dealing with the physical care side of things. Whereas here, it isn’t that at all. It’s emotional and everything – emotional, educational. You do find out more about people this way, what their needs and wants are. Practitioner

In Downhampton a series of meetings bringing together family carers and council workers provided an opportunity for people to get to know each other and build relationships. As a result of this face-toface contact, family carers said that they were now more willing to contact the council and more confident that solutions could be found to their individual problems. How can I talk to a big officer? Now that I have met them, talked to them and mixed-in, I feel I can call them if I need to. They are people as well, the same as us. Carer/relative Inclusive communication

Good communication means being able to communicate with all service users, regardless of the language they use, or whether they communicate differently. The continuing inability of services to do this routinely highlights another barrier in the way of person-centred support. As one Asian family member said: Language is the biggest barrier. Carer/relative

Another carer highlighted ongoing problems with translators and interpreters. She had arranged for a translator to come to a meeting with a school. The translator didn’t turn up, so another was organised. 243

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She could understand the gist of what was being said and could tell that the translator was saying what she thought should be said, rather than translating accurately. Although she pointed this out, the translator persisted. Lack of staff skills in British Sign Language (BSL) used by many deaf people, could lead to their exclusion. You know, we might have deaf people, for example, but how are we going to communicate with them? How are you going to give person-centred support, if you can’t even communicate with them? Practitioner

Communication with people who do not communicate verbally can be complex and is likely to take more time. But it is certainly possible and is key to practitioners developing relationships with them. I think the relationship thing is key isn’t it, because there are a lot of service users who we work with, who haven’t got verbal communication and can’t voice their opinions and we are having to best guess what they want and that is a real challenge, but it still is possible to build relationships. Not known

Communication devices are crucial for some service users, but we learned that they were not necessarily routinely and reliably available, despite their importance. I think communication is the vital thing, I think if someone needs a communicator, it should be by law they have to have one. If they want everyone to be equal, the most equal thing is being able to communicate with others. Ideally they should have two. It should be a top priority like mobility is. If they are saying someone needed it when they were 18, they will need it when they are 25 or 55. Can you imagine the pure frustration of having it all in your head, but not being able to say it? Practitioner

A young man living in residential services experienced frequent difficulties with his electronic communication device (a Delta communicator). While he was under 18, this was provided and maintained at no cost to him, but now he was an adult he was expected to fund repairs himself (and the insurance company said

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the communicator was too old to be covered). The equipment was expensive but prone to failure. Repairs were costly and took a long time. His family and service workers tried to help him get funding for a new device, but this took time and was difficult. His request for financial help from the local council was not regarded as a priority, according to the service’s manager, because he was living in residential accommodation, so was safe and had the alternative of using a communication board. The young man decided to move to another residential service. By this time, his communicator was not working and he was waiting for funding for a new one. This meant that for many months, he was without this crucial piece of equipment and was growing increasingly frustrated at his inability to be understood. It’s not ideal to move somewhere new when you can’t communicate. Manager

People who communicate differently are more likely to have other people speaking on their behalf. If somebody has had a CVA [stroke] and they can’t talk for themselves, then the nurses, because I think it is easier, will tend to ask the family and the family will answer on behalf of the resident. So it is very difficult to assess someone who has speech difficulties and all the effects on the brain a stroke gives them, to try and discuss what they would like, what do you really want? And that takes a lot of patience, a lot of time and a lot of skill, as well in communicating with people. So I think that right from the beginning when they are admitted, that question is avoided. Manager People with more problems, they tend not to listen to them. I think they can’t be bothered to make the effort of sitting down with that person because it’s going to take longer to talk to them…. It tends to take a long time to communicate and they end up making decisions for that person because otherwise it will take time. Practitioner

Practitioners may only come to understand someone’s wishes after spending time getting to know them and the way they communicate. They may need to think of different ways to support the service user to communicate what they want. This demands patience, time and skill. It is likely to mean that services need to devote additional time to a service user with a communication impairment. 245

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Yes and just actually allowing people to make the choices and the decisions, rather than doing it for them. Just because they are having problems communicating and can’t get through, it is about trying to get beyond that and think of ways that you can communicate but knowing that that is what you are trying to achieve. Not known

The importance of working with individuals Practitioners talked about the benefits of working on a more one-toone basis with service users. Residents have got so much out of it, having that attention, oneto-one. It really boosts the morale and self-esteem, especially for those that don’t go out…. Having the one-to-one, rather than having to shout a bit louder to be heard, they felt as if they mattered. Practitioner I think where I work, we are very lucky. We are very well staffed and I can see how that’s so fundamental to being person-centred so it can really work, because sometimes we’ve got 20 people and we’ve got seven staff on and it’s great because we can do a couple of one-to-ones. We can walk to the shops. We’re a bigger group and we can we take more risks, and the staff are committed and have been there for a while. Manager

But this raised the issue of staffing levels which we discussed in Chapter Four and the frequently inadequate staffing levels in underfunded social care services. When one service introduced a person-centred planning (PCP) approach, it exposed the lack of time available to work on a one-to-one basis with service users. I suppose one of the things that we find in terms of person-centred planning, we have a system, but it is the time element there, that in terms of finding people to do that very in-depth work, really because of all the communication issues and so on, it is very time consuming. Which I suppose leads back to this thought, that it is very much a time issue, which is one of the biggest stumbling blocks to being really person-centred. We try and be as person-centred as we can be in our normal processes, but in terms of actually doing a proper person-centred plan, using the proper means of communication and so on for that particular individual, it is not about having a blanket approach. It is about an approach for each 246

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individual. It is very time consuming. We just don’t seem to have that time. Not known

A few participants felt that moving to a smaller service could make it easier to develop relationships and work in a person-centred way. I think generally that the move to make services smaller has got to continue because the bigger a service is, the harder it is to provide individual support isn’t it? If you’ve got a day centre with 120 people accessing it, how can you possibly support each of those people in a person-centred way? It’s practically impossible isn’t it, to give 120 people a choice of lunch, individual choice of lunch for example, with two cooks? So I just think that you have to keep looking at down-sizing the [organisation of] services all the time. Not known

Two services had found ways to add to their staff teams which enabled them to spend more time working on a one-to-one basis with service users. They did this by raising funds locally and recruiting volunteers. In the last two years the service has appointed a health and fitness worker and an education support worker, which are funded by voluntary income. The volunteer base has built up. It has doubled in the last two years. Volunteers take on roles such as swimming buddies, and working with people on the computers. Manager

Summary This chapter focuses on the practice of social care staff who work directly with service users, including both professionally qualified and unqualified workers. The chapter considers the qualities and skills that research and consultation has consistently shown service users value from practitioners and which closely coincide with people’s understandings of person-centred support. Many service users feel that practitioners make unhelpful assumptions about what they can and can’t do, as part of a disempowering service culture. Services are often inflexible, with both practitioners and service users stressing the importance of moving from a one-size-fits-all, to a more flexible approach to practice. A day centre for people with dementia offers a case study of responsive practice, while direct payments provide an example of how to achieve it. We see how inflexible organisations

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and particularly, the organisation and inflexibility of domiciliary care services, works against person-centred practice. Service users emphasise the importance of their relationship with practitioners. Such relationships are seen as empowering and central for person-centred support. A second case study focuses on relationships in end of life care and some of the barriers that can arise. Continuity, good communication and listening skills are also highlighted as key components for person-centred practice. This extends to supporting communication with people who communicate differently, both to ensure their inclusion and the development of relationships with practitioners. One-to-one working is identified as a key element of person-centred support. References Beresford, P., Adshead, L. and Croft, S. (2007) Palliative care, Social work and service users: Making life possible, London: Jessica Kingsley Publishers. Beresford, P., Shamash, O., Forrest,V.,Turner, M. and Branfield, F. (2005) Developing social care: Service users’ vision for adult support (Report of a consultation on the future of adult social care),Adult Services Report 07, London: Social Care Institute for Excellence in association with Shaping Our Lives. Branfield, F., Beresford, P., Danagher, N. and Webb, R. (2005) Independence, well-being and choice: A response to the Green Paper on adult social care: Report of a consultation with service users, London: National Centre for Independent Living and Shaping Our Lives. De Winter, M. and Noom, M. (2003) ‘The quality of services to homeless young people’, British Journal of Social Work, vol 33, no 3, pp 325-37. DH (Department of Health) (2001) The Children Act now: Messages from research, Prepared by Jane Aldgate and June Statham, DH (http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/ Publicationsandstatistics/Lettersandcirculars/Chiefinspectorletters/ DH_4004859). DH (Department of Health) (2006) Our health, our love, our say: A new direction for community services, White Paper, Department of Health, London: The Stationery Office. Douglas,A., MacDonald, C. and Taylor, M. (1998) Living independently with support: Service users’ perspectives on floating support, Bristol: The Policy Press. Fleming, J. (1999) ‘Working with young homeless people: lessons from the voluntary sector for statutory social work’, Practice, vol 11, no 4, pp 45-57. 248

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Hampshire County Council (2008) Getting personal: A fair deal for better care and support.The report of Hampshire County Council’s Commission of Inquiry into personalisation and the future of adult social care, Winchester: Hampshire County Council. Harding, T. and Beresford, P. (1996) The Standards We Expect: What service users and carers want from social services workers, London: National Institute for Social Work. Parton, N. (2003) ‘Reconsidering professional practice’, British Journal of Social Work, vol 33, no 1, pp 1-16. Pritchard, C., Cotton, A., Bowen, D. and Williams, R. (1998) ‘Young people’s views on educational social work’, British Journal of Social Work, vol 28, pp 915-38.

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Part Three: Broader Issues for Person-Centred Support

nine

Service user cameos Introduction In this part of the book we offer a few more detailed accounts of some particular people we encountered in the Standards We Expect project which we have drawn upon. By offering such in-depth flesh and blood stories, we hope we can offer further insights into both the experience of person-centred support and some of the barriers that can be encountered in developing and practising it. All of these accounts are offered with the agreement of the people involved and are based on conversations and discussions with them. We have sometimes changed minor details so that people who don’t wish to, can’t be identified and their anonymity compromised. All are ‘real people’, but Serena’s story is a compilation of the experience of several people. We have also changed people’s names to protect their privacy. Christopher’s account highlights just what a difference leaving an institution and living on direct payments can make for a disabled person, as well as the amount of effort it demands – both of the person themselves and those seeking to support them. Roger and Bernadette’s story shows how rich a life people can have together and the contribution they can make to their community, but also sometimes the difficulties they face and must overcome for this to be realised. Abdul’s narrative tells us about the continuing problems there can be even when services are working hard to provide person-centred support as well as the importance of meeting people who share your ethnic background. Finally, we hear from Serena who draws together the experience of several young disabled people living in a residential home. When you read these cameos, you might want to reflect on whether there are any particular themes or issues which seem to emerge as particularly important or which tend to recur. We will return to this at the end of the chapter.

Christopher’s story Christopher is a white man in his fifties who uses a wheelchair. He has a speech impairment. He was born in the United States and lived 253

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there until coming to England when he was five. The story of his life highlights the contrast between living in residential homes and living independently using direct payments. Christopher struggled with the lack of choice and control he experienced in residential homes. He had periods of mental distress and depression over that time. After 30 years living in institutions, making the transition to live independently was difficult and frightening. There were many barriers in the way of moving out, but eventually Christopher decided to leave the residential home he was living in. He simultaneously moved to a new flat and began using a direct payment to employ personal assistants (PAs). Because of the difficulties, Christopher had doubts whether it would work. It took him a long time to get used to living on his own. However, now some years later, he is very clear about the benefits of the move. He is very pleased to be in his own flat, using direct payments. Christopher is a member of the Grandshire Disabled People’s Council and thinks it is a useful and important thing to be part of. He greatly values going to the Barry Centre, a day centre for people with physical and sensory impairments. Although he goes less than he used to, it still plays an important role in his life. He also values the emotional support and practical help staff at the centre gave him before he decided to move out on his own. Before I did direct payments, I used to live in many residential homes all over the country for 30 years. I lived in about four different care homes in four different parts of the country. I lived in the middle of nowhere with 50 residents. I was in a [group] of learning disabled people and we used to talk a lot and argue a lot and fall out. We used to play 80s music, but we didn’t go out a lot, and the food was awful. You had to wait for someone to do anything for you. I thought I was going to be there forever. A lot of my friends left and I had a breakdown because I wasn’t happy. I used to keep it in me. Nine years I was there [one particular home]. I couldn’t make very many choices then, I can make more now. You could not make a choice what food you eat and what time you go to bed and get up. I used to worry a lot about other [residents]. I had two friends who were not able to talk at all. I used to help them to communicate with the staff.

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The difficulties in moving were it took me about 10 years to think about it. My social worker used to go on at me, ‘You should do direct payments’. The incident that made me decide to change was I had another breakdown. I wept at the Barry Centre and they asked me what was the matter and told me to go to the doctor. I went to the doctor. They put me on anti-depressants and I used to weep everyday for an hour, for a year. The Barry Centre helped me a lot – and my social worker. In the year 2001 I got a brand new flat. I started to do direct payments. I decided to make the change in my life because I wanted more freedom and to be able to go out more and leave when I want. It was very nerve-racking at the beginning, I nearly went back to residential homes, but I didn’t want to go back. I was very, very nervous. It was a big move for me. I took about two years to get used to living on my own. I did direct payments the day I got in. I did it [ever since] and it’s wonderful. I got wonderful staff. I do think there was a lot of paperwork to do to get the care money. Less paperwork would have made it easier, but you got to do the paperwork to get the money. Direct payments give me the freedom to do what I want to do. I can go out when I want with my personal assistant. I am my own boss. I pay my staff. I am still very happy. It is hard work, but is worthwhile. I have two personal assistants. They work one week on and one week off. They do what I want them to, but in a nice way, at the end of the day we are all human beings. Grandshire Disabled People’s Council support me to do my payroll. It means a lot to me to live independently. The difference is I get more freedom and I am my own boss and I go out a lot with my PA [personal assistant] and it’s freedom. I used to be at the Barry Centre every day when I came to Largetown. I come here three days a week now and I do activities. It is very good. I think it is very important for disabled people to come here, to socialise, go on the internet and meet [people with other impairments]. I think being a part of a disabled [people’s] organisation has helped me move out of care homes.

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I used to think about other people before me in a care home and I used to worry about them, that they get the right care. At the beginning when I moved out, I did feel a bit guilty, but I don’t now because residential homes taught me a lot about me and made me what I am today.

Roger and Bernadette’s life together Roger and Bernadette are young white people who have now been married for five years. They have learning difficulties. Bernadette describes getting married as “one of my personal dreams”. They have two budgies, but no plans for any children. Getting married was a difficult road for them. It took some time to happen, as they faced considerable opposition from Bernadette’s family. They went as far as to tell her that Roger was having affairs with other women in an effort to break up their relationship. It was my family that didn’t want us to get married. I could only get married now that they are gone [her parents died]. We used to argue about this and I would go off in a bad mood and I would say to them that when they had gone, I could do what I liked.

The couple continue to experience difficulties with other family members who do not always support what they want. Roger and Bernadette are keen to move to a bigger flat or a small house, but their families are not supportive. They believe that Roger and Bernadette are safe and secure in their current accommodation and don’t want this to change. They have twice been offered alternative accommodation, but their families have blocked the move both times. While they agree that there are safety concerns, they would like somewhere bigger as they only have a one-bedroom flat. The issue is made more difficult by a general lack of larger flats in the area where they live. Roger and Bernadette feel that they have much more control over their lives having their own place. They remember residential homes as places with many rules and regulations which meant that they were not even allowed to walk a short distance along the road. They felt that they were being treated like children. Bernadette recalls that they did not always stick to the rules and that they often went out when they were not meant to!

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Now that they live in supported accommodation they say that they have a particularly good relationship with one of their support workers who has worked with them for some time. They are now very active in user involvement in their housing association. It offers them many opportunities to do things. They are both members of the local and national tenants’ advisory group and have been involved with training new staff when they start working at the association. Bernadette’s involvement also includes meetings with senior managers, who she says are generally very responsive to what the service users/residents say. Managers also come and visit the flats where they live to find out what the service users/residents think about things. One of the changes that they have been able to achieve through this involvement, is that they are now paid for the training work that they do for the housing association. When they attend meetings of the housing association’s national tenants’ group, it involves travelling long distances. They used to have help going to the meetings. A support worker would always travel with them, but the number of hours of support that they receive has been reduced, so they now support each other to travel and attend meetings. Bernadette feels it is not such a bad thing not having staff around as much as they once did. She says: Sometimes it feels better not having the staff around. We just go out with our friends and have a good time.

Part of the reason for this is that some of the staff who work with them have negative attitudes to people with learning difficulties. On one occasion they were out with a group of people with learning difficulties for a Christmas celebration and the support worker with the group would not let them have more than one alcoholic drink. Bernadette has also had negative experiences with staff who are meant to help her to get to meetings and appointments taking her to the wrong place. Once she was taken to the dentist when she should have been going to the doctor. Another time she was put on to a train going to Edinburgh when she was actually going to Glasgow. Now Bernadette checks everything herself. Communication can be another difficulty with support workers. While things generally work well, there can be problems when support workers are going to be late or a different worker is being sent because their usual person is not well. Roger and Bernadette are not always told about such changes. They think it is really important that they are told as they can sometimes be left waiting for somebody who is 257

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not going to turn up. The attitudes of people in the community can also be a problem sometimes. As well as the work that they do with their housing association, Bernadette also works with a group called ‘Health and Happiness’. This is a user-led organisation that mainly focuses on social and leisure opportunities that contribute towards a healthy lifestyle for people with learning difficulties. She used to do voluntary work at a day centre for people with learning difficulties, having previously been a user there. She has stopped doing it as: I got fed up with that. I am too well advanced for them…. There’s more to life than centres.

Roger does gardening work through a supported employment project. Both he and Bernadette enjoy gardening. They took part in a project at the flats where they live to turn a disused car park into a garden and are very proud of what they achieved. They go out and about a lot in the area where they live, so being able to use the local bus services free of charge is very important to them. The bus drivers are generally friendly and helpful, although occasionally they come across one who is not. As Bernadette recalls: I use a white stick so it is obvious that I have free travel and most of the bus drivers don’t worry about asking to see my bus pass, but I got the bus one day and went to sit down and the driver called me back to check my pass.

They are also a bit worried about their free travel as there is talk that this may be cut back. This would make it much more difficult for them to get around.

Abdul’s story Abdul is 41, he’s Asian and he has learning difficulties and epilepsy. He was born locally and has lived in the Downhampton area all his life. He lives with his mum and dad and his sister lives next door with her husband and three daughters. He does not have other family living nearby, but he does have an aunt in another part of the UK. He speaks Urdu, but as he points out, he always speaks English to English people. Sometimes he visits Pakistan. He is hoping to go again soon to visit his aunt and see her new house which he says his “mum built for her”.

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Abdul has been to at least six different schools and colleges. He remembers the schools well and can list the names of the friends he had at each of them. However, these friendships only lasted while he was at each school or college. He remembers one school with particular fondness. He enjoyed reading and writing, art and cookery: We used to make our own toast and cakes and biscuits. We used to have a cup of tea too…. I used to make cheese pie and bake cakes, I enjoyed it. When I left I was sad.

Abdul’s Muslim faith is important to him and, he explains that he can only eat permitted (Halal) meat from animals and birds that have been killed and prepared in a certain way: Our meat is different. We have to take God’s permission to cut it…. We have to think about the Pakistani God first. If he gives permission, we cut it. If he doesn’t, we don’t.

The meat at the schools and colleges that he went to often wasn’t Halal. The staff that worked there did not know much about his background. Abdul, however, says he enjoyed: Going to Christmas parties at school and eating fish and chips.

He is very fond of music, particularly songs from Bollywood films. He remembers teachers playing the piano at school assembly. We used to have DJs and discos and all these sorts of things over there, Agadoo, Fame, Grease, all sorts of songs.

It is not clear why he went to so many different schools and colleges. He explains that he was told he couldn’t return to one college after deciding not to go to lessons one day. Mondays I was supposed to be at college, but the lollypop lady said, ‘Go and enjoy yourself. Go on the train to your auntie’s house.’ Well, I went to Reading but I didn’t get to Swindon. I’ll tell you why. You need an orange ticket don’t you? The ticket man told me I had to get off and the police arrested me. The college called my mum and the police called my mum too. The college said I couldn’t come to college any more. Mum was angry. She said she would ‘send the fare back. His sister will pick him up from the station.’ 259

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Abdul is an easy-going and peaceful person. He doesn’t like arguments or rudeness. He seems genuinely puzzled about why people sometimes behave badly. He described some experiences of bad behaviour that clearly trouble him. Did I have a Pakistani girlfriend at college? People used to say I did. I didn’t know. They used to say dirty language as well. They said nasty things. We’re not supposed to use that language. What do people use it for?... You shouldn’t be horrible and you shouldn’t fight. We should all be happy and not argue.

At one college, he did woodwork as part of an employment project. He says, ‘I miss all these jobs now.’ His current social worker says, ‘He can do a [job] training scheme, or go to a supported employment project. But unfortunately there are no places at the moment.’ Abdul says ‘There’s no space for me.’ If he gets a place, he says, ‘I’ll be happy then.’ He is keen to work, partly to keep busy, but also because he feels that as a man of his age, he should be working and earning money. After leaving college, boredom became a big problem for Abdul. He used to stay at home and rarely saw anyone outside his family. He became isolated and didn’t have things to do during the day. Sitting at home, I get bored sometimes. It’s no good watching telly the whole time, [watching] the same dramas, same things. It’s no good…. I want to get out everyday really. I want to find a job that is every day.

Then two social workers came to see him and said, ‘Come to Our Group.’ Our Group is a self-advocacy group for people with learning difficulties from black and minority ethnic communities. The group was set up by social workers and the local learning disability partnership board (LDBP). They also set up a carers’ group for carers from black and minority ethnic communities. They have a worker who works with health and social care professionals to improve cultural awareness. Abdul has now been going to the group for around five years. He says ‘Our Group is nice.’ He has made lots of friends at the group: I like talking to good people and learning new things.

He enjoys art classes, the men’s group and the exercise group. He has also taken part in gardening and many training courses during the last two years. Most of the group’s members are from a similar ethnic and 260

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cultural background to Abdul. It was originally just for men, but in the last 18 months, a women’s group has also been set up. The two groups take part in activities like training together. Abdul goes to Our Group two days a week, but just stays at home the rest of the time. He likes the workers at the group and says he has good talks with them. He turns to them for advice and to talk about things he is worried about. He is clear that the group thinks for itself, saying: Our Group make their choices what they want to do.

He also goes to other meetings on behalf of the group – meetings at a local advocacy group and to the learning disability partnership board. Abdul enjoys the exercise classes held on a Friday. He has lost weight and is eating more healthily. His family have helped him to do this and he has learnt about healthy eating at Our Group. I do exercise now innit? I’m nice and slim now. I’m getting there. [Lunch is] cheese sandwiches, fruit, apple, grapes, yoghurt, that’s it, nothing else besides that. [At the men’s group], we talk about relationships. It’s hard to say that word. How to love a woman. If you love a girl, what do you do in bed and all these things. I learned a lot of things, I didn’t know how to make love.

The workers at the group were able to refer Abdul to a psychologist to help talk about some problems. He has found these sessions useful and continues to attend. Abdul doesn’t see Our Group members, or any other friends outside the group. He explains that: They aren’t allowed to come to my house. I don’t know why. It’s a hard question. My mum don’t want people to come to my house. One … came – my mum got a bit angry. I’m not allowed to go to their house, that’s the point. Without parent’s permission, [their grown-up] children can’t come.

Abdul seems sad and a bit confused by this. He doesn’t explain why his friends can’t come to the house, but does not question his parents’ decision. Abdul has clearly enjoyed the cookery he has done at school and college, but isn’t able to cook at home. My mum doesn’t let me use the gas. The gas is dangerous for [me] isn’t it? You know that don’t you? For me it’s dangerous, not for everybody. If I was on myself then the house might go [blow] up. 261

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His parents don’t like to leave him alone and ask his nieces to sit with him when they have to go out. I can’t look after myself properly. People that have epilepsy, it’s dangerous. When my mum goes out, she asks the twins to look after me. They can’t look after me the whole time can they?

Perhaps for this reason, he doesn’t leave the house very often by himself. He used to travel to and from college on the bus, but no longer uses public transport on his own. He sometimes goes to the park in summer or to get milk at the local shop. Abdul says he is not good with managing money, so his mum manages it for him. He says he can choose his clothes, but his mum goes to the shops and buys them. My mum has my money. My money my mum looks after. I’m not so good with money. My money, not other people can spend, only my mum. She looks after me. She buys me these trousers.

Abdul got married about 10 years ago. His wife was from Pakistan and they did not meet prior to the wedding. The marriage did not work out and ended in divorce. It is a subject that Abdul thinks about a lot and is keen to talk about. He says he got married over the telephone because he couldn’t get his passport in time to be able to have the wedding celebration in Pakistan. I picked up the phone, ‘Are you happy?’ I said, ‘I am happy.’

The marriage was difficult from the start. Abdul told me his wife did not respect him as a husband or respect his family. My mum used to tell her off and my dad used to tell her off so she used to go in the room and cry.

His dad said: She should clean his [Abdul’s] shaver and give him a bath.

Instead, Abdul says: She used to force me to make the tea.

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If a woman respects and gets on nice, then people are happy in their own homes. If they argue and have fighting and breaking things, it’s not good is it?

There were also financial problems. His wife got a job, but did not support him financially. Abdul’s dad has told him that he is trying to find a new wife for him in Pakistan. But his mum does not want him to remarry. My mum says ‘Your dad can sit in the wedding, I’m not going to sit in the wedding.’ She don’t want me married. Why is he happy and she’s not happy? All [the] people will say ‘Where is your mum?’ ... My dad is ready, my mum is not ready.

It is unclear whether Abdul feels he is ready. He does say he is lonely. When I sleep, I feel alone, with no woman sleeping with me.

But he is also worried about the idea of another marriage and asks: Do you think the game will start again? I still worry now, when I’m sleeping, she might not look after me.

Serena’s story of residential living This cameo is a composite of comments and information from residents of a residential service for young people with physical impairments. All the scenarios and accounts of what happened are true, but Serena is a fictional embodiment of shared experience. Serena is a 22-year-old white woman who lives at Pippin Close. She moved there two years ago after previously attending a residential school for disabled people in another area. She is continuing her education at a local college. She is interested in fashion and would like to work in a clothes shop. Serena’s mum, dad and younger brother live locally, about 15 minutes away. She has no experience of living independently. She admits that when she lived at home, her mum did all the cooking and housework. She said she was encouraged to keep her room clean at college and managed her pocket money, but everything else was taken care of by her parents and college staff. She enjoyed living at college and made 263

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lots of friends there. Unfortunately it was hard to stay in touch as they came from all over the country and it is difficult for her to travel on public transport because it is not fully accessible. Serena didn’t know anything about Pippin Close before her social worker mentioned it to her as an option. Serena was surprised that she didn’t receive more help planning where she would live after college. She says it took ages to get a social worker and because of this she had to return to live with her family when college finished. When she heard about Pippin Close, Serena thought it sounded really good. Living with other young people appealed to her and she said she thought it was time to be a bit more independent. The manager of Pippin Close came to visit her to talk about moving and she was able to go around for dinner twice before making up her mind. She was impressed with the unit, which was new and purpose built. I thought it was nice, clean, new, nice spaces and big bedrooms. I liked the idea of having my own bathroom. It has nice grounds and is not far from town.

She found it a little strange when she first moved in because she didn’t know anyone. She felt a bit of an outsider because everyone knew each other. However, the staff were friendly and that she liked the fact that a lot of them were quite young, closer to her age than her mum’s! She found some of the rules and regulations at Pippin Close a bit difficult at first and they can still be annoying. For example, she doesn’t like having a ‘Personal Development Plan’, which lists all her personal information and medical details, as well as her personal goals. She said it makes her feel like a child and asked the researcher: You don’t have one of those in your bedroom do you?

She also finds some of the paperwork, like risk assessments, really frustrating. She explains that when she and a friend wanted to go to the new Multiplex cinema, there was a wait until staff from Pippin Close had done a risk assessment for the trip. Serena says she knows that there have to be rules to protect staff and service users. But she does not want to have to wait for two weeks before she does something that an ‘ordinary’ young adult would do without thinking about, or asking permission. She now attends a local college but, as a wheelchair user, has experienced several access problems. These have affected her learning and have made her feel like an outsider. 264

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Access is not so good – you have to open doors. I have to have people open doors for me. You have to have stuff moved out of the way, sometimes because they are blocking where you want to get to and that makes it really awkward. If they had electric doors, that would solve all the problems like getting to class and that. I’d be fine.

Serena is talking to the college and asking them to make improvements, but they are slow to respond. More positively, she has a learning support worker to help her to take notes and says that she has been very useful. Serena was worried she would not be able to keep up in class, but says the support worker has been really good and she gets on well with her. Serena enjoys going into the local town with her friends from Pippin Close. They like to go to the shops and to McDonald’s. Some of the shops and banks are not accessible for wheelchair users, so she goes to the ones that are. She said one of her friends uses a buggy that is larger than a wheelchair and can’t get into McDonald’s because the doors aren’t wide enough. They used to go through the ‘drive-thru’ to get their food instead, but have been told it is ‘dangerous’ and they can’t do it anymore. She likes to go into town using her wheelchair. It can be difficult when people leave their wheelie bins out on the pavement and she has to go into the road to get past. She was upset when someone living down the road complained that her car had been scratched by a wheelchair user from Pippin Close. Serena was adamant that no one from Pippin Close was responsible. She said she was angry and feels awkward going past now. They don’t understand it from our point of view. They don’t know what it’s like to be a wheelchair user.

Travel arrangements can be restrictive for her and other service users. The unit has a mini-bus and van, but these require some forward planning to arrange which stops them doing things spontaneously. If we are going out we need to organise transport, a driver and we have to let them know as soon as possible. If we are going home or anything, we have to let them know. You have to plan a bit.

She doesn’t use public transport because even on ‘accessible’ bus-routes, the buses that turn up aren’t always accessible. She is also nervous about meeting people she doesn’t know: 265

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I wouldn’t go on my own. You don’t know what people are out there. I don’t trust those people. They might look friendly, but they might not be.

She recently went on a train journey for the first time. It took a lot of organising and she had to travel to the next town to get the train because her local station is not accessible for wheelchair users. Serena says she has a say where she lives, at residents’ meetings. She doesn’t have to speak up much because she is happy with the way the home works. With other residents, she asked if the home could have a bigger kitchen. It took a while, but recently they had builders in to knock-through the kitchen into one of the bathrooms and put in new facilities. Serena was really happy with this because the new sink and work surfaces are height adjustable. This means she can now use them. She is planning to practice her cooking now because she couldn’t before. She is hoping she will have help from a volunteer who has been helping one of the other residents with cooking. She was recently able to wash-up for the first time since moving to Pippin Close. She is not interested in being involved with other service user forums, like the regional or national forums organised by the disability charity which runs her home. She feels these things are boring. She is not a member of any disabled people’s organisations and does not plan to join any. She would rather spend time with non-disabled people. That’s why she turned down a voluntary job working in a local charity shop for a national disabled people’s organisation. Serena said she is working hard to become independent and says the staff at Pippin Close are generally very helpful with this. She says she has only had problems with two members of staff. They had worked in care homes for a long time and expected to do everything for her, rather than let her practise doing things for herself. However, one has moved to another job and she tries to avoid the other one when she is working. Serena emphasises that she is much more independent since moving to Pippin Close. It is the “best place I have been”. She says she speaks up for herself now in ways she never used to. She would not have considered being able to live on her own when she first moved into the unit, but that is what she wants to do now. The support has given me the confidence to do things I would not have done before.

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At the moment, Serena explains, her biggest problem is a disagreement she has with her family about managing money. In the past her dad has always looked after her money for her, including her welfare benefits. She has been asking him for ages about managing it herself because she knows she will have to budget and look after her own money in the future. She says her dad hasn’t trusted her since she forgot her personal identification number (PIN) for her bankcard and the cashpoint machine ‘swallowed’ her card. She explained this was a mistake that could have happened to anyone and that she would make sure it didn’t happen again if she got the chance. This has led to several arguments and is putting a strain on her relationship with her parents. The home manager tried to help by having a meeting with Serena and her parents. But her dad hasn’t changed his mind and Serena is not sure what else she can do. She says her dad loves her, but is really worried about things going wrong. He is not very keen for her to move to her own flat in the future because he is worried that she won’t be safe. Your parents are a massive thing, but they need – especially when you go into a residential home – they need to know that they can care for you and they can do what they like for you, but they need to know that you want your space.

Serena is worried about this because she knows she wants to live more independently and doesn’t want it to get in the way of her relationship with her dad. Serena will have to move out of the unit before she is 25 because of the conditions of its registration. By then she hopes she will be able to live on her own. She has put her name down on the local authority housing list already, but hasn’t yet been offered anything. She is concerned because there are not many houses suitable for disabled people in the town. She wants to stay there to be close to her friends and family. She would like to move to one of the flats which are part of the same development as Pippin Close, but this depends on a flat becoming available. Other young disabled people have had real problems finding suitable houses or flats to move to when they leave Pippin Close. Nothing seems to happen until a few months before you have to leave and then it’s a big panic to find somewhere to live. Her best friend is considering moving out of the area, so that she can find somewhere suitable to live, but this isn’t what Serena wants.

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Reflections The people we have heard from here have many different experiences and backgrounds. They are themselves diverse and use a diverse range of services, with different issues and life experiences, bringing them to where they are. At the same time they do highlight some common themes and issues, particularly issues relating to and highlighting person-centred support. We can see the importance of service user focused support, self-help, mutual aid and group support – as well as the difficulties there can be if they are not available to turn to. Also highlighted is the crucial importance of workers skilled in offering person-centred support, who treat service users with equality and respect. This stands out for all the people included in the cameos. Key practice points emerge too, for example, in relation to themes of intimate relationships and supporting independent living. Different issues also seem to interact with each other, sometimes in unhelpful ways. For instance, some of the people we have included, had to deal with parental control and disapproval. While such barriers from parents and other family members might be common for many non-disabled people, here they assume especial importance because of people’s impairments. Families often disapprove of their growing and adult children’s lifestyles, choices and relationships. However, for the people in the cameos, the problems are magnified because of perceptions of their impairments and disability discrimination. Families can be key to supporting independent living, but as we observe elsewhere, if they are not supported to do this, then they can become yet another obstacle, rather than a key advocate for service users.

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Capacity-building for support There may be some difficult questions we have not engaged with about how we deliver effectively for everyone. There is inequality in the system now. How do we get the balance right? (David Morris, Senior Policy Adviser to the Mayor of London [Disability and Deaf equality], quoted in Beresford, 2009, p 16)

‘We must have someone to go to when it goes wrong – because our life depends on it – even when we are living independently. We are vulnerable even if we don’t want to be.’ (Service user, quoted in Beresford, 2009, p 28) Standard Nine: Ensuring an infrastructure of support

An infrastructure of support is essential if everybody is to be able to access person-centred support, including personal budgets and other forms of self-directed support on equal terms, regardless of their access or support needs, their culture or diversity. This requires the provision of high quality, reliable and independent advice, guidance, information, capacity-building and advocacy.

Introduction We saw in Chapter Eight how members of black and minority ethnic communities were often isolated from support and mainstream services. But while they face particular barriers, the difficulties all service users face in getting the support they need seems to be a much broader problem. Again it has much to do with the way that services work and their lack of fit with service users’ lives and experience. In this chapter we look in more detail at these difficulties and how they may be overcome, particularly through supporting people to be in a stronger

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position as service users to engage with services and support systems. Issues of capacity building are key here. Whatever system of support is available to ensure people can live as independently as possible, the first requirement is that it is readily available and accessible to them. This is no less true if the ambition is to move on from traditional approaches, to provide person-centred support. Indeed it may be that the need is even greater with personcentred support. What distinguishes person-centred support from traditional serviceled approaches to social care and social services is that it is essentially an interactive process. As we have seen, person-centred support is the antithesis of workers and agencies doing things to people and slotting them into existing service systems. Instead the goal is to work with service users to enable them to determine how they want to live and to provide them with the support to achieve this as far as possible. The individual is thus an active agent in the process. However, it is important to remember that many people come to this situation either having had many experiences of disempowerment or at very difficult times in their lives. People who have had long-term experience of institutionalisation, for example, will need help if they are to move from the passive role that has been demanded of them before, to the more active role implicit in person-centred support. This is also likely to be true for other people whose lives have been overshadowed by discrimination, oppression and disadvantage; who are facing the onset or worsening of impairment, distress, frailty, chronic or life-limiting conditions or experiencing loss, impoverishment and other difficult times. We are unlikely to be at our best and most capable in such circumstances. This is why support to make decisions and take action, what might best be called capacity-building, is such an important aspect of a personcentred approach to support. People are likely to be starting from a low baseline. We already know that independent advice, advocacy, self-advocacy, peer support and being involved in collective action (Fleming and Arches, 2007) can all have an important part to play in increasing people’s capacity, building their self-confidence, assertiveness and self-esteem. Participants in our project, however, also highlighted the crucial importance of information to support service users as a precondition for meaningful person-centred support. Information is part of this constellation of supports for self-determination. While information is thus central to this discussion, it is important that the issue of information is properly understood in the context that service users see it. There has been much talk about the importance 270

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of information through the modern history of social care. It has been highlighted in numerous official and other reports both since the community care reforms of the early 1990s and before. Providing more information is an almost inevitable recommendation of research reports, inquiries and policy documents. Part of its appeal seems to be that it can be seen as a discrete, easily undertaken, low cost activity that can readily be put in hand. There has also been a growing awareness of the need to provide ‘accessible’ information. There has been an emphasis on producing guides, ‘toolkits’, databases and other forms of information. However, service users and others, including carers, practitioners and advocates, make clear that information is a much more complex business than seems to have been recognised, both in terms of its purpose and process – if it is to be part of a helpful process of enabling people to access the support they need. It is one thing to provide information, another for it to be used. There may be a desire to make it ‘accessible’, but this does not mean that it is actually available to people. In this chapter we begin by looking at the information issues as service users and practitioners raise them in broader terms of capacity building.

Increasing access to support In its 2008 report on the state of social care, the Commission for Social Care Inspection drew a distinction between three groups of service users (CSCI, 2008). First, were those who accessed state support, who it concluded were generally getting a better service than before. Second, those who were debarred from such support by the narrowness of existing eligibility criteria, who were often struggling with a poor quality of life because their needs were not being met. The final group that the Commission for Social Care Inspection identified, were ‘selffunders’ – people paying for their own care. But while they were doing this and often paying significant sums, the Commission concluded that many were ‘lost to the system’. They got little information or advice about the different support options that might be available to them. As a result some people ended up inappropriately in residential care, swelling the numbers to their current high levels with close to half a million people living in residential institutions. In its 2009 report, the Commission reported a similar situation (CSCI, 2009). The Commission for Social Care Inspection’s findings have reinforced a growing official awareness of the problems in the way of people making informed decisions about the support they receive. While social care is still a residual state service, to which there is no 271

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general entitlement, there has been increasing recognition that all potential users of social care services, whether they are self-funding or turning to the state for support, are likely to need some help to access the kind of support that best suits them and most appropriately meets their needs. To challenge any sense people may have that they have little stake in the social care system, as it has become restricted to a smaller and smaller group, government began talking of making a ‘universal offer’ of information, advice and support for everyone, to help them negotiate the social care system. The national Hampshire Commission on Personalisation went as far as to recommend: • That the government sets out a Universal Offer for adult social care that has the following characteristics: ° Access to information, advice and supported selfassessment for all, regardless of level of need or financial situation; ° Links to other local services that promote health and well being, such as housing, and equipment and adaptations; ° Multiple points of access to good quality and reliable information, advice, advocacy and self-assessment. • That for all those with more intense and urgent care needs there is a right to brokerage to support planning and arranging care, regardless of means. • That, having agreed a universal offer, the government undertakes proper publicity, promotion and public engagement at a national level to ensure that everyone is aware of their entitlements. (Hampshire County Council, 2008, p 51) When the disabled people’s movement developed direct payments based on a philosophy of independent living, they took this even further, recognising that if disabled people (and other service users) were to be in control of their personal assistance and package of support, they might need help to set it up, run and administer it. Thus centres for independent living (CILs) and other user-controlled organisations developed direct payment schemes which offered support for people wishing to move from traditional social care provision to such a system of person-centred support under their own control.

Not knowing what is available A fundamental barrier to choice and control for service users in our project was the lack of up-to-date, accessible, reliable and relevant 272

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information. Participants said that people needed the right information to be in control. Service users explained that they needed to know and be told what was available to them. There is always an assumption that you already know and when people find out you don’t know something, they are so surprised, yet it has never struck them to actually tell you. Service user That is about being given that information and that is very helpful. Because I can’t do it all myself and I can’t access all the things and I don’t have the skills to deal with all of that. Service user

Many practitioners spoke about the problem of service users not knowing what services there were and stressed that this needed to be improved. The thing for me is also about information. In order for me, or for any one person, to be in control of their life, you have to have the right information to help you to choose and the information has to be easily accessible. Statutory agencies have got to be far more attuned to different people’s needs and how they want information and how they can take it in to make decisions. So it is informed choice, informed decisions. Not known It’s more information isn’t it? Better services to support people in their homes, because we see pretty awful examples. Manager A lot of people have got their problems and they are not aware of the people out there who can help them. Not known

For most people, social care is such an unknown, that it is only when things go wrong that they start to find out about it. This is a poor basis for connecting with it helpfully. This was what we found. As one experienced practitioner said: For us it’s crisis. Services aren’t advertised widely. It’s only when you reach crisis, you realise what is available. Often people come into contact with one part of the system and get hooked up with other bits. Practitioner

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The difficulty in making informed choices People felt that service users simply couldn’t make informed choices, without knowing what the options were. Service users were often asked to make decisions without having knowledge of the possibilities that might be open to them. This kind of decision-making was thought to be both disempowering and ineffective. Without real access to information, service users were made dependent on their service or project worker. I think people will come and ask you what you want, but you don’t necessarily always know what is available to ask for! So there will always be somebody who will ask, but you won’t necessarily know what there is to ask for. Service user Something that we found as well, is that people can’t make a choice because they don’t know everything that’s available. There’s so many organisations, but people can’t access the information to say these are the options and these are the choices I’m making. You know, it’s very difficult to make an informed decision on what they might want to access or might want to do. Manager Because as a worker, you don’t know what organisations are out there and I’m constantly like ‘I never knew you existed! Why do I not know about you?’ – and if you’re not aware of what’s going on, then how are our service users going to? What can we do to make that easier, to link everybody up? Manager [What’s important is] making sure that information is available and accessible to everyone to make choices about, so they would make choices about what they wanted to do with their lives. Not known

Information overload While providing more information, as we have said, has long been advanced as a way of making social care services more visible and accessible, the irony is that in some circumstances, there seems to no shortage of information. In fact, if anything, people were telling us that there was too much! Many participants in the project, particularly practitioners, felt overwhelmed by the volume of material coming their way. It made it difficult for them to help actual and potential service 274

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users. They had difficulties working out and remembering what was useful, coping with it all and keeping up to date. There’s too much information, too much going on. You only pick up selectively what’s important to you at the time. You do miss out on things and you forget things too. Practitioner So much information! I can’t remember half of all that and I’m sure [other] people are the same, trying to sit and to take in all the services that we speak to people about. Practitioner It is a very bewildering world. There is so much information out there, that we trip over all the time, but don’t actually realise what exists and it is about gathering that information. A lot of people don’t actually know what is going on round the corner from where they live. Practitioner

As we have been seeing, the service system can be extremely difficult for service users to negotiate. But significantly, practitioners too had difficulty dealing with its complexity and having to understand many different systems for different policies, services and benefits. These included social care, health, housing, education and employment, as well as pensions, disability and other welfare benefits. They pointed to the different rules and regulations that each system had. Each system was complicated and trying to find a way through them simultaneously could be a major challenge. It is confusing. You try to explain it to people, but they are slightly anxious because they have a social worker in the house. There’s an awful lot of information. It can be quite confusing for people. I would normally try to do my assessment in two visits, or talk to them and then go away and write it up and go back to confirm it. Practitioner You just spend the whole time explaining. You explain what you are there to do, what the [agency] carers might do, the panel process, what the DDWs [disability development workers] might do. You’re just explaining all the time. I get tired just thinking about it! Practitioner

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You try and explain it as best you can, but it is a lot of information. It is confusing, so it is hard for people to understand. Practitioner

Because the service ‘system’ is complex and multifaceted, it can be difficult to know where the problem lies, what needs to be done and how to sort it out. As one practitioner said: That’s quite disempowering isn’t it. If you want to challenge bits of that system, how easy is that if you’re thinking, ‘Well who is doing that? If I’m not happy about this element of my service, who do I see? How do I go about it?’ We do give out complaint leaflets, but it is a bit disempowering really. Practitioner

To make things more difficult, organisations, services, roles, workers and policies are constantly changing, so it is difficult for practitioners, let alone service users to keep abreast of developments. As a result, opportunities for support are likely to be missed. There could be a good person-centred day centre just around the corner from where a service user lives, but if they don’t know about it, it might as well not exist. It’s a constant changing sort of area, and a lot of the information is so complex, you know and then so jargonistic, that I think that a lot of service users certainly do need a lot of support and training. There’s got to be cultural change within the advocacy world itself. Manager One of the things about giving people the information they need to make choice, is about giving them options so that they can make a choice. At the moment, I feel like I don’t have all the information to give them anyway. Practitioner

As we have seen, the problems are even greater for people who communicate differently or for whom English is not their first language. It is so difficult. It is difficult enough for families from minority communities to understand the system and understand what you can have, what is your right, what you are entitled to, or not entitled to. If you are brought up in this country, it is hard enough. You imagine the scenario…. It must be absolutely a nightmare just to even begin to understand the meaning of some of the [information in a] language in which you can‘t speak. It must be a nightmare. 276

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I don’t understand some of it and I work in it! It is just appalling. Manager

Even when service users could access the system, it was inherently excluding, not least because of its reliance on rationing and its resulting bureaucratisation. It’s a middle class system, organised by the middle classes. You have got to be literate to get through the 15 forms. There is help available, from professionals, you can dig it out. Service user

While service users may often need support to access the information they need, as one said, ultimately you had to search things out for yourself. I think you have to dig if you want to find something out to suit yourself. There isn’t a booklet or a leaflet. You have to find out by asking different people yourself. I have been disabled since 1994, but I only found out about respite holidays two years ago by chance. By me talking about it today, members in this room know about it. If you want a service you have to try to find out for yourself. It would be more helpful if there was more literature available…. I have learnt more about what is on out there than before. We learn from each other. Service user

The value of direct contact Some service users told us that in their experience, the best way of finding things out, was by speaking to other service users. Carers said the same. They highlighted how this helped. [The centre] is a goldmine of information. Ninety per cent of what I know now, I found out from other people. It’s not written down anywhere. Service user If it wasn’t for [the carers’ group], many people here would not have known about, or received any services. Carer/relative Most people who become disabled come in through health services and the medical model. They emerge into the world of the social model. It is [making] the transition to that where they need information. Service user 277

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Practitioners echoed this point, saying that direct contact was the best way of finding things out for people they worked with. Sometimes I have about an hour and then I think, ‘Well I need some fresh air,’ and I walk around the community and I go in and talk to staff and find out what’s going on. You know, ‘Have you got anything in the future?’ Rather than ringing I prefer to go out and do it hands on and I did that yesterday. I did a full circle and I got some really good contacts, which I’ll be following up tomorrow. Practitioner

One manager stressed the need for everyone to be involved and put in the picture. Yes, I think that information-giving is as much to family and carers as it is to individuals themselves. Manager

Knowing how to negotiate the system enabled service users to make their own decisions, without having to be dependent on others. I have started thinking about the future. I have information so I know who to go to and what I should do to get services. I don’t have to run to [one worker] or [another] to ask them to help. Carer/relative

The need for help in accessing support In spite of the problems that people highlighted about relying on written information, many were still tied to the idea that providing more, or providing written information differently, could help people get the support they needed. So, for example, one service user said: I think if you are in a position where you need any form of care, or you want to have any form of education or help with benefits, first of all, there ought to be some form of booklet that has got absolutely everything in it. Not just bits and pieces, but absolutely everything in it so that anybody, whether it be an elderly person, somebody with learning difficulties, somebody who is disabled, anybody can access that one booklet and find within that the help that they need. Service user

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It is difficult though, to see how this could really solve the problem, given the well-rehearsed problems that such information does not work with many people, can be inaccessible and quickly outdated (Beresford and Croft, 1993) One manager talking about a guide for service users, unintentionally highlighted some of the difficulties. It is quite a lot of bumph to get when you first move in. It’s all a little bit too much. It would be better to have a nice friendly leaflet. Manager

But how would such a leaflet ever contain all the information someone might need to help them to deal with such a major change in their lives and how could written instruction ever be expected to address such a task? Other approaches to enabling people to access services and get a better idea of their rights and entitlements have been developed. For example, there is the national network of 130 disability advice services, DIAL UK (Disability Information and Advice Lines), many of which run local telephone helplines, as well as producing accessible newsletters. In Grandshire, there was a valued information service that provided both a helpline and a newsletter. However, such services only work if potential users know about them, so visibility and publicity are crucial factors in the success of any such venture. Some of the people we spoke with felt that what was really needed was a person to help people both to work out and access the support that they needed. Some organisations were seeing the need for specific support within their organisations to help people to access the services and support they needed. As one manager said: [We are] trying to develop something called a service navigator, where each of our members or clients have a project worker that’s their service navigator. So a project worker will hopefully get as much information about things that are available and they can help navigate the clients through. Manager

Such a task could be a specific role or part of existing practitioners’ work. In the charity, we’ve got an information worker who assists with questions or on phone enquiries or anything like that, regarding loads of different matters, or liaising with different services and knowing what’s out there. Not known 279

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How about as a suggestion a better form of advocacy for individuals so you don’t have to go through all the red tape yourself? That you have a worker who will come and say these are your rights, this is what we can apply for? It’s going to be difficult, but we start addressing that, so you don’t get the situation where the carer only does so much and then goes away. Not known People don’t have care managers any more, it’s difficult to find answers. Practitioner

Among the practitioners we spoke to, most had some element of providing information and advice in their job. Often key-working arrangements meant that individual workers had such a role with a number of designated service users. One of the services we worked with, saw such a role as an essential part of its work. As one of its managers said: Some people don’t know. This is what we’re there to do – to help people identify at each step of the way. They’ll reach one step and think, ‘That’s it,’ hence the [outreach worker] role is to get people thinking about what to do next. Somebody needs to do that little bit of encouragement. Manager

Improving engagement, building capacity This fits a wider and increasing awareness that people will often need support to negotiate the social care system successfully. While the 2005 Green Paper, Independence, well-being and choice, did not have much to say about the role of the social worker, it did use the term ‘navigator’, meaning someone helping service users find their way through the system (DH, 2005). In some ways, of course, this can be seen as a rebranding of the 1990s ‘care manager’ role, with the social worker pointing people to other sources of support, rather than offering it themselves. However, moves to person-centred support and selfdirected support have prompted more careful consideration of the assistance that people may need to access and retain the support they need. Such support can be seen as both a necessary component in advance of securing person-centred support, helping people access it and also as an essential part of person-centred support itself. This issue has been thought about in a range of different ways over time, with different responses identified. One such strand has been the development of advocates and advocacy during the last 20 or so 280

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years to help people get the help they need. Over the years a range of different approaches to advocacy has been developed, including professional, citizen, peer and self-advocacy, individual and collective advocacy. All are concerned with enabling people to secure their rights and meet their needs. A range of criteria for good advocacy has also been identified, including the need for independence, training and agreed quality standards, for it to be readily available and provided on an ongoing basis and not only at times of crisis or emergency (Beresford and Croft, 1993). Questions are also raised about whether social workers employed by statutory organisations or service providers, can themselves make appropriate advocates because they are not truly independent. Disabled people’s and other service users’ organisations have also been part of such developments and discussions. For example, as we mentioned at the beginning of the chapter, centres for independent living (CILS) pioneered the development of direct payment support services which helped people set up, run and organise self-directed support schemes, taking care of administrative and organisational tasks flexibly, according to what each individual service user wanted and preferred. Such schemes could both take on tasks service users didn’t want to, or were unable themselves to undertake and increase people’s skills and build capacity to take them on if they so wished. A related development was the testing of support roles, undertaken by people with shared experience, which organisations like the Derbyshire Centre for Inclusive Living explored, helping service users make their own assessments and identify their own support package. A parallel development which has gained greater visibility recently is the development of service ‘brokerage’ and the role of the ‘service broker’. Service brokerage, which originated in Canada, has been defined as: … a method of allocating and using public funds for people who require social support. It aims to increase their choice and control. An agreed sum of money is placed under the control of the service user and a service broker gives advice, information and practical help to the service user. The model is based on strong commitment to the rights of disabled people. (Dowson, 1995, p 1) Service brokers are not assumed to be the only way in which brokerage may be provided, but work is currently under way to clarify the tasks, skills, training accreditation, accountability and independence of the role (Skills for Care London, 2009). 281

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What all these developments have in common is the desire to enable people to access and maintain successfully the kind of support that they want which will help them live their lives as fully as possible in line with the values of independent living. They can be seen as a crucial prerequisite for the rolling out of person-centred support and selfdirected support – essential for any such system to operate effectively and inclusively.

Summary There are many barriers preventing people from accessing the support that they need. Some of these relate to the nature of services, some to service users’ circumstances and experience. This means that even a system based on person-centred support is unlikely to reach everyone who might benefit from it, unless there is support and capacity-building for them to be able to. This is one of the broader issues highlighted by participants in our project which is also reflected in other findings. Like much official policy, many people see the provision of more information, in appropriate and accessible forms, as a way of challenging such barriers. They think in this way people could find out more about their entitlements and what support would be most helpful. Many people just don’t know what support is available and how to get it. This makes it impossible for them to make informed choices. While suitable and accessible information has been advanced as a way of overcoming this difficulty, we also hear from practitioners how information overload makes it difficult for them to guide service users through the menu of services and the existing service system. It can be difficult both for service users to access support and then to negotiate it, even once they have found it, particularly if they face additional barriers or discriminations. Information through word of mouth seems to be helpful, but personal help in accessing support through staff, part of whose role this is, seems to be particularly valuable. Helplines and information services have a useful contribution to make in putting service users in touch with support. However, as we move to more person-centred and self-directed approaches to support, having help to navigate services and/or build personal capacity is becoming more important. A number of different ways of doing this have been developed, all of which can have a useful role to play and all of which are based on people offering specific support to service users. These include advocacy, service brokerage and direct payments/ individual budget support schemes. Each can help make person-centred

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support a realistic option for all service users, helping them develop their confidence and skills and making services more accessible to them. References Beresford, P. (2009) Self-directed support: If we are going to do it, let’s do it right, Report of a day conference organised by the London SelfDirected Support Forum, London: London Self-Directed Support Forum. Beresford, P. and Croft, S. (1993) Citizen involvement: A practical guide for change, Basingstoke: Macmillan. CSCI (Commission for Social Care Inspection) (2008) The state of social care in England 2006-07, London: CSCI. CSCI (2009) The state of social care in England 2007-08, London: CSCI. DH (Department of Health) (2005) Independence, well-being and choice: Our vision for the future of social care for adults in England, Green Paper, March, London: DH. Dowson, S. (1995) Increasing user control in social services: The value of the service brokerage model, Social Care Summary 4, May,York: Joseph Rowntree Foundation. Fleming, J. and Arches, J. (2007) ‘Building our own monument: a social action group revisited’, Practice, vol 19, no 1, pp 33-47. Hampshire County Council (2008) Getting personal: A fair deal for better care and support.The report of Hampshire County Council’s Commission of Inquiry into the future of adult social care, Winchester: Hampshire County Council. Skills for Care London (2009) The independent broker role and training requirements, London: Skills for Care London.

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Access to the mainstream We have our own mindsets and agendas. I will give you a classic example. I went on a visit yesterday to see a person with learning disabilities. [She] was with her partner. They had got gas heating and I said,‘How can we support you?’ and they mentioned central heating, and I said, ‘I work in social care.’ So when you think of person-centred approaches, it should be in a holistic way, but we work within service areas – and we have to overcome some of those barriers as well ... and mindsets ... (Manager) Standard Ten: AN holistic approach to people’s rights and needs

The achievement of person-centred support based on the philosophy of independent living demands equal access to mainstream life and services, as well as suitable support services, if it is to be consistent with the values of independent living. It requires an holistic approach to people’s rights and needs, rather than people still being expected to live their lives confined to care services.

The message of ‘independent living’ In the Standards We Expect project, we worked with a wide range of people who used social care and health services. Historically, as we have seen, there has been a tendency for such services to segregate and isolate those groups which come into contact with them, reinforcing perceptions of them as different and ‘other’. The two key components of the philosophy of ‘independent living’, developed by the disabled people’s movement have been concerned with challenging this. The philosophy lays an emphasis on both: 1. Ensuring disabled people the support they needed to live their lives on as equal terms as non-disabled people; 285

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and: 2. Ensuring disabled people equal access and participation in mainstream policy, services and life, alongside non-disabled people. Thus changes in dedicated support services to become more ‘personcentred’ also need to be considered in relation to broader change in mainstream policies and society, if they are to be consistent with the philosophy of independent living. People’s need for dedicated support is not a constant, but as we have seen, will also depend on the broader workings of society. So, for example, special transport schemes have traditionally been developed to compensate for the inaccessibility of ‘public transport’. Sheltered workshops have been developed for disabled people because of negative attitudes towards them in the labour market. How much support any individual needs will depend on how supportive or hostile their broader environment is. In the second part of the book, we learned more about the barriers in the way of person-centred support. In this chapter, we look more broadly at some of the societal barriers that affect service users and how these may be overcome. We pay particular attention to those which people themselves highlighted.

An holistic approach There has been a growing recognition among policymakers that social care cannot and should not be seen in isolation. Instead, the wide range of policies that may impact on people’s lives, need to be considered in relation to their needs and specific social care policy. This recognition seems partly to have arisen as policymakers have come to see social care as a policy with limited resources under increasing pressure. It is an acknowledgement and perhaps reinforcement of the limited role they see it as playing. This gave rise to the idea of ‘place shaping’. This puts an accent on local public authorities acting as agents to influence local policies, resources and organisations to meet the needs and maximise the wellbeing of all inhabitants (Lyons, 2007; HM Treasury, 2010). Another concept that developed under New Labour was that of ‘total place’ – harmonising public funding and resources in an area to maximise its positive impact on people’s ‘well-being’. Taken to its logical conclusion, such a policy approach would suggest that all state policies should be developed and monitored to take account of their impact on the rights and needs of all groups, including long-term health and social care service users. This clearly has not been the case in England, for example. Instead, we can see a 286

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wide range of policies, from the closure of local post offices, reductions in and the growing cost of public transport, increased reliance on private car ownership, the centralisation of shopping and amenities, the frequently poor maintenance of pavements, the failure to promote accessible housing, reductions in the library service, including travelling libraries and so on, all creating broader barriers in the way of the routine participation and daily lives of many service users. This has been compounded by severe and arbitrary cuts in public provision and services as a result of policies to reduce the public deficit, which have been associated with a particularly damaging impact on less well-off people, including disabled people and service users. As we have seen in this book and indeed as other research has also highlighted, people who use services do not see their lives in narrow service terms or think of them only in terms of their support needs (Beresford et al, 2005; Branfield et al, 2005). Instead as might be expected, they tend to have a holistic view of life and their lives. This is true even though the poor quality of support services and their frequently institutional nature, may inhibit people’s expectations and restrict their experience. Thus the barriers they face may include factors within social care, like the inflexibility of domiciliary care provision, but also frequently include wider societal barriers. For example, a day centre may be committed to providing good, person-centred support, but if the local transport links are poor and it is difficult for service users to get to the centre, then its contribution to their quality of life will be limited. Person-centred support points to a more holistic approach which takes a wider view of how people can live their lives on as equal and inclusive terms as possible in society. Such an holistic approach to people’s rights and needs is crucial, as Mark Priestley has observed in his discussion of disability and community care: A proper consideration of outcomes extends beyond the socially constructed boundaries of ‘service provision’ to include issues of citizenship, inclusion and equality in the wider world. (Priestley, 1999, p 168) As we have observed elsewhere: Many service users have needs which fall beyond the current limits of health and social care services. Looking at outcomes from service users’ perspectives involves taking a holistic perspective and taking into account issues such as housing, transport, employment, leisure, education and training, income and benefits, and broader 287

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issues around discrimination and equality. This is because service users come at quality from their overall experience of life, rather than being preoccupied with the particular roles and responsibilities of specific services or departments. (Beresford and Branfield, 2006, p 440) A manager of one of the services we worked with, made the point succinctly. People aren’t interested in services. They’re interested in what makes a difference for them. People don’t even really think in terms of services do they? It’s trying to understand what makes a difference overall and what we can influence and do something about, alongside what hard services you do need, to fill whatever gaps there are otherwise. Manager

This broader context and the barriers that may be associated with it, can also affect different groups and people with different impairments differently. Thus it is important to take account of both individual identity, broader social barriers and their interactions, as we will seek to do in this chapter. Such barriers deny people both their human and civil rights. Through the course of this book, we have already encountered many such barriers operating on people’s lives, denying them for example, the right to freedom from abuse, to live independently, to privacy, to material well-being, to have relationships, to live alongside non-disabled people, if they wish, to decent employment and the right to participation. There are also others which are now increasingly being highlighted, like the right to life, to access to information and to respect for family and home life. Here we focus particularly on three of the broader issues relating to rights and independent living that participants highlighted in our project. These are concerned with travel and transport, education and disability discrimination.

Transport Travel and inaccessible public transport have long been recognised as key barriers in the way of disabled people’s inclusion and equality. Since its inception, the disabled people’s movement has highlighted inclusive public transport as essential for independent living (Morris, 1993; Campbell and Oliver, 1996; Oliver, 1996; Oliver and Barnes, 1998). Service users are caught between the inadequacy of public transport and the failure of services and ‘special’ transport schemes to 288

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compensate for them. A study commissioned for the Scottish Executive to measure progress about this, concluded: There has been progress on many issues since 1998 but there are still areas of Scotland where there is little public transport which can be used by many disabled people. One of the key difficulties facing disabled people is uncertainty, for example relating to whether low floor buses or accessible trains will be available for all sectors of a journey, whether an accessible taxi can be guaranteed for return journeys, and whether assistance promised (or booked) is made available. This is a cause of stress, and a significant disincentive to travel. (Reid Howie Associates, 2004) Without access to transport, it is difficult for people to participate in almost any aspect of life, from leisure and recreation, to work and training. Our project suggested that while considerable progress has been made in improving the accessibility of public transport in recent years, major barriers remain. Service users highlighted these continuing barriers and the impact that they had on person-centred support. Transport is a big issue that the [name of disabled people’s organisation] hears about…. The one thing, I think, is getting no better, is transport. Service user

Lack of accessible public transport Participants frequently talked about the lack of accessible public transport. In some areas they mentioned improvements in bus services which meant that wheelchair users could use them. However, lack of reliability meant that it was difficult for people to have confidence in the service. Even on accessible bus routes, there was a risk that an inaccessible bus might turn up, or that essential equipment might not be working. I personally can’t go out on my own at home on public transport simply because 99% of the time the ramps don’t work. The drivers won’t get out and lift the ramps because it is a ‘safety risk’. A lot of buses … have got them, but they are either not working, or there is something wrong with them. I don’t feel confident if I went out on my own, that I would be able to get from A to B and back again, without difficulty. Service user 289

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You can’t rely on it, which is as good as there’s no point in having it. Practitioner This is a huge problem. [Locally, we have] wheelchair-friendly buses, but half the time they don’t work. The bus drivers are apathetic and unhelpful. Service user

People at one day centre talked about the scale of the difficulties that service users experienced with transport. They thought that these were mainly due to inflexibility and the negative attitudes of some members of staff. The inadequacies of mainstream transport are certainly not compensated for by special transport schemes. If you ask anyone who comes to the centre,‘Have you got an issue with transport?’, they would say, ‘Yes.’ It’s one service that isn’t member-led or controlled. I can’t say, ‘I want to leave on Wednesday afternoon at 3pm.’ I have to go at 2.30pm. I appreciate they have places to go and people to take, but if you’re doing a course you miss the last half hour. When some drivers [were] on holiday, it’s miraculous, because [suddenly] it [wasn’t] a problem. I don’t know if they want to get home for their tea…. We’re a captive audience…. That is probably the biggest issue here for everyone at the centre. Service user Because [this county] is so rural, the biggest issue we have is people accessing transport. Some of the workers here have made suggestions about how we could make it more flexible and change it, but it hasn’t gone down well with people in the transport department at the local council. Practitioner

Problems planning travel Some service users, particularly those living in residential services, spoke to us about the lack of transport and difficulties they encountered in making travel arrangements. Given that such services are often isolated, off bus routes and in rural settings, this can be a major problem. Problems with inaccessible vehicles and the need for forward planning to make travel arrangements, were typical of their experience. If you have the money, then fair enough. It’s just if you want to get out to the next town, you have to go in a vehicle and if you ain’t

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got a driver or a vehicle, which they don’t always have, you can’t do that. Service user It depends if people [staff] are sick or ill. If we are going out, we need to organise transport, a driver and we have to let them know as soon as possible. If we are going home or anything, we have to let them know. You have to plan a bit. You can have an escort and a driver. Service user If I didn’t have ‘Access to Work’ [which helps disabled people meet the costs to be in employment] I wouldn’t be able to go to work or pay for support workers at work. Pippin Close doesn’t have enough transport for those sort of needs really. They can’t allow carers to come with you or whatever. Service user Underground or buses in London. It is a nightmare. Some buses are OK, but you don’t know when they are coming. If they want to catch the train, they have to go to [another local town] and book it. Practitioner Sadly, I don’t think they have [improved]. I think some things have changed, but only very little things, not – wow this is a big change! Things like transport haven’t changed and it is still quite hard work to go anywhere. Service user

Rural travel Practitioners told us that travel problems were particularly acute for people in rural areas. It was often difficult to arrange and very expensive. As a result, many service users were severely restricted in their ability to travel on a regular basis. If you visit somewhere, if you are 10 miles from [name of town], you are pretty much stuck before you start. If you can’t get transport, there’s nothing you can do. You are pretty limited without transport. Practitioner It will cost you an arm and a leg and then you get someone who is really disabled, in that they require special transport to be able to get them from A to B, then Christ it is just exorbitant! So this is a very limiting problem we have in [name of county] where you have got so many rural areas. Practitioner 291

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Public transport. Lack of accessible public transport would take up a huge chunk [of your money] if you’re living in a rural area. Practitioner

Safety issues Some service users told us they felt vulnerable when they used public transport. This put them off using it. I wouldn’t go on my own. You don’t know what people are out there. I don’t trust those people. They might look friendly, but they might not be. Service user

This reflects the widely reported experience of people with learning difficulties (Taylor et al, 2007) and the growing recognition of ‘hate crime’ against disabled people. ‘Hate crime’ is emerging as a major issue for disabled people, including people with learning difficulties and one of its key sites is public transport. A study published by the Disability Rights Commission in 2007 found that one third of disabled people were either not very, or not at all confident about using public transport (Robinson et al, 2007). Case study Arbitrary restrictions on movement The extent of restrictions imposed on service users’ freedom of movement was highlighted by the experience of one young woman who lived in a residential home. She used a powered wheelchair. The wheelchair was classified as for indoor use, but she had used it extensively outdoors too, without problems. It was her only wheelchair. The previous year she was told she was not insured to use the wheelchair outdoors. Since that time she has been struggling to find a solution, with help from her family and the home. I understand it, but to me it feels like you are trapped. The only time I could get out, was to go to the bank to get money out.… I’m nearly in my twenties and it’s not fair. I should be out there enjoying my life, not indoors. I can’t even go outside. It’s just driving me around the bend. Can you imagine being in four walls 24/7, with nowhere to go? I want to do my course, catch up with my education. To me it is important…. It is a big thing for me. Service user

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Access to the mainstream One of the practitioners at the home, commenting on her situation, suggested that this was another problem arising from risk-averse service provision. Now that is health and safety! It is all to do with legislation. Wheelchair services [National Health Service] have come down like a ton of bricks because someone is suing them. She was using her chair indoors/ outdoors, but now they are saying it is only for indoors, because someone is suing them. Practitioner Thus a possible risk, instead of being addressed, was met with a blanket response that had a huge impact on a service user’s quality of life, dramatically restricting her independence.

CASE STUDY ENDS

Education Education is central to the inclusion and independent living of service users. Disabled people particularly, have highlighted its importance, stressing the value of inclusive education, the problems associated with segregated education and the way in which inferior educational opportunities result in disabled people having inferior employment opportunities (Oliver and Barnes, 1998, pp 42-3, 49). As Colin Barnes has written: The overwhelming majority of British schools, colleges and universities remain unprepared to accommodate disabled students within a mainstream setting. Thus, many young people with impairments have little choice but to accept segregated ‘special’ education which is both educationally and socially divisive, and which fails to provide them with the necessary skills for adult living. (Barnes, 1991, p 227) People with learning difficulties describe going on education courses that never lead to anything but an unprogressive loop of college attendance. The importance of education for the empowerment and consciousness-raising of both service users and the public has also been emphasised (Campbell and Oliver, 1996, pp 173-4). Education emerged as an important issue for participants in our project. They

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focused particularly on the barriers restricting their access to continuing learning, training and education. A group of young people living in a residential home had experienced a number of problems with physical access to local colleges. These problems had caused the young people considerable difficulties. Access is not so good – because you have to open doors. I have to have people open doors for me. You have to have stuff moved out of the way, sometimes because they are blocking where you want to get to, and that makes it really awkward. I think if they had electric [doors], I’d be fine. They are too heavy. If they had electric doors that would solve all the problems, like getting to class and that. I’d be fine. Service user

They explained that many improvements had been made to access as a result of their experiences. However, they said that it had been very difficult for them, causing stress and anxiety. College have now got a hoist which means I can stay all day which is good. Service user It has taken me a year and two months to sort the facilities out at the college. I can only go half a day now, so I’m only doing half a day from September and then they said they [will have] sorted it, but I have to check it. I was coming home in a mess. They had to put a stop to it eventually…. Because of this I have missed out a module on my course and I won’t get a certificate for it because of this. Service user In my college the ground is not wheelchair friendly. One day I went in my manual [wheelchair] and I only had a normal seatbelt and I was nearly – I was leant off the edge…. I was looking forward to it, starting a new fresh college course. Service user

The manager said that the service had supported service users to raise access issues with colleges on a number of occasions. Continuing problems made going to college difficult for service users. One new resident had experienced barriers enrolling on a course less than a term into the academic year. The manager attributed this to discrimination. I’m sure if that was a mainstream person, it wouldn’t be so difficult. Manager 294

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This wasn’t an isolated problem. Service users elsewhere had experienced similar problems accessing mainstream colleges. In one county, for example, colleges could not support service users who needed extensive support with personal care. They were restricted to the day centre which offered educational courses. Their chances of making progress in education or employment were curtailed. People can’t access the college because they can’t offer personal care, so it’s a next best thing. Some people have done virtually the same course year after year. It’s not supposed to happen, but they change the name of the course, so effectively it’s the same course with a different name…. There’s nowhere to move on to. They aren’t going into employment or anything like that. So they go back in, [saying] ‘I’ll go back there.’ Practitioner

Disability discrimination [Disability] discrimination is institutionalised within the very fabric of British society. (Barnes, 1991, p 3) Many participants referred to public and societal attitudes as a major barrier in their lives and work. This was a point made by both service users and practitioners. They felt that there was little understanding of the barriers faced by service users and a lack of understanding or awareness of disability. They don’t understand it from our point of view. They don’t know what it’s like to be a wheelchair user. Service user People in the city, they see disabled people and think ‘really scary’. We need more awareness, so that people accept them, and know they are part of the community. And building confidence within themselves, like with Deaf people they have their own clubs. I don’t see a lot of places where wheelchair users can go and have fun with other people in the community. Practitioner

These views do not seem to be unrepresentative. Research conducted for the Disability Rights Commission showed that three quarters of people felt that there was prejudice in society against disabled people (Robinson et al, 2007, p 6). Such discrimination operates both within the service system and in the wider world. A group of 295

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people with learning difficulties gave examples of discrimination they had experienced. This included being asked to leave a café and being told by a worker that they were only allowed one alcoholic drink at a Christmas party!

Access In Chapter Six, we heard how lack of accessible housing was keeping people in institutions. Lack of access was a problem for people both behind and beyond their front doors. Some people spoke about the physical barriers that service users faced and how they prevented them from having equal access in society. As one practitioner put it: I mean it’s no good just making the house adapted for someone to live in and become accessible, if they can’t get into their neighbour’s house, or get into the local shops, or get in the local pub and then they become isolated in that building that is adapted for their needs, but [can’t go] anywhere else. Practitioner

The inaccessibility of many amenities meant that service users were excluded from ordinary activities that other people could take for granted. Their human rights are not being met. Not only by the government, local councils, local traders. I’ll give you an example. Last night we wanted to go out for a meal. Three restaurants we tried to get into. We had two disabled people with motorised chairs, two [non-disabled] people among us. Three restaurants, no ramps, no lifts, no nothing. Carer/relative

The limits of legislation A small number of people referred to anti-discrimination legislation like the Disability Discrimination Acts of 1995 and 2005 as being a step forward. Many, however, expressed their frustration that legislation had not had as much impact as had been expected. They said it either did not have a wide enough scope, lacked powers or was just being ignored by many service providers. For example: Like we said earlier, about a law being put into place that says we should be getting the same rights, but it’s not being implemented. Service user 296

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One disabled practitioner who was involved in promoting access for disabled people was more positive about progress. Drawing on his own local experience, he felt progress was being made. The community as a whole is now coming to terms and taking on board that disabled people have a right to access opportunities and services. Practitioner

Unequal access to mainstream policy and life Our project made it possible for people from many different areas and different service user backgrounds to meet, share and compare experiences. This brought to attention additional difficulties and exclusions. When talking about broader barriers, they highlighted geographic inequalities and the specific exclusions faced by black and minority ethnic communities.

Geographic inequalities Participants identified significant differences and disparities operating between different areas. This has sometimes been presented in simplified terms as a ‘post code lottery’ operating in social care. It can be seen as part of a broader problem of inequity in access to both mainstream services and dedicated support provision. This was often associated with differences between town and country and rich and poorer areas. Participants referred to the varying availability of services across the UK, or even within a single local authority area. This could have a huge impact on equality of access. When service users from the different services taking part in our project first met together, some were surprised by this. Differences in the availability of provision was particularly noticeable between urban and rural areas. And also there is the problem of what services are out there. I have a family member who has a brain injury. He was a builder. He led a very active life. He had a heart attack and now he has short-term memory loss and … it has turned his life upside down…. It is just nothing in comparison to what they had before. Everything has changed and there is nothing … where they live, that can provide them with the service that he needs. Nothing that stimulates his memory. There is nothing. So you can sit and talk person-centred all you like. The services are not there. Not known

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Go out into rural areas as well, because there are more people out there who are left abandoned, like in terms of disabled. Go out to people who need the help. Not known We live in a very isolated area. There’s only six properties so we tend to get left out quite a bit. Service user

People identified particular difficulties in the way of recruiting staff in rural areas as one possible reason for the problem. I can’t get that [support at home] because of where I live. If you live rural, you got a barrier. There’s a barrier there and people don’t want to go out into rural areas at night and you can’t really blame them that they don’t want to do it. So my husband is left to do the lot. Service user Fuel prices are having a big impact on support workers’ willingness to travel to work. The rural nature of the area means people have to travel long distances. This is particularly a problem where people only need a little support, that is, the journey is too expensive for the time with the client. Manager

In some rural areas the lack of social care services reflected a broader lack of local services and opportunities, including shops, public transport and even employment and housing. It’s a constant struggle because of the environment and the geographical area we live in. We have problems reaching the isolated people. They are isolated and in a lot of cases they don’t see that they are entitled to any help. Manager [The nature of the county means that] if you live in the city you have more opportunities. If you live out in the country, you have to worry about how to get anywhere. Service user

The barriers for people from black and minority ethnic communities One of the services we worked with was set up specifically to meet the needs of service users with learning difficulties and their families from black and minority ethnic communities. This highlighted the additional barriers facing these communities and so we are drawing 298

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here particularly on this experience because it has so much to tell us about the problems facing people from black and minority ethnic communities and how person-centred support can most helpfully connect with them. Those involved in setting up this service in Downhampton had realised that many black and minority ethnic service users were not getting the support of local learning difficulties services. They wanted to build relationships with these families and work with them to develop suitable services. Families were often unaware that there were meant to be such services. This was particularly true for people born in other countries who had little or no previous experience of state welfare provision. Participants in our project also spoke of different understandings of learning difficulties among people from different communities. For example, they said that some Muslim parents viewed having a disabled child as a test of their faith. This is reflected in other research findings (Bazna and Hatab, 2004; Ghaly, 2005; Croot et al, 2008; Kramer-Roy, 2010). These families might be reluctant to seek or accept support, as they felt that they should find their own solutions. Families did not always understand the cause of their child’s learning difficulty and sometimes thought that it could be cured. Louise Downes has reported some of the barriers created for such families by the disadvantage they experience, making it more difficult to access what support there may be. BME [black and minority ethnic] people’s needs are the same as those of other ethnic groups. They are often exacerbated by low income, poor housing, poor health, isolation and the experience of racism. Those carers of BME people who have experienced racism in the past sometimes find it difficult to use services. Their past experience may bear no relation to the standard of current services. (Downes, 2007) Other studies, like that of Annette Broomfield, have reported how the failure of support services to address such barriers reinforces them for black and minority ethnic families. We, as BME [black and minority ethnic] families, experience additional obstacles, have higher levels of unmet needs and lower access to services and information. The interplay of race, culture, religion and disability has largely been ignored by many service providers, statutory bodies, voluntary and disability organisations. This includes both organisations of and for disabled people. The 299

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impact of racial inequality upon the lives of disabled individuals and their families, whilst central to our experience is relatively marginalised or ignored. We have felt invisible. (Broomfield, 2004) Workers in the Downhampton project said that given the major cultural differences that existed and the wide range of different communities, it was difficult to share information about services with black and minority ethnic communities. It was not just a matter of translating it into different languages, as ideas were different too. They felt that to overcome barriers, dialogue was needed. They felt that many black and minority ethnic families were distrustful of services and were unwilling to get involved with the council. If the idea of person-centred support was to have meaning for different ethnic and cultural groups, then much more work needed to be undertaken to bring it closer to all communities (Carr, 2004). I work very closely with the mothers. I would say the family carers – and the vast majority do not have English as their first language – a lot of them weren’t born in this country, so they don’t know how the systems work in this country. They have very limited life experiences here in terms of how things work and their idea of learning disabilities is quite different as well. So when we talk about person-centred support, it is very difficult as an idea really, because they often have children who do not have the same sort of experiences that their white peers will have, will go to the social club after school, or who will go on the regular holidays every year possibly. And they also face a lot of discrimination because their mums or their dads don’t have relationships with the schools and also because of the language barriers, they are not having services. So the person with the learning disability has very limited choices really, has a very limited outlook, because they spend their time either at the school or at home. Even the community isn‘t providing support. They don‘t necessarily go to the mosque. It is very rarely they do have those opportunities. So when we talk of person-centred support, it is going to be a long journey for those people. We can only think of dreams and aspirations if we have experienced them, or unless we have got the idea of the choices. Unless you know what is out there, how can you make those choices or think of those dreams? So it is going to be a big journey for them. Manager

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One manager felt that services and families from different cultural backgrounds feared and distrusted each other. You’re right, families are feared, but in terms of families we work with, they have fears of the system, especially coming from different cultural communities. Manager

A continuing lack of cultural awareness in local authority services hindered access to services for people from black and minority ethnic communities. Jabeer Butt and Alex O’Neil reported the same situation in their research with black and minority ethnic older people. The different groups said quite clearly that often the mainstream services do not meet the needs of culture, language and beliefs that are important to different minority communities. Sometimes this was about basics such as food, but at other times it was about a lack of knowledge and respect for religious beliefs and practices. (Butt and O’Neil, 2004, p 13)

Addressing ethnic and cultural barriers In Downhampton, to meet the needs of service users from black and minority ethnic groups, the ethnicity sub-group of the local learning disability partnership board helped establish a black and minority ethnic self-advocacy service. This was initially for men, but then a women’s and a carers’ group was set up. They saw this as the most effective starting point for engaging with people with learning difficulties and their families. They believed that the best way to reach people with learning difficulties was by building relationships and trust with their families. Disabled people were mainly supported by their families and lived very protected, insular lives. They felt that they could only be accessed through their families, so, gaining the trust of family members like parents, was seen as crucial. Now the groups of people I have worked with, a lot of them, haven’t received the services and we have set up a self-advocacy group and support group, largely of people who are Muslim men and a few women and a few other people from other communities. Now that is good for those groups of people, because they have got people from their own culture, they can have shared language and understanding. Manager

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I think it’s important to identify people who aren’t getting any services, especially if they’re hard to reach because of some of the things I’ve mentioned around language or culture, because if we’re not going to know about those people, then they’re not going to get any person-centred support at all and we’re going to run into bigger problems. Manager

They adopted a two-fold strategy to improve support for black and minority ethnic communities. As well as seeking to engage service users and their families, they worked to improve awareness and understanding among local authority and health staff. [Name of worker] is spreading information to the community about services. She primarily works with professionals to raise cultural awareness. This is largely with individuals, with a view to improving access to mainstream services, like health, like psychology. Progress is steady but slow. It is a learning curve. She is working on developing a staff handbook of cultural information. Practitioner

They deliberately adopted a slow and careful approach to setting up the services, taking small steps to build support as they went along. The self advocacy group, for example, had between 10 and 20 service users. It had both male and female workers who had got to know the members of the group well. The workers, who were themselves from black and minority ethnic communities, said that service users had very little experience of contact with white people, so there were significant issues about trust and how they reacted to white people who came to visit at first. The groups have offered a range of training courses, as well as an exercise club, a men’s group and have taken part in local partnerships and consultations. The group has taken on a role in improving access for people from black and minority ethnic communities to mainstream services. The group has been instrumental in bringing about the creation of a service for food for different cultures within day services. Manager

The carers’ group Members of the carers’ group described its purpose as helping families to have a ‘change of scene’. They saw it as a valuable contact point and 302

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source of information, as well as a place to meet, socialise and share their experiences with other carers. It attracted between 10 and 30 people to its meetings. Most were women and most caring for children under the age of 18, although some had adult offspring. The group’s worker assisted with interpreting at meetings, together with some of the group’s own members. It had built up relationships with local professionals through a series of meetings and workshops. Good qualitative interaction. Members got to know the professionals and professionals learnt more about the issues carers face. [The professionals] are more relaxed about working with the communities. Manager

It had also helped carers to access services that they had not had before. [Has the group asked for changes to be made to services?] Yes, to do with carers’ breaks. It wasn’t happening before. Now it is. The group had proposed that. Carer

Members of the carers’ group thought that the biggest barriers to using services were: • The unresponsiveness of services to individual needs. One carer said services seemed to think: ‘What we [service providers] decide, it must be that way.’ (Carer) • The failure of services to be culturally sensitive. We were told how a day service ignored one person who had specified Halal food as a dietary requirement. • Services taking no notice of what they are told. A carer said she was given a long form to fill in by the council about the help she needed. She filled it in, but heard no more. She said: ‘When you fill it in, you expect them to help in some way.’ (Carer) People running the carers and self advocacy groups highlighted the complexity of promoting independent living in different communities. They said that in many minority ethnic cultures, the family was seen as central. Parents expected to speak on behalf of their disabled children, so self-advocacy groups could expect to be challenged. Many people they worked with came from cultures where interdependence was emphasised much more than in mainstream UK culture.

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The project in Downhampton is involving ethnic minorities and what we discovered in Downhampton is that being independent for a lot of those people in those communities is perhaps not the same as traditional views, or our views maybe, of being independent. There’s a lot more involvement within families, family relationships are sometimes a lot closer. Manager

Summary This chapter reports on improving people’s access to mainstream services. This has long been identified as a key element of the philosophy of independent living. People don’t expect to live their lives within social care services. These neither can, nor should be expected to meet their rights and needs in isolation. Person-centred support demands a more holistic approach, which takes a wider view of how people can live their lives, on as equal and inclusive terms as possible in society. Participants highlight three particular areas where service users experience major barriers. These are travel and transport, education and continuing disability discrimination. They discuss the problems they face and how these can be addressed and overcome. The inadequacy and continuing inaccessibility of public transport, the frequent isolation of support services, particularly residential services and the failure of services to offer adequate transport of their own, combine to restrict many people’s lives, activities and opportunities. A case study of one young disabled woman’s experience highlights how extreme such restrictions can be. Disabled people have long highlighted the many barriers limiting their educational opportunities. Participants in our project particularly highlight lack of access to educational organisations and their frequent failure to provide support for disabled people. Disability discrimination is experienced as an ongoing problem, most often reported in terms of negative attitudes and continuing access problems. The impact of legislation is often seen as disappointing. People also highlight additional inequalities of access to mainstream policies and life. Geographic inequalities particularly disadvantage people in rural areas. People from black and minority ethnic communities report inferior access to services, both because of the lack of responsiveness of such services and black and minority ethnic communities lack of familiarity with them. A local initiative to involve service users and their families highlights some of the difficulties encountered as well as ways of addressing them, making

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clear the importance of person-centred support taking account of and responding to cultural and ethnic differences. References Barnes, C. (1991) Disabled people in Britain and discrimination, London: Hurst & Company. Bazna, M.S. and Hatab, T.A. (2004) ‘Disability in the Qur’an: the Islamic alternative to defining, viewing and relating to disability’, Disability studies: Putting theory into practice, 26-28 July, Disability Studies Association. Beresford, P. and Branfield, F. (2006) ‘Developing inclusive partnerships: user-defined outcomes, networking and knowledge – a case study’, Health and Social Care in the Community, vol 14, no 5, pp 436-44. Beresford, P., Shamash, O., Forrest,V.,Turner, M. and Branfield, F. (2005) Developing social care: Service users’ vision for adult support (Report of a consultation on the future of adult social care),Adult Services Report 07, London: Social Care Institute for Excellence in association with Shaping Our Lives. Branfield, F., Collins, J., Beresford, P. and Fleming, J. (2004) Proposal registration form:The Standards We Expect, London: Shaping Our Lives. Branfield, F., Beresford, P., Danagher, N. and Webb, R. (2005) Independence, wellbeing and choice: A response to the Green Paper on Adult social care: Report of a consultation with service users, London: National Centre for Independent Living/Shaping Our Lives. Broomfield, A. (2004) All our children belong: Exploring the experiences of black and minority ethnic parents of disabled people, London: Parents for Inclusion (www.parentsforinclusion.org/webreviewq.pdf). Butt, J. and O’Neil, A. (2004) Black and minority ethnic older peoples views on research findings: An exploration of how research can bring about changes in the lives of black and minority ethnic people, York: Joseph Rowntree Foundation. Campbell, J. and Oliver, M. (1996) Disability politics: Understanding our past, changing our future, London: Routledge. Carr, S. (2004) Has service user participation made a difference to social care services?, London: Social Care Institute for Excellence Croot, E.J., Grant, G., Cooper, C.L. and Mathers, N. (2008) ‘Perceptions of the causes of childhood disability among Pakistani families living in the UK’, Health and Social Care in the Community, vol 16, no 6, pp 606-13.

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Downes, L. (2007) Black and minority ethnic carers access research project, Bath: Bath and North East Somerset Council (www. bathnes.gov.uk/BathNES/healthandsocial/carers/Blackand MinorityEthnicCarersAccessResearchProjectReport.htm). Ghaly, M. (2005) ‘Islam en handicap: theologische perspectieven’ [‘Islam and disability: theological perspectives’], Theologisch Debat, pp 20-3. HM Treasury (2010) Total place: A whole area approach to public services, London: HM Treasury and Department of Communities and Local Government, March. Kramer-Roy, D. (2010) ‘Occupational injustice in the lives of Pakistani families with disabled children in the UK: a participatory action research study’, in F. Kronenberg, N. Pollard and D. Sakellariou, Occupational therapies without borders – Vol 2, Towards an ecology of occupation-based practices, Edinburgh: Elsevier-Churchill Livingstone, pp 385-92. Lyons, M. (2007) Lyons Inquiry into local government: Place-shaping: A shared ambition for the future of local government (www.communities.gov. uk/localgovernment/localgovernmentfinance/lyonsinquiryinto/). Morris, J. (1993) Independent lives: Community care and disabled people, Basingstoke: Macmillan. Oliver, M. (1996) Understanding disability: From theory to practice, Basingstoke: Macmillan. Oliver, M. and Barnes, C. (1998) Disabled people and social policy: From exclusion to inclusion, London: Longmans. Priestley, M. (1999) Disability politics and community care, London: Jessica Kingsley Publishers. Reid Howie Associates (2004) Transport provision for disabled people in Scotland since 1998, Edinburgh: Reid Howie Associates (www.scotland. gov.uk/Publications/2004/07/19591/39825). Robinson, C., Martin, J. and Thompson, K. (2007) Attitudes towards and perceptions of disabled people, London: Disability Rights Commission. Taylor, J.,Williams,V., Johnson, R., Hiscutt, I. and Brennan, M. (2007) We are not stupid, People First Lambeth, London: Shaping Our Lives.

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Participation The way that we work with people, because we consult with them, and address their concerns, it gives them the confidence to think, ‘Actually I can change things. I will make a difference.’ (Manager) Standard ELEVEN: Participation

Service users should be centrally involved in the planning, development, management, commissioning and evaluation of services and support. This should be made possible for all service users, addressing diversity and including people with all forms of impairment, addressing physical, communication and cultural access requirements. This demands support for both individual and collective involvement, including the adequate resourcing of service user controlled organisations.

Introduction Public, patient and service user involvement and engagement have come to be seen as key to modern public policy and services. Social care has been at the vanguard of these developments. There have been provisions for consultation, comment and complaint in social care for both adults and children since the early 1990s. The disabled people’s movement has long emphasised the importance of participation in a framework of rights and emancipation. As Clare Evans has said: It is important to us that our involvement is based on our terms and within a background of rights: the rights that we have as citizens like any others – the democratic right to participate in society and the right to have choice and control over our lives – which must mean that we have as much choice and control as we can over the services we receive. (Evans,1995, p 116)

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The Care Services Improvement Partnership (CSIP), established by government to improve social care, urged services to involve service users in making improvements. It is vital to listen to and involve service users and carers who are the ‘experts by experience’. They can very often identify small changes or service improvements, which make a big impact. (CSIP, 2008, p 32) The government Green Paper key to the development of personalisation, took this further, pressing for greater service user control as well as participation. We want to give individuals and their friends and families greater control over the way in which social care supports their needs. We want to support carers to care and individuals to live as independently as possible for as long as possible…. Social care should be about helping people maintain their independence, leaving them with control over their lives, and giving them real choice over those lives, including the services they use. (DH, 2005, p 6)

Power Disabled people and other service users have advocated a rights-based approach to involvement, in line with the social model of disability and which takes account of issues of power in participation (Oliver, 1990). Service users’ involvement and right to self-determination are at the heart of the four principles that Jenny Morris identified as underpinning the philosophy of the independent living movement: • That all human life is of value; • That anyone, whatever their impairment, is capable of exerting choices; • That people who are disabled by society’s reaction to physical, intellectual and sensory impairment and to emotional distress have the right to assert control over their lives; • That disabled people have the right to fully participate in society. (Morris, 1993, p 7) Disabled people and their organisations have been clear about what participation means to them. 308

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For the disabled people’s movement, true participation means much more than simple consultation. Rather, it implies the development of real partnerships in the organisational management of change. (Priestley, 1999, p 159) The only reason that disabled people have gained power and status in this country has been by coming together in our own organisations and going through the process of liberation. (Campbell and Oliver, 1996, p 194) Shaping Our Lives, the national service user network believes that user involvement means service users setting the agenda. There is a big difference between feeding into someone else’s ideas and organisations and developing your own. This distinction needs to be recognised. The first approach can be a very individualistic exercise, requiring no more than that people fill in a form or go to a meeting. But the second represents a new departure. It means people getting together and working things out for themselves and developing their own agendas. (Branfield and Beresford, 2006, p x) Not only has there been a groundswell of support for greater participation in policies like social care, but discussion, developments, research, theory and requirements for such involvement have mushroomed over recent years. There is now a plethora of typologies and tool kits for such involvement and numerous occupational roles have been established to advance it. User involvement sits at the heart of any person-centred approach to support, as of course it does the philosophy of independent living which underpins person-centred support. Participation is not only a prerequisite for person-centred support, but it is also difficult to see how any system that is intended to deliver it, could operate without effective user involvement at every level and in all its aspects. This certainly was the strong view that emerged from our project. Participation was an issue that people particularly highlighted and constantly returned to. However, while terms like involvement and empowerment have become political mantras in public policy, frequently repeated and constantly highlighted, the picture painted in our project, based on first hand experience, was of participation that was often very limited and patchy. People’s comments highlight serious problems in the 309

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way of effective involvement, as well as helpful examples of positive involvement and ways of taking this forward.

Barriers to involvement The quality and degree of user involvement not only varied enormously between different sites. It also did not necessarily match the scale of rhetoric or formal structure for involvement in each of these services.

Lack of involvement Service users not only spoke sometimes of a lack of involvement, but also of significant changes taking place in their services without their involvement or even any consultation. This had led to frustration and anger and for one group, considerable distress. They just come in and announce a change and there’s not been any consultation on it and it’s just introduced. Service user When we were first offered the property [to live in], we were told that there was no pets allowed and then all of a sudden, no consultation or anything, people were moving in with pets and I complained about it and they said,‘Oh we changed our minds, you can have pets now.’ But that’s not good enough because some of us had to go out and get rid of the pets we had and then as soon as somebody else comes in, they change the rules. So this is the sort of thing we should be talking about, rather than maybe it being introduced without any consultation. Service user I had been going to a centre for two years, for three days a week and someone just came in one day and said,‘You’re not going there anymore, any of you.’ Somebody just came in and sadly made a lot of them cry because they came in quite blunt,‘You’re going, you’ve got no option.’ But didn’t really explain to us why…. Four people died after that because they took it quite bad. We were promised we were all going to stay together and we never did. We were all separated. We weren’t really consulted on it, or told why this was happening and it just came as a shock to everybody…. And I think they should consult people. The top ones should think of the people and how hard on them it actually is…. They didn’t really tell us the truth. We just got told we had to go. Service user

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Lack of support for involvement Many people spoke about the failure of organisations to offer adequate support to ensure the equal involvement of all service users. They complained that they did not meet their access requirements or make allowances for service users different needs, arising from differences in circumstances and life experiences. Arrangements for involvement excluded many people and often resulted in unpleasant and alienating experiences. Almost without exception, service users reported that they had found the experience of being involved negative. Practitioners and managers also reported shortcomings in processes for involvement. I have noticed that people invited to such meetings can feel very intimidated. Language needs to be used that is appropriate, because I think for some people, being in a setting like that, can actually be very emotionally challenging…. The people who are used to going to these sorts of meetings, they don’t think about being welcoming either. They just presume that you are going to fit in and know about committees and agendas and putting things on the agenda and all those sorts of things. Not known I think in my experience involving service users can be a bit fraught. I think very often there should be a lot of support provided because they may be going into situations of people who are very articulate and with people with mental health problems maybe particularly – I am just talking from my own experience – actually it can be extremely intimidating and can trigger a lot of problems being in situations that maybe have been, you know, maybe as a child or whatever has been very uncomfortable for them. I do think there needs to be a counselling-type support often and not that just people are expected to go in there and feel comfortable. Not known It’s about how they’ve done their consultation and who’s done the consultation, because you find the same people volunteer and always get involved. It’s the same opinions that get spouted. Trying to make it more accessible, de-jargonise it, making it accessible to the ordinary Joe on the street to realise they can come along and can actually have a voice – and things like wheelie bins will be discussed. Practitioner

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I think you run the risk then of it is only like a token presence, which is extremely patronising and quite destructive I think. Not known People have been involved in the consultations and stuff, but it has been over a number of years. Everything has got very jargonised and we found that a lot of people – although it was set up to give people a voice – it was a very alien environment for a lot of people. Not known

Resistance to involvement Some service users and carers thought that managers and organisations were resistant to user involvement. We hear political statements all the time, ‘We must listen to what people are saying’. But in practice it doesn’t work out as we would like it to. There’s a great resistance at local level when the voice of the people is heard. Carer Once you ring up, it’s like banging your head against a brick wall and there’s a layer of management that tries to stop anything coming up from below to penetrate the upper echelons who run the social services and all the other stuff and it’s very much like a struggle. Service user They’re not actually coming down to our level. It’s more information from up there to down here. We should all be working together, instead of having one higher one and lower one. Service user

Some practitioners held the same view, feeling that managers were distant from them, as well as service users. There is no way it [the service] can listen to us. There is no system, apart from supervisions, for management to listen. There is a system in place, but it needs to be tightened up…. There is a big gap between the managers and workers, as I see it…. They will agree if they are happy with our suggestions, but how can they be happy with our decisions if they haven’t seen what is going on downstairs [with the clients at the centre]? Practitioner My organisation has just come through a restructure and we’ve now got service users on every level and it causes problems from 312

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a conservative point of view and from a managerial point of view, people aren’t wanting them there. I’m employed to manage this service. Manager

People felt that many organisations were reluctant to face the challenges that came with involving and empowering service users. They were sceptical that services were willing to bring about changes to work more openly with service users. It is a lack of empowerment and the lack of desire to go along with empowering people, because they know that when they are empowered, they will be a challenge maybe that they feel they can’t meet. Practitioner Absolutely nothing happened, because it wasn’t what the powersthat-be wanted to hear. Manager

Others highlighted the gains to be got when managers and services did involve people effectively. The whole point is to get kicked from the centre, rather than kicked from the outside. Manager

In one area, over time, a group of older people funded by a local authority, had begun to challenge its policies for older people successfully. You don’t know what child you have spawned here because believe me, it is going to develop in ways you have never thought about. Carer

Inadequate involvement We heard from many people about the inadequate approaches adopted to involve people as service users. They highlighted a range of unhelpful techniques employed, whose shortcomings have long been documented (Beresford and Croft, 1993). Two younger service users told us that they were regularly sent questionnaires to gain their views, but these were difficult to understand and uninviting to use.

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A lot of [the] questionnaires are very long-winded and you don’t kind of know what they are saying. Service user Sometimes I fill it in, depends if the questions are interesting. If they are, I’ll answer them. Service user

Formal meetings Some service users were put off by the formality of meetings and found it hard to say what they wanted to in those circumstances. The manager of one service said they had moved from holding residents’ meetings to having coffee mornings. These created a much more comfortable atmosphere for people to speak. We found people would come to the meeting and want to say something, but would go away without saying anything. But now we do it more informally. Manager

Larger meetings can be difficult for people who are not used to them. One person with learning difficulties explained how she felt when a meeting to discuss her future plans included eight people. It’s quite daunting. Sort of like you feel intimidated. Service user

In Downhampton, service users were involved in both sub-groups and full meetings of the Local Disability Partnership Board. However, a practitioner raised concerns that despite making some efforts to improve access (like using traffic light symbols to help give people an equal chance to speak), the meetings remained complicated and inaccessible to service users. The language and ideas were frequently managerial and complex. Practitioners spent time with service users preparing for meetings and minutes were produced in plain English with symbols. However, service users found the language used at meetings difficult and not surprisingly, lost interest. I’d like to change the meetings. Sometimes I get bored. It’s difficult to understand what people are saying. Service user

Inadequate timescales Sometimes, particularly with consultations, sufficient time wasn’t allowed for involvement. Many service users need time to arrange 314

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support to attend a meeting, or need a supporter to go through information with them before a meeting or prior to completing a questionnaire. Put simply, hurrying involvement excludes people. It can leave them feeling undervalued, as if their involvement was an afterthought. Participation could also be difficult for overstretched practitioners and managers. They sometimes involve us, but the deadline is tomorrow! The timescales are very tight. Practitioner

One practitioner offered a cautionary example of ‘involvement overload’, a problem increasingly highlighted by service users, as requirements for user involvement have multiplied. Yes, sometimes the clients are inundated with it. There’s a lot of paperwork that comes from New Chance to the clients. Sometimes it is a problem. I have one client who files all the paperwork. She has only been with us a year and she has masses of the stuff. You can see the point basically. New Chance does try hard to involve its clients in planning the services. But at the same time, some clients get a bit fed up with it because there is a lot. Practitioner

Fears from involvement A few people expressed worries about potential repercussions from speaking out. They were concerned that expressing critical views could single them out for retaliation from workers, or negative treatment from managers. This concern could lead to participants not being honest and open during a consultation, or deter them from taking part. Sometimes people are afraid to speak out because they are in fear it will jeopardise their opportunities. Service user

Lack of feedback Most of the service users we spoke to had been asked for their views in consultations. They said that this took time and energy and as we have already seen, could create personal and practical difficulties. At the same time, there was widespread frustration among service users about the lack of feedback they received from services following such involvement. 315

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Disabled people need feedback. What happens to our ideas? Service user We go to a lot of meetings and you are discussing things and you never hear anything about it afterwards. You never know where that discussion went, or what did head office think to it, what they had to say about it, what is going to be done about it? So very often you feel, I have just wasted my time going to it. Service user We all spoke up and told them what we want. So far we have not heard from them. We are not sure whether they have heard us or not. This was three months ago. Carer/relative We go round in circles about this, because we don’t get an answer about it. Service user

Service users expected their views to be listened to and valued as the voice of experience. They wanted to know what difference they made, what action was taken and how they were used. If things aren’t possible, then explanation needs to be given as to why. Service user If you’re asking service users opinions on things, to do it consistently and to make sure that changes from their feedback are made obvious to them, so that service users can see that they are a big part of the service and if they are asked for their opinions, it’s not just a question, the information is going to be used and they can see that they are valued and that the information has been taken forward. Not known

However, rather than feeling valued, many people explained that they ended up feeling that being involved in consultations was a waste of their time. But we do need feedback all the time. We could contact them, but why should we have to go on the phone? Why should we have to go round to their buildings? We have got our own life of where we are and the best we can make of it and we haven’t really got time to go to an office to say, ‘Give us the feedback.’ They should be sending it to us. Or on the day itself there should be … feedback before we leave. It would be much better. Service user 316

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Most practitioners said that people using their service were consulted and had opportunities to give their views and opinions. But some expressed disappointment that involvement did not bring about change. I feel awful. [The consultation exercise] perceptibly raised expectations, but delivered nothing. Practitioner

Case study How not to do ‘involvement’ At the Glen Trust there was much discussion about involvement and feedback. Over the last 10 years, there had been several consultations and involvement exercises at the Glen Trust to find out service users’ views about current services and what they wanted in the future. The most recent was known as the ‘lifestyle review’. Service users and practitioners both felt that they had been left in the dark after these consultations. Everyone knew there was to be change, but not how this change would effect them personally. This led to feelings of fear and insecurity among many of the people we spoke to. Service users said: [The service director] could tell us what is happening within the Trust, which may affect the residents. We don’t know what is going on and if there’s any change, we don’t get to know. It’s all hush-hush. There is no information coming back to us from the top. Service user [We feel] in the lurch, being made clowns of. We haven’t been told what is in the report. We would like to see it. It concerns us. It involves the individual residents. It’s a standstill at the moment. It should be brought down through the ranks. Service user One service user gave an example of the failure to give feedback. After an exercise to find out where service users would like to live in the future, a presentation about the findings to a group of service users’ family members was organised by the Trust. Service users were not invited and no presentation was made to them. The meeting was held in the communal lounge of the residential home. We weren’t invited. Why? It’s our lives. They can’t do anything without us. What did they say to our parents? We don’t know. We

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Supporting people felt disappointed. Why couldn’t we go in? It’s our lives and our future. People discuss things about us without us, without our consent. Service user The manager who made the presentation offered this explanation. Well, we will [tell service users]. But this process was about individuals. If we go and present to the residents for example, we’re just committing the sin again of ‘You’re a group of people. You must all make the same decisions’. This is a person-centred approach. What needs to happen from here is a lot more PCP [person-centred planning] work with those individuals. Picking up what they said during the lifestyle review and taking it forward. Manager There was a great sense of frustration among both service users and practitioners about the lack of change resulting from the consultations held. Practitioners working at the service said that they had regular staff meetings and were asked their views, but that change did not necessarily follow from what they said and they were given little information about the process of change. Sometimes you can make a suggestion and you can get positive feedback immediately why that won’t work. Fine…. Sometimes it’s, ‘We’ll look into it’ kind of answer and perhaps it doesn’t get looked into, does it? Practitioner We don’t really know what’s going on. We know it‘s going to change, and people will move out, but how soon, we don’t know. It could be next year. It’s daunting. That’s just a few months away. Things could just happen. That’s scary for us. Practitioner People are saying, ‘Why the wait? We have been telling you for a long time what we want. How many times do we have to keep telling you? When’s it going to happen?’ It’s really what puts you on the spot, because we really don’t know…. Rumours are rife. Practitioner Practitioners faced daily questioning from service users, but were not able to answer them fully. They wanted to reassure service users and offer information, but they didn’t know enough themselves to be able to.

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Participation We were kept in the dark here…. Silly little rumours go around, like a Chinese whisper. [Name of manager] lets us know what he knows – or what he wants us to know! Practitioner We were meant to do this three years ago. It was going to be transformed. They were going to have their own bed-sits, but then funding and various things … and it didn’t happen and they were all geared up for that. Practitioner Senior managers seemed to take a different view, preferring to keep things to themselves. You can please some of the people some of the time. It’s very difficult to give them anything concrete at this stage. The best plan is not to talk too much about what is going on. Manager It’s the scale of it that I’m concerned with. We have met with families and explained that we haven’t decided anything. As soon as you mention change, people want to know what it is. Manager Their approach to managing change appeared to be to keep quiet about it. [I don’t want to] panic people, so they all bugger off overnight; [pause] not that there’s anything to panic about. Manager We are discussing options at this stage, not nailing it down…. What happens to the voids, that vacant room? How do we decant individuals, at what stage do we decant them? Manager Managers of individual homes meanwhile, were trying to manage the expectations of service users and plan ahead, without having a clear idea of what the future would look like. Some residents are ready to move. They are making lists for their housewarming parties. Manager It’s the great unknown at the moment. This is the difficulty. Manager As we were completing this project, negative reports about the major changes proposed by the Glen Trust appeared in the local press. Neither service users nor their families had been involved in this process of change and the

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Supporting people Trust then took a considerable time to make any kind of public statement explaining or offering reassurance about what they were planning.

CASE STUDY ENDS

The lack of change from involvement People in our project saw change as the primary purpose of user involvement. That’s why they wanted to get involved. As a result many questioned the involvement they had actually experienced, because they did not feel it had been acknowledged or acted on. They said that services knew they were supposed to involve service users, but often were not committed to approaching it in an honest and serious way. Consultations were often held after decisions had been made and used to rubber stamp preset plans. Very often I find people have decided in advance what the money is going to be spent on. So you can ask until you are blue in the face, but if it doesn’t fit with what they have planned you are not going to get it. Service user There is a really big buzz word about client involvement and that’s a really big new initiative. Loads and loads of energy went into it. I have a feeling that from a lot of our clients, tenants, service users, whatever they want to be termed, was that they felt that lip service was being paid to them. Not known They’re doing a consultation, but the reality is they already know what they want. I find it really embarrassing that they spend a lot of time and money getting people together, to find out what they have to say, only just to use it as an excellent excuse. Practitioner The decision-making happens somewhere else and that’s just a kind of gloss on it that people feel they need to do. It’s either if it backs up the decision that’s already been made it’s going to be used to say we consulted and this is what people say. Practitioner

Many service users felt very frustrated at the lack of change following from their involvement. They felt that nothing had been achieved; that nothing had changed despite their efforts. 320

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It’s true. You bring something up and you do get ignored…. You go to the meetings and you don’t get anything done. Service user You report things and they give you a date, but nothing is ever done right…. I’m actually on a residents’ action committee for [name of housing association]. I take the complaints. It goes up to another level. It goes from there [pause]. It’s like going round in a circle. Service user I get frustrated…. For the last two or three years, I’ve gone to meetings and meetings and they’ve said this, that and the other – and nothing’s seemed to materialise. Carer/relative

One service had recently carried out a high-profile rebranding exercise, but service users had not felt involved. We sort of half relaunched our name a couple of weeks ago. We have had packs and badges and all sorts and I had to do a talk to the young people about what the new name would mean. And one of the young lads here came back to me afterwards and said, ‘Jane, you can have your badge and you can stick it up your arse, I don’t need a badge to tell me I’m disabled.’ Manager

Another service user said that even making a formal complaint didn’t seem to have any visible outcome. I sent my complaint in, but they didn’t say a thing. Service user

Some participants, however, did give examples of services that had listened to service users’ views and acted upon them. We discuss this below. Where this happened, it had a particularly positive impact.

The slowness of making change Even where there was change, it was slow. Many participants spoke of how long it took to make change, even modest change in services. They stressed how slow services often were to take action, even after being told of the need for change. Now if you contact services, they respond to you by writing a letter and say they have got your request, but the delay in receiving services continues. Carer/relative 321

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Oh yeah, he’s [new service manager] good. He’s only just been over us about a year. He has done more things for us than any one has before. But it takes a long time for him to do things. Service user I have had good ones where they have been very prompt about sorting things like my bathroom and bedroom. But I think I waited nearly two years to be able to get care at the weekend, to get personal care at the weekend, for my mornings to get up and get dressed, and showered and such. And I used to have to get up at five o’clock in the morning, so my husband could do me before he went to work and I didn’t really want to get up a five o’clock in morning! I would have liked a good two hours more! And again it was keep pestering, you know and like I said, it took nearly two years to sort that out. Service user

Such long waits for anything to happen, had a deterrent effect, operating as a process of attrition. Many people would simply give up, because trying to get a change was just too difficult. When you are having difficult times and you’re vulnerable, they expect you to be a super person to cope with it…. And I think that this thing about giving up or keep on pestering. The truth is that it’s easy to say it, but they make you so you have to and they know that only so many will be able to because it’s such hard difficult work going on. And I think that’s very cruel. Service user

Helpful approaches to user involvement Participants in our project shared from their experience a number of principles and approaches that made for better user-involvement. While their comments reveal little that is new or unexpected, they offer further confirmation of evidence we already have about what makes for good user involvement, from a wide range of service users, in a diverse range of service settings. They also emphasise the fact that there is still much more to be done.

Regular involvement Participants were clear that the best way to improve services and make them person-centred was through the sustained involvement of

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service users. This confirms findings from service user research about participation. One of the basic lessons to be learnt has been that user involvement cannot be a one-off activity if real change is to be achieved. (Barnes, 1993, p 134) Ongoing involvement means that services can develop a culture of listening and base what they do on service users’ views. Such involvement and listening need to be everyday, ongoing activities. Involvement becomes a way of working, rather than a periodic exercise. This approach reminds us of the importance of values in person-centred services, which emerged earlier in Chapter Two. There is also a need to change the behaviour of front-line providers – doctors, community nurses, social workers and day centre workers – so that their practice enables participation in decision-making at an individual level. Collective consultation cannot be an alternative for partnership between providers and users in their day to day encounters. Partnership at this individual level is also important to ensure that the majority voices which may be heard in collective discussions do not determine the change agenda for minorities who may have different interests and needs. (Beresford and Harding, 1993)

Involvement from the start Ideally this process begins with the commissioning and development of services, as well as their ongoing evaluation and improvement. This is in strong contrast to the hastily planned, one-off consultations we heard about earlier in this chapter, which are unlikely to result in helpful change. Involve the service users in planning services and monitoring services to help them change and involve them in training staff. Involve, involve, involve! Don’t just ask them once. Involve, feedback, keep them interested. Manager I think user involvement is getting there. You know, it’s as simple as a questionnaire or a discussion group, but making it something that’s done regularly…. We are very good at getting information from our users about how things are going now, but we’re not good 323

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at doing it regularly, you know – doing it every couple of months or whatever, and constantly looking at it – we made these changes, have they had an effect, the effect that we hoped for? So we’re not very good at keeping that at the forefront, that you constantly want to know what the users think and want and we think we better do this quickly. So I think that is one thing that could be made better, just a regular feature of our work. Manager

Involvement at all levels A few people spoke about service users being involved at every level of the organisation, alongside managers and practitioners, so that their views and perspective influence the whole organisation. One of the things that we are looking to get going is a representative model, so that people who use our services have representation at the different meetings and groups that already exist where plans are being made about how we provide our services, or decisions are being made about the future services that we provide. So we are just looking to get that going. Not known

Effective involvement in decision-making structures A crucial aspect of sustained and meaningful involvement is for service users to be effectively involved in decision-making bodies. This must mean much more than having a token representative. It will also have access implications and ramifications for how such bodies do their business. And the fact that we have got service users on our partnership board, that in itself has influenced the whole way in which the partnership board works in terms of we present things in a much more straightforward way. Which I think cuts to the issues much more than if it is professionals just talking jargon. So I think there are things that we can see are beginning to influence, but we have still got a way to go. Manager

Bringing service users together Some people commented on the importance of enabling service users to come together to meet and share experience. This had the benefit of enabling them to develop a collective voice and perhaps even take 324

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collective action. A variety of forums were mentioned, from residents’ meetings at residential homes, to regional meetings of disabled people. Some forums were organised by particular organisations. Others had a broader involvement. They were valued as a means of exercising a collective voice. They offered a way of bringing about change, and providing an alternative to individuals complaining. How do [disabled or older people] make a complaint or bring about change? What is available to help people bring about change other than making a formal complaint? In [Grandshire], they are trying to set up forums to try and get into this area where people can be represented and speak forth. I don’t know what is happening in the rest of the country, but it is even taking a long time because of the bureaucracy in [Grandshire] to get it off the ground. Practitioner

In contrast to this experience, one service we worked with, supported service users to set up their own groups. This enabled a sense of ownership and control, as well as involvement to develop. It is an approach that started from the beginning of their work with service users, with the aim of creating groups that were self-sustaining in the longer term. You need to have a couple of core people who will take responsibility for running the group. It takes sometimes six months to develop that self-support and more and more, they are taking control for what the ideas are, what they are doing and making their own rules. And if you develop that from the outset, this is what we want, where we want to be, eventually down the road – if they feel confident enough to take over. Practitioner

The importance of openness Many service users stressed the need for managers to work openly and inclusively with service users and practitioners. They felt they needed to listen to and understand the perspectives of both. I think the people at the top ought to meet the people that they work for and talk to them, what do they want out of it? Service user

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I think that management should have to listen to service users and practitioners, maybe be in their shoes for the day, rather than just calling the odds. Service user

Older service users of one residential home highlighted the benefits this brought them. They are doing their best to improve and they are very open to suggestions from us. We are in contact with them the whole time. Older service user Tenants’ meetings give us our platform to speak. Older service user

Using legislation One service user spoke about the impact of the recent Mental Capacity Act on her service which worked with older people. In that [time] since the Mental Capacity Act, there has been a radical change from a user perspective. We have learnt and are learning, to make our voices heard and … there have been changes, in Camchester anyway – a real desire to listen to what we say. Not that they’re asking … but we’ve got to keep that voice though. And I think we have a responsibility to future generations – I don’t want to be too melodramatic – to make sure that services are improved by people listening carefully to people who use the services. Service user

The involvement of practitioners Carers and workers talked about the need to involve practitioners in decisions that affected services and support. They felt that their experience should routinely be valued. This could make it possible, for example, to think through and anticipate any unintended consequences of proposed changes in advance of their implementation. I think the top should start listening to the care workers. They’re the ones that are on the ground. They know the patients, know the people they’re working with, day in day out and they’re the people that know how to put forward what these people need. Carer/relative 326

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Because we anticipated everything, but we said ‘What if this, what if that?’ We discussed it as a staff group, we were prepared for everything and nothing came as a shock. Practitioner

Strengthening support for practitioners Some practitioners spoke about the importance of regular team meetings, as they could be a good way to work through problems and think about how the service could be improved. We have a lot of team meetings, so we thrash out any problems as we go along. Practitioner We have meetings, evaluate what we have done and think about improvements. Practitioner

One practitioner said her organisation held both residents and staff meetings once a month. She laughed as she said: It’s when they moan about us and we moan about them! Practitioner

Beyond consultation: service user involvement in reshaping support Participants highlighted a range of ways in which they could have an effective say in changing support services. User-led training One way they highlighted to achieve change was through involving service users in training practitioners. A manager explained how a local group of older people had been able to do this through presenting their own experiences of services and then becoming involved in training professionals. We warned statutory agencies that we were coming and we then presented our findings – some of which were quite horrendous – to the health authority’s board and the social services management board. And the older people went along and I introduced them and they told them what they found and they actually achieved some change. You have then got to start to permeate it down the organisation and involve all the people in training. It is one thing I 327

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think that can work, but it takes time and effort and you have got to get your agencies to put the money into the people to do the facilitating. Manager

User involvement in staff recruitment We found that service user involvement in the recruitment of practitioners was commonplace, but service users’ role in recruitment processes varied. Some had been involved in meeting candidates and showing them around. Others had taken part in a separate discussion prior to interview. It was unclear in many services whether service users actually had a say in recruitment decisions and therefore whether they had real power and influence in the selection process. We are partly involved in that we show them around. Some of us are on the interview panel as well. [Name of manager] says nothing more, but you can tell if they got the job because then they are here. Service user For [the manager’s] role, there was a panel of service users and separate interviews and for each management position there’s been service users. It took quite a lot of training beforehand, to find out how we could use a scoring system from service users to be fed into the other interviewers. And finding out what sort of manager they [service users] wanted, I was able to build a picture of the person they did want and who they didn’t want. I had outcome sheets on everyone so they [the interview panel] could have it. Practitioner

User involvement in commissioning In one area, a manager told us of local plans for service users to be involved in commissioning services. This was seen as a significant step in ensuring that service users’ views had influence and power. We are moving towards a user-led commissioning strategy, which will be jointly written with the Grandshire Coalition of Disabled People. [It] will have a board that is jointly chaired. One of the purposes of that board is going to be to monitor and review how things are, that’s going to have to link to outcomes. If we can think through ways of linking this with … plans that are going that come out of the Commissioning Strategy – if we can have a 328

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unified approach across the piece – that could be very interesting. Manager

Case study How to do ‘involvement’ In one area, many participants spoke about the management committee of a local day centre. They saw it as an example of user involvement that carried genuine power. Members of the committee were elected by day centre users. They represented service users’ views to the manager, discussed decisions about the direction of the centre and were involved in the recruitment of staff. Crucially, they had a veto over management decisions. This offers an example of the progress that can be made, as well as some of the underlying problems of participation. We have got a management committee of service users. There are about 13 people. The majority of what goes on actually in the centre goes through us first, so it is user controlled. So if there is a problem, or if there is something that they want to do generally, we find out about it first, try and either resolve it, or implement it by a discussion of service users. Service user Everything that happens here is run through us … even to taking staff on, so we invariably get the people we want. Service user It’s a centre run by the users as well as the people who work here.… Any decision that happens within the centre is passed through the management committee. If we don’t like the idea, it doesn’t happen. Service user The management committee is members of the centre. The only member of staff on that committee is [name of centre manager]. He is there to support and advise. Any developments are agreed by the committee. He might have the proposals, but if they don’t sanction them, he wouldn’t pursue anything further. The chairperson is always a member of the centre. Practitioner

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Supporting people Genuine management of services like day services, it is going to take a long while for disabled people to have their mark. But this is one of the best examples of how it’s pushing towards that. Disabled practitioner Despite this enthusiasm, some practitioners at the centre felt that the involvement of the committee was not as great as it could be and that members were not as challenging as they could be. Members meetings, the committee that is run by elected members here, that probably hasn’t got as much teeth as maybe the manager would like. One or two people who are very [pause] – speak out, very proactive, a lot go to the meeting and then to the next meeting and nothing happens in the middle. Practitioner Practitioners said that they felt equally involved in decision-making at the centre. We are always involved, staff and members equally, the commitment and the dedication of the staff here is something I think is fantastic. Practitioner Grandshire Commissioning Team have now gone into partnership with Grandshire Coalition of Disabled People and they actually pay that group a certain amount of money to be like a user-led part of the commissioning team. So it’s not just asking, ‘Is this alright?’ It’s having people there to make the decisions about this. ‘This is what we need. This is what’s missing. Please commission those services because that’s what needs to be around.’ Manager Everyone involved assured us that the committee had a genuine veto on decisions that they did not agree with. The manager referred to this in relation to the decision to enter into a partnership with a children’s centre. They could have said no to all this. Quite where we would have gone with that I don’t know. People have been engaged with and constantly informed. Manager

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Working towards better involvement As this chapter makes clear, there is now significant pressure for the involvement of service users in policy and practice. More to the point, unless they are actively and appropriately included, their knowledge, experience, ideas and expertise are lost (Beresford, 1998). As has been seen, user involvement can take many different forms and there are now many different ways for service users to take an active part in where they live, the services they use and the running of organisations that impact upon them (NYA, 2009). What we heard in our project leads us to believe that there is much room for improvement in the involvement of service users. It highlights the need to maximise people’s involvement and not rely on conventional approaches that are often ineffective, frustrating and lead to little change in people’s lives. Involvement is not just about ‘consultation events’. It can ensure that people are able to play an active role in day-to-day decisions about their lives and community. Involvement is not just about one-off or special events. It can be an ongoing process, integral to all public services and organisations. What people told us in this project pointed towards a number of characteristics or principles for successful involvement, regardless of the method being used or its application. We present them here as a series of questions that anyone planning any kind of involvement can helpfully ask. This is not an exhaustive or definitive list and it is intended to be read in association with other guidance for involving people effectively (for example, Beresford and Croft, 1993; Beresford, 1998; Fleming et al, 2007). Before starting • Have there already been similar attempts to involve people? What has been learnt from them? How will this one be different, better and build on what has been done before? • How can service users be involved in planning this involvement, so it benefits from their ideas and experience? • How would service users like to be involved? For example, what questions should be asked, and where and when should the event be held? • Has a realistic timetable for involvement been worked out and have necessary resources been identified and made available? • Will you be involving service users right from the start, in line with good practice?

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• How will you make clear that involvement is entirely voluntary, with no come back? Who are you involving? • Are there existing groups, forums or organisations of service users who you could approach to be involved? • Which groups of service users are you involving and why? • How will you involve people who are not part of groups or organisations? • How many service users will be involved? • Will there be opportunities for service users to be involved individually and collectively? Service users may feel more confident to express their views alongside other service users. • Different people like to be involved in different ways. What different ways of involvement are you offering to match this? Communication and written material • Are you using written materials? If so are they accessible and suitable for the service users you want to involve? • What steps are you taking to include those service users who do not read written English? Can you provide information in other formats, (for example, an audio version, in easy read, electronic format, in other languages, etc)? Access to meetings and activities • Is there sufficient notice for service users to take part effectively? (This includes time to make arrangements to take part and may include time to prepare, with a support worker). • Do any service users require personal assistance to attend a meeting, in travelling or to prepare? • Will an interpreter, British Sign Language (BSL) signer or palintypist be required? • How will you know what individual service users’ access requirements are? Inclusion and diversity • How are you seeking to ensure diversity in involvement? • What are you doing to make sure that people can get involved on an equal basis, regardless of gender, sexuality, ethnicity, class, culture, belief, age, disability, etc? • What steps are you taking to ensure the involvement of groups that face particular barriers (sometimes described as ‘seldom heard 332

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voices’), for example, members of black and minority ethnic communities, asylum seekers and refugees, people living in residential services, in rural areas or who have difficulty leaving their homes, people who communicate differently, are homeless, travellers, or have experience of the penal system? • Are you involving service users both who are and who are not affiliated to service user organisations? Money • Has a budget been identified for user involvement in your service or organisation? • Will service users be paid for their involvement in participatory schemes and initiatives? (Has this been organised taking account of requirements relating to benefits?) • Will service users’ travel expenses be met? • Will the cost of service users’ personal assistance and other support costs be met? Anonymity • Can individual service users’ contributions to involvement be anonymised? • Are there ways of ensuring that no repercussions can occur within services to any service user as a result of what they say? Getting together • Where meetings are appropriate, how will these be made welcoming and comfortable for service users? • Large meetings which rely on verbal and written skills can be intimidating and off-putting for people. What steps will you take to facilitate involvement (for example, working in small groups, facilitation by service users, etc)? • Will the language used in meetings be plain and easy to understand? Will it be free from jargon? • Will adequate and pleasant refreshments (reflecting dietary needs and diversity) and a quiet room be available? Scope of involvement • Is it clear why people are being involved and what they are being asked to get involved in? • What is being planned? What is the scope for influence/change as a result?

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• What is the aim of involvement – is it to meet formal requirements, to collect information, or to inform and make possible change? • Are there clear, specific aims for involvement? • Is the information given about involvement open and honest? • Do service users have all the information they need to be informed participants? • Is this a ‘one-off ’ event, or part of a larger ongoing programme? • Will you be able to help service users with any individual issues they raise? How can you support them to follow up anything that is raised? • If involvement raises painful issues for any service users, will there be support for them to deal with these? Feedback • Feedback is a crucial phase of user involvement. What feedback will be provided to service users? • Have you checked how service users would like feedback to be provided? • How will feedback be provided to service users? • When will feedback be provided to service users? • Whose job/responsibility is it to provide feedback to service users? Follow-up action • What commitments to take action in the light of service user involvement are you making? • How will you negotiate different interests, ideas and proposals? • How will service users be involved in deciding and taking action following involvement? • Have funding and other resources been identified and allocated to follow up what people want? • How are you evaluating user involvement? How well did it work, what did participants think of it, how could it be improved? Outcomes from involvement • How are the outcomes/achievements from involvement evaluated? • What has been achieved by such involvement? • What helpful next steps are highlighted? Case study

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Supporting involvement across roles and services Participation is often framed in conventional political and organisational terms, focusing on service users having a say in the planning and management of policies, services and agencies. But it no less applies to individual occupational practice and people’s personal lives, particularly in the context of personcentred support. Issues of choice and control in people’s lives, particularly at difficult times when they may be especially vulnerable, are at the heart of user involvement. But the different, sometimes conflicting roles and cultures of different services can sometimes get in the way of this and indeed, get in the way of person-centred support. This was highlighted during our work in Camchester with the partnership concerned with choice in end of life care. Here this issue was played out in relation to advanced directives or living wills. We became aware of the complex and potentially conflicting roles and responsibilities between different services relating to these documents. For many people the balance between medical treatment and quality of life is crucially important as they approach the end of their lives. This issue is currently gaining high level visibility with public and political debates about ‘assisted suicide/dying’ and euthanasia. For most of us, being able to choose where we die is important. Many older people living in residential or nursing homes feel strongly that they do not want to die in hospital. Some people make their intentions clear by recording advanced directives, also known as living wills. These set out what medical intervention the person would like to have and particularly, which treatments they do not want. They are a way of making decisions in advance while the individual has the ability to consent, in preparation for a time when they may not. Most older people wanted to die in the homes in which they lived, rather than be taken to hospital. One nursing home practitioner articulated a point made by many people we spoke to; that the standard of care and nursing that residents received by staying in the home at the end of their life tended to be at least as good, if not better, than what they received if they were admitted to hospital. But when paramedics/ambulance staff became involved, the pressure on them to resuscitate patients, regardless of their wishes, could create serious conflicts. This could undermine the rights and

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Supporting people preferences of service users and override the efforts of practitioners seeking to support them. One of the big issues for us in Camchester is that there are a lot of anxieties about not doing the right thing – in inverted commas – and if the ambulance service is called out, they whisk people off to hospital – even if there are notes in the records to say that they want to stay here. They argue that this is a clinical decision, but there are currently four organisations all with the same ‘do not attempt resuscitation’ remit but all are writing separate policies and the ambulance service really doesn’t link into any of them. So we’re currently working on that because … we’ve had a couple of instances where, despite family requests when somebody is in a poor state of health, they’ve been just totally ignored, and people have died in hospital, or in A & Es [accident and emergency units] and one who actually died in the ambulance on the way to hospital. Manager Getting it right, getting it how that person wants it and not being pressured by forces that might be beyond your control. The worse thing for me is when we know that person wants to stay here and we might not have the one signature that we need, or we rang the GP [general practice] cooperative [in] the night-time, because of a pain relief issue or something like that and the next you know, a 999 is knocking at the door – which does happen. And sometimes it is very hard to stop them taking her away because of their legal obligation of being called out. That is the worst thing for me. Practitioner We’ve had one case with a lady who was discharged to a nursing home at lunch time and for her journey from the hospital to the nursing home had a DNR [do not attempt resuscitation] form faxed through to the ambulance service and she was fine. She had her tea and then about five minutes after she’d eaten her tea, she became quite poorly, she became quite breathless, so the staff rightly dialled 999. She’d said that she wanted to spend her end of days in the nursing home and her son was present and asked that she should spend her end of days in the nursing home. The paramedic came and resuscitated her in front of the family because the DNR form from the morning did not stand [it was only for the journey]. So there are huge issues around, I think, about the basic rights of service users. Manager

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Participation The use of advanced directives was problematic. There was often a lack of clarity for the service user, their relatives and practitioners about their legal basis and how they should be prepared and circulated. We were told that in order for advanced directives to be observed by health care workers, they had to be signed by the GP (general practioner). The wishes of the service user had to be communicated to the relevant health workers, preferably in advance. Convincing paramedics and ambulance service staff of the validity of advanced directives, could be difficult. Practitioners in residential and nursing homes played a crucial role in explaining the service user’s wishes to other health care workers, often under difficult circumstances. Well we try and avoid that. Sometimes it’s the nurse on duty who has got to stick to their guns really and say, ‘No, this is what has been recorded and this is what the request is and we just want to keep people comfortable here.’ There are occasions when you get a cavalier GP or someone who says, ‘No we are doing it this way,’ and try and force things through. We generally try and talk to the relatives as well as the resident. Obviously if the resident is not conscious, not able to communicate, then we will enlist the help of a relative to say to the GP, ‘Look this isn’t what we want.’ Practitioner Staff spoke of the need for awareness raising and training to prepare both health care workers and staff from residential and nursing homes to deal with these difficult, pressurised situations. The different agencies were working together and had produced protocols to assist staff, but it was felt that much more work was needed to avoid the traumatic circumstances of people being taken to hospital against their previously expressed wishes. I think for them [paramedics], there are huge issues around their role really. Because the ambulance service role is to preserve life and what we’re asking them to do is to work in a whole new different way and I think for some of them, that is an issue and I think it’s about working through those issues with them and trying to get some sort of agreement. I think probably with the new sort of documentation about the preferred place of care, documentation that will be coming out and advanced care planning, they may start to get around that. Manager We heard about improvements that meant that service users’ wishes were being respected – albeit often via other family members. A manager of one independent care home reported that with the use of advanced directives, most of their residents had died in the place of their choosing.

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Supporting people Yes, it has made a huge difference. We have only had one person admitted to hospital to die and that was right that they should go in. They had a sudden acute episode and they needed to go to hospital. I think our previous five all died in the nursing home and all [the GPs] had written in the notes, ‘Discussed with the family. Not for hospital admission.’ Which has made things a lot clearer for the nurses. Manager A relative of a resident in a nursing home told us of a situation where a member of staff had averted a resident being taken to hospital against previously expressed wishes. This demonstrated improvements in the way that the different organisations were working together. If paramedics are called, then you have no say in the matter. They are obliged to attempt to resuscitate. I know once there was an agency nurse on and she sent for an ambulance and one of the permanent staff picked up on it and said – the ambulance was actually here – ‘No, he is not to go to hospital. His wife does not want him in hospital,’ and they sent the ambulance away. So they do take note of your wishes. Carer/relative It is, however, important to note that while what we were told about in these situations reflects that families are increasingly being consulted and involved about end of life decisions, the person directly concerned, is still often not having the opportunity to express their own wishes. Perhaps the most important factor in ensuring that service users’ wishes were respected was the quality of the relationship between nursing and residential homes and GPs. Many people said that if there were good relationships with GPs, then patients’ wishes tended to be understood and upheld. On the whole it has been good. There have been occasions where we have practically come to blows about the care that somebody should receive towards the end of life. Because they want them to go into hospital and sometimes, I really don’t see the point, unless they are going to give them some drastic treatment. I don’t see the point of somebody being shipped halfway across the city for something that we could do here really. But on the whole my experiences have been good. We have built up relationships with GPs and they tend to listen to us. There is not much point in them going into hospital, because the nursing care they are going to receive there, is going to

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Participation be no different to what we can give them here. But they are good, our GPs! Practitioner

CASE STUDY ENDS

Summary This chapter focuses on participation, a key element of personcentred support. While governments have increasingly expressed their commitment to participation in social care, health and beyond and it can be seen as a cornerstone of person-centred support, service users and others report many negative experiences of user involvement. They highlight a frequent lack of involvement, tokenism, a lack of support for involvement and resistance from services and managers. They describe continuing reliance on inappropriate and unsatisfactory methods, as well as a lack of feedback and the slowness of change and indeed any change at all sometimes, as a result of getting involved. Participants identify a range of helpful principles for and approaches to involvement. They emphasise the importance of early and regular involvement, the need for effective involvement in decision-making structures, for collective as well as individual user involvement and to involve both service users and practitioners. They identify a range of areas where people are most productively involved, including involvement in staff recruitment, training and commissioning. They offer examples of both effective and unhelpful schemes, as well as showing the complex issues that may be entailed. Guidance drawing on the experience and ideas of service users, carers, practitioners and managers offers a basis for successful and inclusive involvement. Three case studies look at how not to do user involvement, how to do it and the barriers created by conflicting roles and cultures in services that may undermine it and how these can be overcome. While we heard of many improving situations, there is still a long way to go. References Barnes, M. (1993) ‘Building change and making it stick: a local authority wide perspective’, in P. Beresford and T. Harding (eds) A challenge to change: Practical experiences of building user-led services, London: National Institute for Social Work, pp 126-37. Beresford, P. (1998) ‘Social exclusion, regeneration and participation: the crucial coupling’, Streetwise, no 34, vol 9, p 9. 339

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Beresford, P. and Croft, S. (1993) Citizen involvement: A practical guide for change, Basingstoke: Macmillan. Beresford, P. and Harding,T. (eds) (1993) A challenge to change: Practical experiences of building user-led services, London: National Institute for Social Work. Branfield, F. and Beresford, P. (2006) Making user involvement work: Supporting service user networking and knowledge,York: Joseph Rowntree Foundation. Campbell, J. and Oliver, M. (1996) Disability politics: Understanding our past, changing our future, London: Routledge. CSIP (Care Services Improvement Partnership) (2008) High impact changes for health and social care: An inspirational collection of organisational initiatives, March, London: CSIP. DH (Department of Health) (2005) Independence, well-being and choice: Our vision for the future of social care for adults in England, Green Paper, March, London: DH. Evans, C. (1995) ‘Disability, discrimination and local authority social services 2: the users’ perspective’, in G. Zarb (ed) Removing disabling barriers, London: Policy Studies Institute, pp 116-23. Fleming, J. and Skinner, A. (2007) Influence through participation:A critical review of structures for youth participation, London:I&DeA. Morris, J. (1993) Community care or independent living?, York: Joseph Rowntree Foundation. NYA (NationalYouth Agency) (2009) Involving children and young people: An introduction, Leicester: NYA. Oliver, M. (1990) The politics of disablement: A sociological approach, Basingstoke: Macmillan. Priestley, M. (1999) Disability politics and community care, London: Jessica Kingsley Publishers.

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Part Four: Making Change to Achieve Person-Centred Support

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Change for person-centred support More often than not, big change programmes fail. Failure is a real possibility…. Organisations which constantly reorganise themselves tend not to perform well. (David Nicholson, Chief Executive, National Health Service, Guardian Public Services Summit, 5 February 2009)

Introduction In the last chapter, we learned how service users and others emphasised the importance of service user and worker involvement to achieve change. They saw making change as the primary purpose of user involvement and getting involved. The focus of this, the final chapter, is change itself and what change will be needed if person-centred support is to be established as the routine and mainstream way in which services seek to meet people’s rights and needs. This whole book is about making change. It comes at a time when there is widespread recognition that there must be reform in how people are supported in our society. We see the book as part of a continuing process of trying to bring about change. The project it draws on was concerned to help make change and to develop evidence and learning about how to do this most effectively. The book started by highlighting the current view, both among government and public, that there needed to be change in social care. This was framed officially in terms of a move to ‘personalisation’. Yet even during the course of the year in which this watershed change in policy direction was embarked upon, 2008, a shift emerged from purposeful ministerial statements like ‘the issue is not if, but how’, to increasingly questioning and cautious views from previously enthusiastic experts and commentators (Brindle, 2008). The government of the time also did not wait for the findings to be available from the research it had itself commissioned on individual budgets before making the massive move to personalisation from traditional social care services. As a result expectations for moves to personalisation and self-directed 343

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support, seemed to be changing within a year, from ‘transformation’ (the government’s term), to continued progress where there was grassroots commitment, but limited progress beyond this (Glasby and Littlechild, 2009). We made clear early on in this book, the irony that while there is currently a strong emphasis on the need for change in social care, it is a field where there has been constant change for years now. This change has mainly been organisational, structural and managerial in nature. There has been an almost continual process of reorganisation in social care. David Nicholson quoted at the beginning of this chapter has described this as ‘organisational churn’. For example, the last Labour government embarked on a three year campaign to mainstream personal budgets and personalisation, but as yet the international evidence of success in doing this is very limited (Boxall et al, 2009; DH, 2009) Perhaps it is not surprising that service users’ comments, from this and other projects, suggest that there has been a remarkable continuity in their experience of services and that this experience has frequently not been positive (for example, Beresford et al, 2005; Branfield et al, 2005). This preoccupation with change has itself significantly impacted upon our project. For example, not only as we have said, was social care provision undergoing change and social care funding under review, but also ethics procedures for social care research were being changed (see Appendix One); social work practice, the social care workforce and social care organisations were all under review. The economic situation changed dramatically, with the onset of recession, increases in unemployment, the bailing out of banks and further restrictions on public expenditure. Government change and massive cuts in spending on public services added to this rapidly changing environment. Closer to home, constant changes within social care meant that some of the leads in our eight partner sites had moved on before we had even started the project, while others left during the course of it, meaning that new people took over who may have had little or no knowledge of or interest in their organisation being linked with such a development initiative. Other managers came and went, organisations reorganised and key staff were made redundant and in one case longstanding plans to restructure services were at last taken forward. We have had a particular interest in change – in terms of both means and ends; the process and the outcome. We were interested in exploring participatory and inclusive approaches to making change and bringing about change which would result in more person-centred support. This underpinned our commitment to engaging the perspectives of service users, practitioners and managers – and as we progressed – carers. 344

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Hence the three initial questions which we sought to answer through these perspectives were: • What does ‘person-centred support’ really mean? • What are the main barriers to such person-centred support? • How can these barriers be overcome?

Person-centred support We explored with service users, practitioners and managers how they defined person-centred support. There was a high degree of consensus. Crucially they saw it as much more than a technique or means of delivering support. Instead they tended to conceive of it as an approach to support that was strongly value-based and where the relationship between service user and worker was of central importance. They highlighted a range of personal qualities and skills that workers needed to provide person-centred support. They emphasised the importance of listening to service users, flexibility, adopting a positive approach, having up-to-date accessible and reliable information, setting goals, treating people as individuals and ensuring them choice and control. This is in some contrast to UK political and policy discussions about personalisation, where while there has been a strong rhetoric of ‘choice and control’, the focus has been on the detail of techniques to achieve ‘self-directed support’, like the ‘RAS’, direct payments and individual/ personal budgets, with much vaguer discussion of personalisation in more general terms.

Barriers to person-centred support Our project highlighted the barriers that people saw in the way of person-centred support. Indeed, as readers will have seen, Part Two of this book is organised according to these barriers. They include: 1. Inadequate funding, limiting the availability and quality of services and support and restricting access through both means and ‘needs’ testing. 2. The limits of the workforce – in terms of its nature, quality and sustainability. 3. ‘Informal care’ – in terms of its reliability, sustainability, suitability and the problems it poses people both as ‘carers’ and ‘service users’. 4. Institutionalisation, particularly in relation to residential services and other separate specialist services, which fit service users into their 345

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requirements, rather than responding to service user’s individual needs and common rights. 5. Organisational structures, particularly through problems of bureaucratisation, managerialism and preoccupation with negative risk. 6. Occupational practice that is still often paternalistic, inflexible and reflects a disempowering one-size-fits-all culture. 7. Support that is frequently difficult to negotiate, inaccessible and doesn’t reach some groups. 8. Inadequate and inferior access to mainstream services and opportunities.

Overcoming barriers What quickly becomes apparent is that service users, practitioners and managers all have ideas and are all doing things to address and indeed overcome these barriers. So the story is not just one of the obstacles in the way of person-centred support, but also of the practical steps that organisations and individuals have developed and are taking to challenge them. The importance of their efforts and frequently the determination and innovation that goes with them, should not be underestimated. They are frequently what is making it possible to sustain the discourse and development of person-centred support, in an environment which may be unreceptive or even hostile to it. Equally the impact of this environment should not be underplayed. Too often in the past, pioneering developments in social care have been applauded by policymakers without the necessary conditions being ensured for them to thrive. There is a modern history in social care and indeed other public policy, of constant ‘programmes’, ‘initiatives’, ‘schemes’, pilots and ‘projects’, usually short term and accompanied by special resources, input and visibility, with little clarity about how they will be ‘rolled out’, ‘mainstreamed or sustained subsequently. For this reason it is essential to look more closely at the broader barriers people have identified as inhibiting person-centred support. While some barriers and perhaps, all barriers at some levels, may be amenable to local and individual efforts to overcome them, it cannot be assumed that person-centred support can be advanced in isolation from wider policy, political, cultural, economic and other social forces that may operate on it. If we look more closely at the eight major barriers in the way of person-centred support that people identify, which we have listed above, two key issues, sometimes interrelated, seem to underpin them. These are issues of funding and of culture. 346

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The longstanding inadequacy of social care funding seems to lie at the heart of five of these barriers (inadequate funding, the limits of the workforce, informal care, inaccessible support and inadequate access to mainstream services), while problems relating to a culture antagonistic to person-centred working and support, can be seen to be associated with at least five of the barriers too (institutionalisation, organisational structures, occupational practice, inaccessible support, inadequate access to mainstream services).

The problem of funding It is not only that social care’s current funding levels are inadequate. Social care has also been inhibited by a longstanding history of inadequate funding. It is difficult to see how the inadequacy and unreliability of its funding, the damaging effects this has on the quality of the workforce and the resulting denial of support to service users, can be resolved by anything less than the most radical reform of the traditional residual system of social care. At the same time, the longstanding poverty of funding seems to have created strong political disincentives to rethink the philosophical or funding basis of social care. Problems are compounded by the differentials created by a local government based system. These include inconsistent standards, ‘the postcode lottery’ and what have come to be called problems of ‘portage’ – the inability of individuals to take their existing levels of support with them if they move – because different local authorities have different policies and cash limits and may face different circumstances. It seems unlikely that just pumping in some additional funding, or distributing it differently will make a major difference. Both techniques to some extent have been tried before. Yet there seems to be a real reluctance among both politicians and policymakers to subject the funding of social care to fundamental review, even though there has been growing recognition that some kind of serious change is needed (Hirsch, 2006; Lloyd, 2008; Collins, 2009). For a long time, for example, little attempt was made to take forward the case for social care to be funded from general taxation and offered on the same terms as the health service, as a universalist service, essentially free at the point of delivery. In 2009, the government ‘ruled out’ this option from consideration in its public consultation over social care funding reform, even though it identified it itself as having the advantage of being universal and being probably the ‘simplest [original emphasis] and most easily understandable way of funding care and support’ (HM Government, 2009, p 116). It rejected this system of 347

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funding as placing ‘a heavy burden on people of working age’ (HM Government, 2009, p 16), thus framing older people as essentially burdensome and ignoring the growing need for support from people of working age. In 2011 the Dilnot Commission on the Funding of Care and Support set up by the Coalition government similarly ruled out social care paid for out of general taxation, even though its remit was again to offer a lasting solution to the problem of social care funding. There was also little organised pressure on government, for example, while this project was being undertaken, to move radically from existing funding arrangements. The large charities involved appear to have been reluctant to argue for any kind of fundamental shift in the system of funding. Instead on very limited evidence they argued for some system of ‘co-funding’ with service users ‘sharing the cost of care’ (Caring Choices, 2008). The feasibility of such a system and its capacity, now or in the future, to cover all potentially requiring support, has not, however, been adequately demonstrated or evidenced. The Hampshire Commission on Personalisation, reported that: Many [responding to its call for evidence] felt that universal entitlement to a basic degree of care would be more fair; they had paid their ‘dues’ through income tax and national insurance and therefore should be entitled to publicly-funded care. (Hampshire County Council, 2008, p 35) When a straw poll was conducted at a large public meeting called by the Commission, bringing together service users, carers and practitioners, most people supported funding social care through general taxation. Yet the Commission did not feel able to include this as a recommendation for the long term. There seems to be a general unwillingness to offer such far-reaching proposals for fear they will be ruled out as unrealistic by government. It is arguable, on the other hand, that it is part of the role of charitable and other independent organisations to raise such a challenge – if there seems to be good reason for it. Without such challenge from organisations which seek to speak on behalf of citizens, service users and carers, there is little pressure on government to review its approach to or priorities for social care. Certainly service users seem to be supportive of transforming social care into a universalist service, funded from general taxation (Beresford and Hasler, 2009). They and their organisations, however, as yet have not had the power to press for this successfully. They have sought to achieve it through initiating independent living legislation, ensuring entitlement to support. Government rejected this in favour of a five348

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year strategy to move more incrementally towards independent living for disabled people. However, service users’ strong and continuing support for universal taxation as the preferred means of funding social care was further highlighted by a national survey in 2009 supported by the Joseph Rowntree Foundation (Beresford, 2010). The ‘Big Debate’ on social care funding which the government initiated in 2009, not only gained an unprecedented response, with more than 27,000 submissions from organisations and the public, but also made clear that a large number of voluntary, service user and carer organisations supported the inclusion of general taxation as an option for future social care funding. This view was also shared by the 2010 Health Select Committee report on social care (Health Select Committee, 2010). The Labour government White Paper proposed the setting up of a national all-party commission to explore future funding options and made clear that it would include funding from general taxation in its remit (HM Government, 2010). But if growing support for more universalistic funding options for the first time seemed to be bringing them into the political mainstream (Hirsch and Spiers, 2010), by 2010, the massive UK deficit, the election of a new government and its commitment to massive and rapid spending cuts, again seemed to rule such universalist funding proposals out of serious political consideration, as was reflected in the deliberations of the Dilnot Commission. Social care’s inadequate funding seems to be a first order barrier restricting the development of a comprehensive system of personcentred support. Our project, as can be seen in Chapter Three, evidenced many ways in which people were excluded from support and person-centred support was discouraged and made difficult to sustain, because of funding difficulties. It is difficult to see how any system of social care that is not adequately funded and based on universal entitlement is ever likely to meet the needs and safeguard the rights of the growing number of people requiring social care support, or address the increasing shortfall in supply. This is certainly the conclusion that the findings from our project leads us to. It is also difficult to see how effective integration between health and social care is to be achieved so long as their funding bases are so different. Current funding arrangements reinforce, rather than help overcome longstanding divides and territorial disputes between the two. The problems with a residual system of social care are likely to increase as demand increasingly shifts from health to social care needs as a result of health care innovations, demographic and other changes.

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Culture change As we have seen, funding problems make it more difficult to achieve and sustain culture change consistent with person-centred support. However improving funding without addressing the culture of organisations, services and workers, is unlikely to result in lasting and helpful improvement. The lesson from history is that there needs to be both adequate resources and appropriate culture for support services to improve. The social services departments established in the early 1970s were initially well resourced, but their essentially paternalistic, hierarchical and bureaucratic culture meant that they did not achieve what was hoped and promised for them. Already by the 1980s, there was a strong move away from these departments, to more local, participatory, community-based and integrated services. This was embodied in developments like community and patch social work (Beresford and Croft, 1986). In our project, rooted in the nature of organisations, we could see many of the old problems of risk avoidance, paternalism and disablist attitudes, compounded by an overlay of new managerialism in which were embedded non-person-centred approaches to practice and provision. Our project highlighted the need for major cultural change away from existing pressures to institutionalisation, managerialism and standardised provision, to support the large-scale implementation of person-centred support. While many examples emerged of low-level change increasing people’s choice and involvement, broader policy pressures were operating to push service cultures in the opposite direction.

A systemic approach to person-centred support The lesson from our project seems to be that it is possible to make some progress with person-centred support within the existing framework and philosophy of social care, but this is likely to be limited, vulnerable and inequitable. It is only likely to reach some service users and they cannot be sure that it will be maintained reliably over time. This reflects the modern history of social care more generally, where while there have been helpful initiatives, schemes and programmes, the problem has always been rolling these out successfully to become the routine and mainstream experience of all service users. Thus the big issue seems to be to find ways of moving from small scale, often short-term initiatives to mainstream arrangements as routine practice. While language and ideas have developed around this, for 350

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example, ‘trickle down’, ‘rolling out’ and ‘mainstreaming’, it remains a major problem to achieve. The Joseph Rowntree Foundation supported two earlier attempts to mainstream change in social care, both relating to the 1990s community care reforms. The first of these was the Birmingham Community Care Special Action Project, which aimed to develop effective policy and support for carers (Barnes and Wistow, 1992, 1993, 1994). The second was the Margin to Mainstream project, carried out by the Office for Public Management (OPM) (Goss and Miller, 1995). Although both were high profile properly resourced projects, neither was able to make a lasting impact. What now seems to be needed is a systemic and on-going approach to person-centred support. This raises two key questions relating to change: • What would such a system of social care committed to personcentred support look like? • How is it to be achieved? These questions, which now tend to be talked about in terms of the ‘how’ and the ‘what’ of policy, both need to be answered. Clearly they are to some extent interrelated and interactive, but any discussion which focuses only on the first – as most seem to – can rightly be dismissed as at best offering no more than a wish list, or at worst perpetuating the traditional paternalistic approach to social policy development; of ‘experts’, policymakers and professionals setting out their own prescriptions. We need to begin by looking at how desired change is to be achieved and that means first looking more carefully at our understandings of making change.

Ideas and theories about change Change is a key sociological concept. Sociologists have identified many forms of change, including behavioural, organisational, social, economic, cultural, ideological and political change (Haralambos and Holborn, 2008). As we have seen in social care, there has been a tendency to focus narrowly on organisational change. Yet the factors currently affecting social care and the needs it must meet, are much broader, including particularly cultural and demographic change, with, for example, changes in the family and in health, ethnicity and age distribution in western societies like the UK. We have also seen how broader ideological and political developments, including the creation of the welfare state in the late 1940s, the shift to the market, new 351

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political right and values of ‘new public management’ from the 1980s, then the introduction of ideas relating to the ‘third way’ from the late 1990s, have all helped shape social care and provided the context for social care practice and provision. Some theoreticians have also explored the interrelations between assumptions about human motivation and the provision of welfare services like social care. Julian Le Grand, for example, highlighted the shift from ideas based on individual altruism underpinning the creation of the welfare state, to beliefs based on people’s innate selfishness, guiding the advocates of market-led welfare (Le Grand, 2000). Unfortunately in developing such ideas, little attention has actually been paid to the views and ideas of people on the receiving end and the actual experience and impact of different welfare regimes on them. Processes of change themselves change too. Thus recently, with the advent of a ‘celebrity culture’ we have seen the introduction of ‘celebrities’ into the business of public policy change. For example, the celebrity chef, Jamie Oliver has been involved in high profile schemes to improve school meals which have gained a serious response from government. The death of Jade Goody, the reality TV star, from cervical cancer, became a rallying call for young women to be screened for early symptoms. While there may be resistance to taking such developments seriously because of a sense that they trivialise or cloud conventional policy processes, it would be a serious mistake to ignore them as unimportant or uninfluential.

Models of change In the related field of child protection, an unhelpful cycle of change has developed. As one of us wrote after the inquiry into the appalling death of Victoria Climbié: The inquiry must mark the end of child protection policy built on a hopeless process of child care tragedy, scandal, inquiry, findings, brief media interest and ad hoc political response. There is now a rare chance to take stock and rebuild…. The trawl for solutions now needs to go beyond the traditional calls for restructuring, more training and new organisations. These haven’t worked before. There is no reason to imagine they will work in the future. (Beresford, 2003) As the Baby Peter case sadly demonstrated subsequently, there did not seem to be any serious reassessment of policy change in this area of social 352

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work and social care at least. However, the setting up subsequently of the Social Work Task Force and then the Social Work Reform Board, to implement its recommendations, did seem to represent a break from this tradition. However, the establishment of the Monro Review of child protection by the Coalition government undermined this, with its suggestion that existing problems were unintended consequences of well-intentioned reform, rather than, as critics argued, the result of a shift to market-driven managerial approaches and inadequate funding (Dustin, 2007; Monro, 2010). A number of different approaches to conceptualising change have been developed, which offer helpful insights. The first of these draws a distinction between ‘top-down’ and ‘bottom-up’ approaches to making change. A top-down approach is characterised as imposing change from above on those who must work with it, while bottom-up change is presented as coming from ‘the grassroots’, originating from and being owned by people on the ground, who will have to work with it. While the reality is likely to be more complex, with a blurring of boundaries between the two and the two perhaps operating in parallel, this typology is helpful because it draws our attention to the origin of pressure for change and the possible implications that this may have. A related distinction that is drawn is between externally imposed and internally adopted change. In social care, the former has been associated with frequent reorganisations and restructurings which may lead to little or no perceived improvements by service users. The latter is linked with changes in how people work and what support they offer and service users receive. It can be internally initiated or externally supported and can result in a changed experience for service users. Much of the micro level change developing person-centred support that we encountered in our project can be seen as following from such internally adopted change. However we also came across examples of externally imposed change that had resulted in confusion and anxiety for service users and practitioners. We are in a bit of a quandary. It would be like having a heading of ‘change’ with a big question mark, because we don’t know. Practitioner

A textbook on changing practice in health and social care identified two expressions of change. It made the point that practice had both changed as a result of broader policy change and that it was possible for practitioners, with service users and supported by managers themselves to change it. Its authors argued that ‘practitioners are not 353

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passive puppets’ (Davies et al, 2000, p 1). This is a view we share in this book, while acknowledging the importance of addressing broader structural issues too. Watzlewick and others drew another helpful distinction between two forms of change. They identified first order change as incremental change within a system, while second order change was seen as radical, changing the system itself and thus meaning ‘change of change’, that is to say, change that is fundamental in nature and in its implications (Watzlewick et al, 1974, p 11). In an influential UK report on changing public services, the Audit Commission explored not only methods for bringing about change, but also key actors who would need to be engaged, including politicians and senior managers, if such change were to be achieved (Audit Commission, 2001). While there has been a tendency for services and policymakers in social care to focus on organisational change, service users, their organisations and movements have had much broader concerns, working for liberatory change. Like academic commentators such as Le Grand, they make connections between individual understandings and psychology and broader policy. However, these are of a different nature and for a different purpose. Here what has developed is a concern with personal empowerment through collective action, as a basis for making broader social and political change (Arches and Fleming, 2006). Change in services and support is considered within this context, as part of a broader agenda for overcoming oppression and discrimination and achieving people’s human and civil rights (Oliver, 1996, 2009). Change thus raises issues about power; the location and distribution of power and the relative power of different stakeholders in the process of change. This will be particularly apparent where change is imposed from the top down or externally. The experience of change for people in control of it, is likely to be very different to that of people who are at the mercy of such change. But as we have already seen (for example, in Chapter Six), where people have significant experiences of disempowerment, or of practice that is designed to cope, blame, interpret and accuse (Fleming and Ward, 2004) and have little understanding of their own capacity to exert power, even where there is a desire to increase their say and control, it may be difficult for them to make much use of such opportunities for empowering change.

Stakeholder issues We were conscious that different stakeholders involved in services could have different attitudes towards change. People often find change 354

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threatening and difficult, for example, service users who have lived in an institution may be fearful of change, even though they may be supportive of its hoped for outcomes. People may have many reasons for resisting change, depending on their understanding of its consequences. Change does not automatically lead to improvement. And what represents improvement to one person or group may be seen as a loss or cost to others. Those who doubt that improvement will result from the proposal or those who see undesirable consequences often challenge proposals of improvement. We should remember that ‘quality is in the eye of the beholder’. (Martin, 2003, p 111) Or as Gerry Smale put it: The consequences of change are quite different for those who feel in charge, with ‘their hands on the rug’, from those ‘standing on the rug’ as it is whipped away from under them. (Smale, 1998, p 316) Smale argued that:‘no one person or group can expect to be in control of all the many factors that will affect change’ (Smale, 1998, p 321). However, the role of key individuals, particularly managers is often emphasised by those working in and those writing about change in social care organisations. Martin, for example, says: The complexity of change in these closely interlinked services can be both confusing and frightening for service users, but local leaders can recognise the problems that service users might face during periods of change and can provide guidance to help people to find a pathway through the apparent chaos. (Martin, 2003, p 104) One manager participating in our project shared this view, seeing managers as having particular responsibility to manage change: … to put the options back on the table in a way that all stakeholders will be happy with. Manager

Other commentators, notably McMillan, use complexity theories to describe change within organisations as a more organic experience that is unpredictable and hard to control and that defies linear theories or 355

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approaches. She describes the approach of many traditional change theorists (for example, Walsham, 1993; Lewin, 1951) in these terms: Their idea of change is a controlled move from one stable state to another. There may be difficulties and short periods of uncertainly as the change takes place, but handled properly, that is all. It is a view which tends to consider the world as essentially stable and orderly and change as a disruptive and temporary aberration in the scheme of things…. There is an assumption that the direction the change has to take is clear and that by using specific and appropriate skills the required destination will be reached. This is a view of change that assumes that the future is predictable and that the organisation has enough information about itself and its environment to make predictable and effective plans. (McMillan, 2004, p 63) She clarifies the differences of a complexity approach: Every organisation is unique with its own culture, its own environment and its own complex web of living individuals. Thus each organisation has its own unique set of initial conditions. Thus it is not possible to transfer a set of organisation initiatives and successful models from one organisation to another and expect similar results. The differences in initial conditions are likely to lead to widely different outcomes. (McMillan, 2004, p 87) The culture – or more accurately – cultures, of organisations can be one of the most significant barriers to change. This is often due to views and practice becoming entrenched over time. Culture is a strong force and can be a major impediment to change. It is a system of beliefs and way in which people confer meaning on what they do, which suggests that it is not something that can be easily changed. Beliefs and values just aren’t like that…. When they do change, the process is more likely to be a gradual, bit by bit affair than a sudden wholesale conversion to a completely new set of beliefs…. Organisational cultures can take a generation or more to build up. It is therefore likely that they will also take an appreciable time to change. (Martin, 2003, p 158)

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Existing experience has indicated that attempts to bring about major change in embedded cultural beliefs and established institutional practices face almost insurmountable obstacles without the support of face-to-face staff. Research has shown how resettlement from the old ‘mental handicap hospitals’, for example, was systematically impeded and even sabotaged by staff who felt alienated, rejected and abandoned by the policy (Collins, 1992, 1993; Fitzgerald, 1998). More recent research into the modernisation of day services for people with learning difficulties (Dowson, 1998) and into obstacles in the way of direct payments (Henderson and Bewley, 2000) has produced similar findings. McMillan suggests that the involvement and empowerment of workers can lead to change within an organisation, but cautions that this may be resisted by some. Her view echoes our project’s findings about institutionalisation (see Chapter Six). A complexity approach would suggest that encouraging and empowering people to make small changes in their own spheres of influence and activity can be a highly effective way of transforming an organisation. However, it is worth bearing in mind that, while some people welcome empowering processes, others do not. They find the old controlling order familiar and in an odd way comfortable. Often they are afraid of change. (McMillan, 2004, p 86) We also know that face-to-face practitioners in social services have long been experiencing low morale (Balloch and McLean, 1999; Lymbery, 2001; Postle, 2001), resulting in poor recruitment and retention rates, which have had knock-on effects for the people with whom they work and their own ability to consider and implement change and innovation. The sheer scale and regularity of change have tested the capacity of staff for further adaptation – as we regularly found. We have just reduced the nurses by half so they have got a huge change to come and they are under a lot of pressure as well to perform in a different way. So it is like, how do you focus on this thing that is really, really important, when everybody is still reeling from all the changes that are taking place? Manager

Change can be especially difficult for service users, particularly when they have been subjected to institutionalising and disempowering regimes. Even the most positive changes can be threatening and difficult

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to deal with and adjust to. Therefore trust between service users and managers becomes particularly important. I think it’s being as sensitively honest, not brutally honest – as sensitively honest as possible – a culture of credibility of the people delivering the message … which is difficult to build up in a short space of time. Telling people how it is. Manager

The process of change itself needs to be person-centred and needs to respect the views and choices of the service user and this can often mean that more time needs to be allowed for the process. With time and experience, changes become established and are easier to adapt to. When we started, we did not know what we were doing, but now we do. Every beginning is a problem, but when you are used to the thing…. Practitioner

Our approach to change In social care, change has typically been imposed on service users and practitioners. This approach has continued even with the intention to move to personalisation. As a consortium including people with experience as service users, practitioners and development workers, we were committed to a participatory approach to making change. This was reflected in who we were, how we undertook the project and who we sought to involve. As we have said, we focused on including the perspectives of three key stakeholders in our project: service users, faceto-face practitioners and project managers. The first two groups, while key to person-centred support – the first as beneficiaries, the second as its providers – have tended to be neglected and excluded from most attempts at and considerations of change in social care. We wanted to challenge this. As we wrote in our bid to undertake this project: We see extending ownership to service users and practitioners as key to systematising good practice. It provides the knowledge base for improvement as well as a force for change. We are committed to involving as wide a constituency as possible in the development, final design, process and evaluation of this project. We see it as depending on the ownership of all stakeholders, particularly service users and practitioners, supporting and drawing on their knowledge, views and experience. We see ourselves as offering

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skills and experience to help them play a central part in this project. (Branfield et al, 2004) The project was committed to supporting internally adopted change, which is why we placed an emphasis on the involvement of service users, face-to-face practitioners and middle managers. We wanted to enable these three stakeholder groups to share ownership of change, as well as others. We wanted to support staff to share the aims, ideas and methodologies of the project to gain their support and goodwill. We approached change from the position that it was not necessarily about having a ‘good idea’, but had much more to do with the way that change was actually implemented (Smale, 1998). We also paid particular attention to issues of diversity and equality in undertaking this project, since some groups are especially likely to be marginalised or excluded in processes of change. This can extend to social care workers as well as service users. Groups that have repeatedly come to the attention of Shaping Our Lives as not being adequately involved in developing support include: • black, Asian and minority ethnic service users; • people who communicate differently; • people with learning difficulties seen as having ‘profound and multiple impairments’ and/or ‘challenging behaviour’; • older people, including very old people; • people living in residential institutions or restricted to their own homes; • people with support needs in the prison system or subject to other formal restrictions to their rights; • refugees and asylum seekers; • homeless people and travellers; • people on benefits and other low incomes. (Branfield and Beresford, 2010). This is of course a list that closely overlaps with that we set out in the last chapter, of people who tend to get left out of participatory developments more generally. We worked to involve the widest range of service users, including those most at risk of being excluded. Members of our consortium had considerable experience of working with and involving these groups and we placed particular priority on working in accessible ways to enable as diverse involvement as possible, addressing physical, communication and cultural access issues.

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In order to achieve whole system change, we engaged key stakeholders at all levels: people who used services, informal carers, qualified and unqualified staff (in residential, field, day care and other services), middle managers and senior managers, commissioners, planners and policymakers. We kept in mind structural barriers to change as well as the promotion of innovative and problem-solving ideas from service users and practitioners. We did not believe that either a ‘bottom up’ or a ‘top-down’ approach was sufficient on its own, but that both methods should be used simultaneously. As we put it in our project proposal: We see this project as one where ‘bottom up’ approaches to change are crucial but where there needs to be recognition of the impact and operation of top-down approaches (and the need to negotiate with these). We encouraged project partners to focus on ‘second order’ change. However many participants did not feel confident in trying to bring around second order change, suggesting it was better to work within the existing system. In any service where improvement needs to happen you have almost got to work with it to change it. Manager

We also adopted the empowering approach to change advanced by service user organisations and movements, of enabling people to change from within and work for broader change together without. This embodied the idea of ‘conscientisation’ developed by Paulo Friere (Friere, 1972), based on the process of ‘developing consciousness, but consciousness that is understood to have the power to transform reality’ (Taylor, 1993, p 52). As a team we had experience of working to try and bring about change at personal and policy levels, as service users, practitioners, educators, managers and researchers and therefore valued the importance of connecting the two. To develop our skills and knowledge further in this area we organised a seminar on change for ourselves. This was facilitated by a service user and we explored how change could be achieved, the positive and negative affects of change on individuals, groups and organisations, and how service users could be involved in organisational and practice change.

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Opportunities for involvement The starting point for our project was to create opportunities for the key stakeholders we had identified to become involved in the process of change towards person-centred support. While we did not assume that such opportunities would be lacking, our experience suggested that it was likely to be helpful to augment existing arrangements. In the event we found that such opportunities varied among the eight different partner organisations and that it was important to foster additional ones. We aimed to support the development of existing and new forums. We particularly tried to ensure the involvement of practitioners and service users, so that they could develop, share and negotiate their perspectives and contribute on as equal terms as possible to change. We realised that this was likely to entail the provision of support, information and training by the project team. For service users and practitioners at the partner sites to be effectively involved in the project, there would need to be opportunities to make contact, get together and develop collective working, communication, sharing and articulating their voices. We knew that current practitioners frequently do not have strong inclusive forums locally (or indeed nationally) and Shaping Our Lives’ service user networking and knowledge project had highlighted serious gaps in local service user organisations and barriers in the way of networking (Branfield et al, 2006). We envisaged three possible kinds of forums to provide the basis for people’s engagement and active involvement in a process of change, within and between the eight partner sites and with the overall network of 20 organisations. These were: • Stakeholder forums: where service users, practitioners and managers could each get together and perhaps link up. • Sharing forums: where participants in different sites and from these different stakeholder groups could share their knowledge and experience. • Layer forums: where stakeholders at different levels and in varied roles (senior managers, commissioners, etc), including initially people within the network and later perhaps beyond, including policymakers, social care organisations, etc, could come together to speak directly to each other; to share and exchange views and experience, to develop creative and innovative responses. We see this as one way of connecting bottom-up and top-down developments, drawing on wider learning and social care developments and connecting these with local service users and practitioners. 361

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The process of the project The process of the development project reflected our commitment to creating such forums for involvement at each of the eight key partner sites. There were essentially five main stages to the project (see Appendix One): three sets of meetings and two get-together sessions. The process was one of: • Initial meetings, with service users, staff and managers, checking out the nature of their services, progress on ‘person-centred support’, existing forums and user involvement, their goals and barriers, how we could best work with them to offer support. • Follow-up meetings, with the three stakeholder groups, seeking a detailed account of their understandings of person-centred support and local developments, local approaches to change and people’s experience of services as practitioners and service users. There were many of these follow-up meetings in all partner sites. • Final meetings, with the three stakeholder groups, checking out what if any change there had been in their services since the project started, what impact it had had, their views and progress on personcentred support, the outcomes achieved by support services, what involvement people felt they had, the biggest barriers experienced locally and to share the project’s ‘exit strategy’. These three kinds of meetings all provided opportunities for members of each constituency; service users, workers and managers, to get together and explore person-centred support, as well as in many cases opportunities for the different stakeholders to get together (stakeholder forums). The two get-togethers which involved both the eight project sites and broader network of 12 organisations coming together, grew out of the first phase of the project. • Get-together One, brought service users, practitioners, managers together to share their views and understandings of person-centred support and to discuss what was going on in their different locations, the barriers they were facing and how these could be overcome. • Get-together Two, was an opportunity for participants to check out, discuss and synthesise the findings from our initial analysis of developments in the different project sites.

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A few carers were involved in the first get-together, more in the second. Informal carers were also actively involved in some of the sites. The get-togethers were the main way in which participants were able to talk to and share with people from other sites, both from their own stakeholder group and with the others, providing both the stakeholder and layer forums we had envisaged.

The forums we offered There were also a variety of opportunities for a wider range of stakeholders to make contact and exchange views and experience (layer forums) in different partner sites. For example, in Downhampton, a meeting was set up with self-advocacy groups and people from social services to discuss why people from black and minority ethnic groups weren’t engaging with social services. Carers, service users and social services were brought together. In Camchester, a large meeting for the launch of our project findings on end of life care for older people in residential care brought together ‘expert elders’, carers, people from local authority services, the primary care trust, local hospitals, consultants, palliative care nurses, ambulance services, the Alzheimer’s Society, community matron and the Macmillan nursing service. The project steering group, which met regularly over the two years of the work in Camchester, additionally included the primary care trust commissioning adviser, the acting head of older people’s services, people from the local Partnerships for Older People Projects (Department of Health) and the local voluntary hospice. We set up a service user forum and interviews with managers and others planning the relocation of service users from the Glen Trust. In Middleshire, while there was a focus on people with learning difficulties, local work on person-centred support extended to a range of disabled people and service users. The careers service applied this approach to a wide range of young people at school leaving age. We held focus group meetings with a range of service users, including residents from the housing association, users of the employment project and the local self-advocacy group.

Developmental activities Building on what participants told us in our visits and the first gettogether, we identified and agreed a development programme with them. There were activities common to all sites, as well as site-specific ones. The main element of this development aspect of the project 363

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were a series of Making A Change workshops. Their aim was to support people to be better equipped to be involved in a process of change towards person-centred support. We provided such workshops for service users, practitioners and managers, bringing each of the stakeholder groups from different sites together. In Downhampton, we also organised one for black and minority ethnic carers in response to local needs. Training was offered by skilled external trainers, as well as members of the consortium and was service user-led. Current practitioners were involved in the training for workers. Workshops were evaluated and highly valued by participants. The aim was to support key stakeholders in taking forward person-centred support by offering them information, opportunities for reflection, skill-development, sharing and confidence-building. They were generally organised on the basis of two one-day sessions, with time between for activities and learning. The aims of the service user workshops, for example, were for service users to: • have a better understanding of their rights as disabled people/ service users; • have more knowledge, confidence and control over their life; • have a better understanding of the values behind independent living and person-centred support and the barriers to achieving them. We also undertook a range of other developmental activities with six of the eight partner sites in response to their requests. This included, for example: • In My Roof Housing Trust, organising extra training led by an external expert for staff working with people with dementia, to support service users’ empowerment. • In Camchester undertaking a specific piece of research about end of life care for people in care, including: ° people living in nursing and residential homes ° relatives and carers of people living in homes (or those whose loved ones had recently died) ° practitioners and managers working in homes to find out what they thought were the barriers to person-centred support at the end of life and how these barriers might be overcome. • Working with key stakeholders in the Glen Trust resulted in the writing of three reports for management offering alternatives to the current strategy for reprovisioning, consistent with values of independent living. 364

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• In Grandshire preparing a detailed report on the changing role of disability development workers (DDWs) and a local day centre. The findings were presented to workers, service users and members of the day centre advisory committee to support their involvement in policy development. Thus the developmental approach which we adopted can be seen as consistent with that of service users and other groups seeking their empowerment. We addressed the need for change, both within people – seeking to build their confidence, skills and capacity to achieve change – and the need for broader change – in organisations and services. While achieving change within people is no guarantee that broader change will be possible, in our view such broader change, in line with people’s own preferences, is unlikely to take place unless they are first personally empowered so that they can be part of the change process.

What we learned We gained some useful insights from the development work we undertook. It seemed to confirm some broader issues. We are not suggesting that these findings are new. They are helpful because they add to the available body of knowledge in and beyond social care. For example: • It is possible to involve a wide range of service users, carers, practitioners and managers in change, if this is done in a supportive and accessible way. • Stakeholders in different, potentially conflicting roles, can collaborate and build shared views and understanding in such situations. • People are pleased to be involved in making change. They welcome and value the opportunity. • The process can take a long time – longer than might be expected. • Adequate forums for collective involvement and opportunities for capacity building are key for participatory change to be possible. • There needs to be commitment at every level for change to happen. • The constant churn of organisational and external change makes it difficult to sustain bottom-up developments. • Some change can be achieved by bottom-up approaches, without broader reform, but this is likely to be limited and constrained. • Mainstreaming person-centred support is likely to need systemic change.

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What did we achieve? It is difficult to be certain what we achieved in our efforts to advance person-centred support. It is both difficult to measure change and to be clear what role any particular factor or intervention plays in it. We know that there were significant variations between sites, both in terms of the change they made and the impact we may have had. It is likely that we had little if any impact in New Chance, where, for example, the manager leading on person-centred planning, was made redundant during the course of the project. What is seen to be achieved will also depend on whose judgement is accepted. Most often the dominant accounts of change reflect the concerns of policymakers, politicians and researchers. In this case, we prioritised the viewpoints of service users, practitioners and managers. As we said earlier, while there were variations in emphasis, generally speaking there was remarkable consistency in their views. Early on we came to feel that trying to make change in a time-limited project, particularly one as short as ours, was problematic. Grassroots change always takes longer than change imposed from above, even though it may take more permanent root. Initially, however, our project was only intended to last for two years and for this reason could be expected to replicate all the shortcomings of conventional project-based approaches to introducing and implementing change. From the feedback we received from participants and trainers and our own evaluation of outcomes, we know that there was some change in partner sites and that our project had some impact. We don’t know if these changes were enduring. They were mainly changes within people, but as we have said, this is crucial for making broader participatory change. Thus the project made it possible to develop person-centred support. It: • offered a range of opportunities for reflection and for people to talk to each other in inclusive and accessible ways and for their voices to be heard; • made it possible to develop some consensus about what to aim for, for a good service and person-centred support; • created positive spaces for diverse involvement, enabling different stakeholders to meet and share their experience; for people to learn from each other, particularly practitioners and service users; • provided opportunities for people to become more empowered; • increased people’s confidence and assertiveness; • validated the positive practice which was being undertaken; 366

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• offered opportunities to reflect on and ways of improving personcentred support; • highlighted agreement between different stakeholders and helped build consensus among them. Such ‘softer’ outcomes are the most readily identified. It is more difficult to identify more tangible broader change. Nonetheless some such change did appear to be achieved, although again this also highlighted the complexity of change and that gains might be small-scale. Thus, for example: • Pippin Close paid attention to almost all the issues that emerged for them during the project and discussed many of the issues raised in resident and staff forums and as a result, for example, changed their introductory manual for new residents. We had an impact in the local service, but not necessarily on the large organisation it was part of. Thus such a distinction between effectiveness in terms of local projects and overall organisations needs to be drawn. • My Roof Housing Trust practitioners found the specialist training we offered helpful for their practice and understanding of dementia. However, their organisation did not necessarily change to help practitioners take this forward, for instance, by giving them time to undertake the homework that was part of the training we offered. Thus it was possible to achieve change with individual practitioners, but not necessarily with their organisations and services. • The interventions with the Glen Trust seem to have served as another source of pressure on management, encouraging them to progress rehousing residents in a way more consistent with independent living. This began to take place towards the end of the project. • In Grandshire, the disability development workers incorporated the project’s ground rules for accessible and participatory working into their own ways of working. This highlights the need to be able to address broader structural issues and policy trends and developments if significant change towards person-centred support is to be achieved.

Principles for agency change Our initial work with the partner sites, reinforced by the change seminar we organised, highlighted a series of principles for making effective change supportive of person-centred support. We sought to integrate 367

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these into our subsequent development work with local sites. While we do not intend to be prescriptive, these principles kept recurring and did seem to be helpful. Thus principles associated with the successful implementation of change in social care seemed to include: ff Be clear about the aims and goals of change. ff Avoid unnecessary change and restructuring – ‘if it ain’t broke, don’t

mend it’. ff Understand and take seriously the history which brought people,

organisations, policies and services to where they are. ff Change can be a focus for discontent within an organisation or system,

especially where there has previously been little opportunity for it. ff Be clear that the service user (rather than the service provider or the funder) should be the key driver of services and support. ff Involve service users and practitioners at an early stage. Build in ways to find out what they want. ff Support the involvement of families and friends who support and act as advocates for service users. ff Build in sufficient time to implement change in a participatory way. ff Sustain the involvement of service users, practitioners and other stakeholders throughout the process of change. ff Create opportunities for different stakeholders to negotiate and establish common understandings. ff Encourage effective and participatory leadership. ff Ensure services and support rest on a rights-based approach. ff Recognise that some groups or stakeholders may have a vested interest in not changing and address this issue. ff Understand that change creates fears and anxieties which need to be treated with sensitivity and understanding. ff Support a good two-way flow of information and feedback embracing all stakeholders. It is crucial for any positive and participatory process of change. ff Identify key barriers to change and explore ways of addressing and overcoming them. ff See the process as a cyclical one of change and learning. ff Address and respect difference and diversity for effective and inclusive change. ff Ensure that sufficient learning, training and capacity building are provided to equip people for any new approaches, processes or regimes adopted. ff Ensure that adequate supervision and support are provided for workers expected to implement new approaches. ff Be prepared for unintended and unanticipated consequences of change. 368

Change for person-centred support ff Gain support for change from key people within an organisation, work

for support at all levels and seek champions for change in all strategic locations. ff Change should be evaluated and service users and practitioners involved in such ongoing evaluation.

These principles hopefully offer organisations seeking to work in more person-centred ways some clearer guidance about what is likely to help. But how far all of these are achievable without broader structural change is open to question.

Drawing on other evidence Further insights into the kind of broader change that is likely to be needed, which complements the results of our project, is provided by the findings from a parallel report of a national consultation event which brought together social care policymakers and a diverse range of service users to gain their views and ideas (Beresford and Hasler, 2009). The focus of the event was on transforming social care. Unusually, participants were asked both what kind of social care they wanted to see for the future and how they thought it might be achieved. Thus they reflected both on what could achieve systemic change and what that changed system might look like. There was considerable consistency with the findings from this project.

A strategy for change Service users and policymakers in that consultation event, were generally committed to the principles and values underpinning personcentred support. They identified six main ways in which they felt that better support could be achieved for people in the future. In order of priority these were: Changing the nature of social care Significantly people felt it was important for social care to change and be seen to be improving, if it was to achieve greater priority and to gain more support. They could not separate means and ends. Issues they highlighted included social care developing a broader more holistic approach to people, changing its culture, strengthening its evidence base, working to raise its status and profile, becoming more attractive, improving terminology, introducing new legislation and reforming the benefits system.

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Campaigning and lobbying Campaigning, lobbying, direct action, forming alliances and developing dialogue, were the methods most commonly mentioned as ways of getting improved social care, by bringing pressure to bear to achieve it. Service users were seen as having a central part to play in making this happen. Education Educating a wide range of groups was seen as a key way of gaining support for social care. This included service users and potential service users and service user organisations. Through education, service providers would offer better support and by educating the general public and children from an early age at school, social care would come to be better understood and supported for the future. The media The media were seen as having a vital role to play in raising both the profile of and public interest in social care. They could challenge negative stereotypes and help advance positive values like those of independent living, both through their news reporting and by featuring issues positively in programmes. Challenging the stigma and prejudice attached to those associated with social care While the media were seen as an important means of highlighting social care, they were also seen as playing a major part in perpetuating the stigma and prejudice which people saw as a major problem facing service users and social care. Counter-acting such negative stereotyping was seen as crucial for improving the status of both social care and service users. A stronger voice for service user organisations The increased involvement of service users was also identified as a key way of improving social care support. There were calls for increased support, including funding support for service users’ own organisations, capacity building for such organisations and greater use of support services provided by service user organisations.

An improved system of social care Service users and policymakers identified eight main ways to improve social care in this earlier study (Beresford and Hasler, 2009). While there are some differences in emphasis, overall there is remarkable consistency with what service users, practitioners and managers said to us. What they identified amounted to a changed system of social

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care. Again, in order of priority this is what people felt such social care would need to be based on. Greater user involvement This included increased involvement for people who use services, more support for service user organisations, more training by service users and more user-controlled services. The importance of building service user capacity and developing selfassessment were also highlighted. An improved workforce Three key areas for improvement of the workforce were identified; improving the role, status, pay and conditions of workers; better training for workers and positive changes in the social work role. People wanted social work that was less bureaucratic, with practitioners offering support rather than acting as gatekeepers. Better, more appropriate services People highlighted better access to support and services (including early access to and preventative support), more self-directed support and deinstitutionalisation. There were some concerns about personal budgets and some people stressed the need for them to be supported by an adequate infrastructure. Good standards, a positive approach to risk taking and the importance of equity and reliability in service provision were also stressed. Improved funding People called for more funding for social care and highlighted the damaging effects of inadequate funding. They also stressed the need for existing funding to be used better and differently. Replace a residual with an accessible universal service Linked with this, people felt social care should change from being a means-tested to a universalist service. They called for the removal of narrow eligibility criteria and for social care to be available to all as of right. Policy and provision based on rights and independent living Service users and policymakers stressed that social care should be based on values of independent living and human rights, with service users supported to live their lives on as equal terms as possible, as an entitlement. Policy and provision based on an holistic approach to people They also called for policy and provision which were more locally based, which treated the individual as a whole person, instead of being based on a narrow idea of ‘social care’ needs and which were connected with the wide

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range of other policies that could affect their lives, like housing, health, benefits, education, planning and justice. Improved social care organisations Finally people wanted better social care organisations, particularly organisations which are less bureaucratic and hierarchical, less concerned with profit-making and more accessible (Beresford and Hasler, 2009).

The standards we expect One of our aims in carrying out our project was to identify standards for achieving person-centred support. As we mentioned in Chapter One, the title given to the project by the Joseph Rowntree Foundation, The Standards We Expect, harked back to the first study which had sought to establish what service users and carers wanted from social care workers (Harding and Beresford, 1996). The authors of that report concluded that the standards identified by service users and carers needed to be implemented systematically, arguing: To ensure consistency and equity, quality standards need to apply nationally, and be nationally enforced if the current variability in quality is not to persist. Otherwise, the nature and quality of practice and service received by service users and carers is likely to vary according to the accident of where they live. To be effective, such standards must be more than guidelines. They should have formal, if not legal force behind them. (Harding and Beresford, 1996, p43) The standards which we have developed here from what people have said to us build on an even greater consensus. They are based on the converging views of many service users, carers, practitioners and managers. Taken together they provide a basis for a systematic approach to person-centred support. They highlight the components that will need to be put in place if person-centred support is to be the commonplace outcome of social care, rather than, as it has so far been, an exceptional development, which comes and goes in different places, without any certainty for service users of its reliability, predictability and sustainability. These standards extend to the organisations, funding, working conditions, training and roles, philosophy, culture, values, theories and evaluation of services and support. Standard One: Evaluation 372

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Services and support must be audited to ensure that policies and provision offer person-centred support and are underpinned by its values. Policy and practice should be evaluated employing user-defined measures and outcomes and involving service users in the process. Standard Two: A person-centred value base Services and support should be underpinned by the core values of person-centred support. This includes the values of independent living, the social model of disability and a rights-based approach to providing support and meeting people’s needs. Services must address issues of equality and diversity and be accessible and inclusive. Standard Three: Funding A changed system of funding is needed for social care which ensures that all service users on a sustainable basis can have equal access to person-centred support consistent with the values of independent living, taking account of cultural and demographic change and the growing scale of social care needs. Standard Four:Workforce The wages, terms and conditions of practitioners should be improved to ensure a reliable, sustainable and good quality workforce equipped to work in person-centred ways. They need to be suitably trained, supported and supervised and their views and experience should be valued. Standard Five: Carers Policy and practice based on person-centred support should ensure appropriate support for service users, their families and friends, instead of placing increasing reliance on family and friends to act as ‘informal carers’. Services should support individuals to exercise choice and control while respecting the values of love and mutuality in relationships. Standard Six: Combating institutionalisation Services should support, rather than restrict the human and civil rights of service users. They need to be consistent with human rights and anti-discrimination legislation as well as the Mental Capacity Act. They need to promote service users’ choice and control and resist pressures to institutionalisation, particularly associated with residential and segregated services.

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Standard Seven: Reducing organisational barriers Organisational barriers in the way of person-centred support, created by increasing bureaucratisation and managerialism, must be reduced. They inhibit good practice and restrict service users’ rights, choice and control. The associated emphasis on negative risk undermines the values of independent living and must be replaced with a risk awareness that supports service users’ right to take positive risks. Services should work in partnership with service users to consider risk creatively and proportionately within the context of learning and independence. Standard Eight: Practice Services should support a positive and ongoing relationship between practitioners and service users as key to person-centred support. Service users identify this as the cornerstone of good practice. Particular attention should be paid to building and maintaining such relationships with individuals and groups facing particular barriers, exclusions and discrimination. Practice should be based on a barriers and social model approach. Standard Nine: Ensuring an infrastructure of support An infrastructure of support is essential if everybody is to be able to access person-centred support, including personal budgets and other forms of self-directed support, on equal terms, regardless of their access or support needs, their culture or diversity. This requires the provision of high quality, reliable and independent advice, guidance, information, capacity-building and advocacy. Standard Ten: An holistic approach to people’s rights and needs The achievement of person-centred support based on the philosophy of independent living demands equal access to mainstream life and services, as well as suitable support services, if it is to be consistent with the values of independent living. It requires an holistic approach to people’s rights and needs, rather than people still being expected to live their lives confined to care services. Standard Eleven: Participation Service users should be centrally involved in the planning, development, management, commissioning and evaluation of services and support. This should be made possible for all service users, addressing diversity and including people with all forms of impairment, addressing physical, communication and cultural 374

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access requirements. This demands support for both individual and collective involvement, including the adequate resourcing of service user controlled organisations. If person-centred support is to be achieved, not only must broader public policy be geared to support these standards, but it will also be crucial for providers and commissioners of services and support to be closely guided by them. Such standards, rather than the kind of bureaucratic and professional ‘targets’ and measures whose unhelpful effects we heard about from participants, would need to become the criteria for monitoring and evaluating progress towards person-centred support. They would need to become the standards by which success was measured and the performance of organisations, managers and staff was judged and rewarded. While government has emphasised the importance of user-centred services, empowerment, participation and partnership with service users, these have rarely become the indicators by which workers are judged, rewarded, promoted and paid. More traditional measures have continued to predominate, suggesting that mainstream commitment to participatory values remains largely rhetorical rather than real. This will need to change if there is to be a real move to person-centred support. Writing in 1996, the authors of The Standards We Expect concluded: Much more work remains to be done on how such [user-led] standards could also be put into practice, monitored, evaluated and maintained. (Harding and Beresford, 1996, p 44) This work still has to be done. But what we do know now is that if such standards are to be meaningful and not degraded to become crude bureaucratic measures, then service users will have to be fully involved in the assessment and evaluation of services and person-centred support. This will need to move far beyond the ‘satisfaction surveys’ and consultation meetings that still represent the dominant approaches employed to seek user views. Only in this way is there likely to be the sea-change in social care that participants in our project both wanted and pointed the way to.

Summary This final chapter focuses on change to achieve person-centred support. The project on which it was based sought to find out how people were trying to provide such support and overcome the barriers they faced. 375

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It also offered them support to do this. Local projects involved were developing their own ways of trying to advance person-centred support, but two major and interrelated problems hindered them and restricted these efforts. These were inadequate funding and unhelpful cultures. The conclusion from our project was that if person-centred support were routinely to be offered to all service users by social care, then it would need radical and systemic reform. A new system of social care based on a universalist rights-based approach was likely to be needed. A more detailed discussion of theories and approaches to making change is offered in the chapter. We examine different ideas and approaches to making change in social care, in the context of major changes now taking place and discuss the barriers people identify and how these might be overcome. ‘Top-down’ and ‘bottom-up’,‘externally imposed’ and ‘internally adopted’ approaches to change are examined. We report the approach to change we adopted in our work and the methods we used, working alongside services, practitioners, managers and service users. The chapter discusses what an inclusive approach to making change which addresses diversity might look like. We report on the developmental activities we undertook to support personcentred support, look at what we learned and what we were able to achieve, offering a set of principles for making change in line with person-centred support. Finally, building on the findings from our and other work, we bring together a set of standards for social care geared to providing person-centred support, consider what a fair, sustainable system of social care based on person-centred support might look like and set out strategies for achieving, evaluating and encouraging it. References Arches, J. and Fleming, J. (2006) ‘Young people and social action: youth participation in the UK and USA’, New Directions forYouth Development, vol 111, Fall, pp 81-91. Audit Commission (2001) Change here! Managing change to improve local services, 11 July, London:Audit Commission (www.audit-commission. gov.uk/SiteCollectionDocuments/AuditCommissionReports/ NationalStudies/mpchangehere.pdf Balloch, S. and McLean, J. (eds) (1999) Social services: Working under pressure, Bristol: The Policy Press. Barnes, M. and Wistow, G. (1992) Birmingham Community Care Special Action Project, Final report, 4. Overall conclusions to the Carers Programme and its outcomes, September, Leeds: Nuffield Institute for Health, University of Leeds.

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Barnes, M. and Wistow, G. (1993) Birmingham Community Care Special Action Project, Final report, 7. Summary and overview, March, Leeds: Nuffield Institute for Health, University of Leeds. Barnes, M. and Wistow, G. (1994) User-oriented community care: An overview of findings from an evaluation of the Birmingham Community Care Special Action Project, Leeds: Nuffield Institute for Health, University of Leeds. Beresford, P. (2003) ‘Listen and learn: rebuilding child protection policy following the report of the inquiry into the murder of Victoria Climbié’, Perspectives Column, Community Care, 30 January-6 February, p 18. Beresford, P. (2010) Funding social care:What service users say,Viewpoint informing debate, March,York: Joseph Rowntree Foundation. Beresford, P. and Branfield, F. (2011: forthcoming) ‘Enabling diversity: the route to effective involvement and user solidarity’, in P. Cotterell and M. Barnes (eds) Critical perspectives on user involvement, Bristol: The Policy Press. Beresford, P. and Croft. S. (1986) Whose welfare? From private care to public services, Brighton: Lewis Cohen Urban Studies Centre. Beresford, P. and Hasler, F. (2009) Transforming social care: Changing the future together, Middlesex: Brunel University Press. Beresford, P., Shamash, O., Forrest,V.,Turner, M. and Branfield, F. (2005) Developing social care: Service users’ vision for adult support (Report of a consultation on the future of adult social care),Adult Services Report 07, London: Social Care Institute for Excellence in association with Shaping Our Lives. Boxall, K., Dowson, S. and Beresford, P. (2009) ‘Selling individual budgets, choice and control: local and global influences on UK social care policy for people with learning difficulties’, Policy & Politics, vol 37, no 4, pp 499-515. Branfield, F., Beresford, P., Danagher, N. and Webb, R.(2005) Independence, well-being and choice: A response to the Green Paper on adult social care: Report of a consultation with service users, London: National Centre for Independent Living and Shaping Our Lives. Branfield, F., Beresford, P., Andrews, E.J., Chambers, P., Staddon, P., Wise, G. and Williams-Findlay, B. (2006) Making user involvement work: Supporting service user networking and knowledge,York: Joseph Rowntree Foundation/York Publishing Services. Brindle, D. (2008) ‘Personal budgets may prove a burden’, Guardian Society, 29 October, p 4. Caring Choices (2008) The future of care funding: Time for a change?, London: Caring Choices. 377

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Collins, J. (1992) When the eagles fly, London:Values Into Action. Collins, J. (1993) The resettlement game, London:Values Into Action. Collins, S. (2009) Options for care funding:What could be done now?,York: Joseph Rowntree Foundation. Davies, C., Finlay, L. and Bullman, A. (eds) (2000) Changing practice in health and social care, London: Sage Publications in association with The Open University. DH (Department of Health) (2009) Shaping the future of care together, London: The Stationery Office. Dowson, S. (1998) Certainties without centres, London:Values Into Action. Dustin, D. (2007) The McDonalization of social work, Aldershot: Ashgate. Fitzgerald, J. (1998) Time for freedom, London:Values Into Action. Fleming, J. and Ward, D. (2004) ‘Methodology and practical application of the social action research model’, in F. Maggs-Rapport (ed) New qualitative research methodologies in health and social care: Putting ideas into practice, London: Routledge. Freire, P. (1972) Pedagogy of the oppressed, Harmondsworth: Penguin. Glasby, J. and Littlechild, R. (2009) Direct payments and personal budgets: Putting personalisation into practice (2nd edn), Bristol: The Policy Press. Goss, S. and Miller, C. (1995) From margin to mainstream: Developing user and carer centred community care,York: Joseph Rowntree Foundation. Hampshire County Council (2008) Getting personal: A fair deal for better care and support.The report of Hampshire County Council’s Commission of Inquiry into personalisation and the future of adult social care, Winchester: Hampshire County Council. Haralambos, M. and Holborn, M. (eds) (2008) Sociology: Themes and perspectives (7th revised edn), London: Collins Educational. Harding,T. and Beresford, P. (eds) (1996) The Standards We Expect:What service users and carers want from social services workers, London: National Institute for Social Work. Health Select Committee (2010) Health Select Committee – Third report, Social care, 4 March, London: House of Commons. Henderson, E. and Bewley, C. (2000) Too little, too slowly, London: Values Into Action. Hirsch, D. (2006) Paying for long-term care: Moving forward,York: Joseph Rowntree Foundation. Hirsch, D. and Spiers, P. (2010) Funding care: How can each generation pay its fair share?, Viewpoint informing debate, March, York: Joseph Rowntree Foundation. HM Government (2009) Shaping the future of care together, Green Paper, London: The Stationery Office.

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HM Government (2010) Building the national care service, London: The Stationery Office. Le Grand, J. (2000) ‘Knights, knaves or pawns? Human behaviour and social policy’, in C. Davies, L. Finlay and A. Bullman (eds) Changing practice in health and social care, London: Sage Publications in association with The Open University, pp 48-58. Lewin, K. (1951) Field theory in social sciences, New York: Harper and Row. Lloyd, J. (2008) Funding long-term care: The building blocks of reform, London: International Longevity Centre (www.ilcuk.org.uk/record. jsp?type=publication&ID=38). Lymbery, M. (2001) ‘Social work at the crossroads’, British Journal of Social Work, vol 31, no 3, pp 369-84. Martin, V. (2003) Leading change in health and social care, London: Routledge. McMillan, E. (2004) Complexity, organisations and change: An essential introduction, London: Routledge. Munro, E. (2010) The Munro Review of Child Protection. Part One: A systems analysis, London:The Stationery Office, www.education.gov. uk/munroreview/downloads/TheMunroReviewofChildProtectionPart%20one.pdf Oliver, M. (1996) The politics of disablement, Basingstoke: Macmillan. Oliver, M. (2009) Understanding disability: From theory to practice (2nd edn), Basingstoke: Palgrave Macmillan. Postle, K. (2001) ‘The social work side is disappearing. It started with us being called care managers’, Practice, vol 13, no 1, pp 13-26. Smale, G. (1998) Managing change through innovation, London: National Institute for Social Work. Taylor, P. (1993) The texts of Paulo Freire, Buckingham: Open University Press. Walsham, G. (1992) ‘Management science and organisational change: a framework for analysis’, Omega: International Journal of Management Science, vol 20, no 1, pp 1-9. Watzlewick, P., Weakland, J. and Fisch, R. (1974) Change: Principles of problem formation and problem resolution, New York: W.W. Norton and Co.

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Appendix One

The Standards We Expect. How we did it: project methodology and methods The proposed project Here we set out in more detail, for readers who are interested, how we carried out the project on which this book draws. A shorter account is provided in Chapter One. The Standards We Expect project grew out of one of the programmes of work of the Joseph Rowntree Foundation (JRF), a leading independent funder in the field of social policy. This was the programme of its newly established Independent Living Committee, which built on the influential work of the Foundation’s earlier Social Care and Disability Committee. The call for The Standards We Expect: Developing person-centred solutions’, as it was originally called, focused specifically on work to increase opportunities and expectations for choice and control from policy and practice for people with support needs, in line with the values of the philosophy of independent living, developed by the disabled people’s movement. A programme of interrelated work was developed of which this project was the largest element. The call for applications came out in the summer of 2005. The project was conceived of as a UK-wide change and development project. From the beginning, it was clear that it was not seen as just a research project, although it had clear research elements to it. Its focus was ‘change’, with the aim to offer wider lessons about what people wanted to live their lives more ‘independently’ and how that could be achieved. The tender documents stated that the aim was to: • learn (by working closely with a number of local services and users) ways of overcoming specific and general barriers to person-centred approaches [to support]; • share empowering approaches (within existing resources and the existing practice setting) with a wider network of services, users and other stakeholders; 381

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• comment critically during and at the end of the project on ‘the social care system’ – highlighting the opportunities to bring about change within the present system and/or provide pointers to a more radical revision of the system if that is needed.

Our consortium Our consortium was just one of the groups that got together to bid for the tender. This went through a process of submitting initial expressions of interest, then applications, being shortlisted and then interviewed by the Foundation’s Independent Living Committee. We were made up of a mixture of service users, practitioners and academics, including four organisations and eight individuals. The bid was led by Shaping Our Lives (Fran Branfield). Partner organisations included Values Into Action (VIA) (Jean Collins, later Kiran Dattani Pitt, and then Catherine Bewley), the Centre for Social Action, De Montfort University (Jennie Fleming), and the Centre for Citizen Participation, Brunel University (Peter Beresford). Individual partners included Suzy Croft (social worker, St John’s Hospice) and Karen Postle (then lecturer in social work at the University of East Anglia). Subsequent additions to the team included Jabeer Butt and Ronny Flynn (Race Equality Foundation), Michael Turner (Shaping Our Lives) and Charles Patmore (independent consultant, highly experienced in work with older people). All of the people involved throughout the life of the consortium had relevant experience in policy and practice change at grassroots and national levels; in involving diverse stakeholders, undertaking evaluation. There was a high level of trust and respect among the team, most of whom knew each other and some of whom had worked together before. We wrote in our application that: … social care policy and practice have a key role to play in enabling service users to live on as equal terms as others. UK social care has a history of frequent restructuring which has not resulted in appropriate support being available for all service users systematically, reliably and equitably, addressing their rights, needs and difference. As implemented, emerging personcentred approaches to support continue to be marginalised and undermined. (Branfield et al, 2004)

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The services involved The Joseph Rowntree Foundation and its Independent Living Committee decided the project should work closely with eight organisations as well as linking with a wider network of 12. There was a parallel call for organisations to put themselves forward to be selected for these roles. While those who were successful did not receive additional funding from the Foundation, they could expect to get the benefits of being able to learn from each other and of being involved in a high profile national project. In the event it was never exactly clear on what criteria their selection was made. What can be said is that participating organisations were very varied; some well along a road to developing person-centred support, others much less experienced. As a result and perhaps most helpfully, this was not a project made up of organisations at the vanguard of personcentred support with necessarily a special commitment to take it forward, although there were some such services. This meant that they were much more likely to reflect the realities of the much wider range of organisations and services out there in the wider world and provide a more fertile setting for real-life learning. The partner service delivery organisations

We began work on the project in January 2006. By this time, the sites we were to work with had been identified. After much discussion we decided to anonymise the organisations and services taking part, first so that we could be open and honest when reporting the issues that emerged in the project and second to ensure that service users were not put at risk or made vulnerable in any way, to ensure positive and ethical practice. Below are the anonymised versions of how the different projects described themselves at the start of the project. Pippin Close young persons’ unit is a 10-bedroom residential home for 16- to 24-year-olds providing 24-hour nursing and support for disabled young people, enabling them to spend their transition years in a safe and stimulating environment. The accommodation is purpose-built throughout and includes networked computer facilities. The young people are encouraged to make their own choices and are given appropriate support in achieving their aims and ambitions. There are opportunities to take part in further education courses at local colleges and encouragement to develop independent living skills. As they approach the age of 24, we work closely with the young people and their families to identify their future options. 383

Supporting people Grandshire County day services (for a large rural county in England) We work alongside people of working age and generally aged 18-64 years with predominantly physical and/or sensory disability to promote meaningful opportunities in terms of leisure, education, social support, work and inclusion in decision-making. The vehicles for accessing these opportunities vary and encompass both voluntary and statutory services. The team comprises disability development workers (DDWs) and day service officers (DSOs). The disability development workers are based across the county and work within their locality to link people with opportunities on the basis of their individual aspirations. They also develop local resources that meet the needs expressed by local disabled people where these are not already in existence. The day service officers are based at a day centre and work alongside the management committee, who are users of the centre, to promote and develop inclusive use of the centre as a local resource. We are hoping that the project will provide some new ideas on how to further develop the service along the lines of a person-centred approach. Downhampton, a local council working with the primary care trust (PCT) would like better services for people with learning disabilities from minority ethnic communities. The plan has three main parts:

• carers, especially if non-English speakers, supported by a carers’ group; • a self-advocacy and community support project for users who are hard to reach; • a local authority access team is working with services and workers to provide more ‘person-centred’ support so users and carers are able to access mainstream services.



We want to learn how we can make ‘In Control’ [self-directed support] happen for families who need extra support. Camchester, a National Health Service primary care trust (PCT). The work will focus on end of life care for people living in care homes. We will examine how to empower people to make decisions about where they want to be and how we support them in those decisions. Empowerment and service user involvement is crucial. Membership of the steering group currently includes representatives from the local hospital, primary care trust, social services, care homes and a carer. Learning points may be around the methodology for involving service users in influencing end of life care services, what views service users and their carers have, how to enable staff to facilitate choice and how services can be configured to deliver choice.

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Appendix One: Project methodology and methods New Chance, a national charity helping disadvantaged people to take control of their lives and create a valued future of their choice. We offer day services and support to people living in their own accommodation or housing we provide. We support vulnerable people such as those with mental health needs, vulnerable families, and people who are homeless, or struggling with substance misuse. We have introduced person-centred planning (PCP) across all our services over the past three years and trained staff in this approach. Our clients have found person-centred planning empowering, inspiring and enjoyable. We are keen to meet up with like-minded organisations to share ideas, training and successes. My Roof Housing Trust, a charity providing care homes, housing and support services for 8,500 older people throughout Britain. The care centre is an extra care housing development of 70 apartments with communal facilities, and a dementia day care centre; 24-hour staffing provide general and dementia care. Options to develop our person-centred care include: 

• • • • • •

carer support groups personal histories source housing with care best practice standards and values assessments communicating with people with dementia devise a training programme on person-centred care for managers to implement • possible training for staff to target the five senses Middleshire. Individuals who have been involved in using person-centred planning tools to change their own lives and organisations who have involvement with person-centred ways of working, have come together to raise awareness about how person-centred ways of working change people’s lives for the better. This informal network has hosted awareness-raising and training events focusing on the difficult areas of transition. The network meets on a regular basis. Each of the organisations and individuals involved provide time, skills and resources voluntarily. The network is made up of four local service users with experience of person-centred planning, a training and supported employment project, a housing association, the council learning disabilities services, local careers service and the Association for Real Change. Glen Trust. The care services department sets out to provide innovative housing, care and support solutions for vulnerable adults and older people. The focus of this project is to consider the development of services to

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Supporting people vulnerable adults. Currently we have four residential homes for people with learning or physical disabilities, we are moving forward with a process of person-centred planning to redefine these services into a more supported living model of housing, care and support. We are asking the project to support us in this process, provide us with critical friendship and offer information and advice from the experience of others within the network.

The wider network

There were 12 other organisations involved in the project, which were part of the network for learning and sharing together. They also included people from a range of backgrounds: • • • • •

people of all ages and circumstances people with a variety of physical and sensory impairments people with learning difficulties people with mental health difficulties people who are dying/with life-limiting illnesses and conditions who need services and support • people who are homeless • people with drug and alcohol problems The 20 participating sites covered a wide variety of partnerships and services. The kind of service they provided ranged from residential and day provision, to specific community-based services, for example support with employment, housing and information technology. They included day services, respite care, outreach and development work, advocacy, advice and social work support. They included black and minority ethnic as well as mainstream organisations and groups. They varied in scale from a single residential unit for 10 people, to a network of providers working with hundreds of service users; from large-scale psychiatric provision, to supported housing. They included partners from the statutory, independent and voluntary sectors (and some include agencies from more than one sector). They included health and local authority organisations, but not directly any user controlled ones. Their history and approach towards person-centred support varied. Some of the partners saw themselves as at the forefront of innovation and the implementation of person-centred support. Others were seeking to overcome particular challenges or to modernise their approach. They ranged geographically from the north of Scotland

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to the south west of England and included urban, metropolitan and rural areas.

Our research approach While as we have said this project was not conceived of as a research project, but instead was primarily concerned with development and making change, it did include significant elements of research. The research approach adopted was essentially a participatory one, based on qualitative methods, within an overall framework of new paradigm research. More specifically it grew out of the recently emerged tradition of user involvement and emancipatory disability research. Interest in user involvement in mainstream research, particularly in the fields of health and social care, has developed over the last 10-15 years. This has been reflected in the establishment in 1996 of the government advisory body Consumers in National Health Service Research (more recently the National Institute for Health Research (NIHR) Involve) to advance such involvement and the development of growing requirements among both research funders and research organisations to involve service users as active contributors to research. Interest in more participatory approaches to research among service users, disabled people and their organisations, has a much longer history, traceable to the late 1960s and early 1970s. This grew out of concerns that mainstream research served the interests and purposes of a service system which was seen as disempowering and discriminatory. First disabled people and then other service user movements began to develop their own research initiatives and approaches. These have emphasised: • the equalisation of relationships between the researcher and the researched; • research underpinned by the social model of disability and committed to the philosophy of independent living; • research which prioritised making change, both to support the personal empowerment of disabled people and service users and to achieve broader social change (Barnes and Mercer, 1997; Faulkner, 2004; Sweeney et al, 2009). Three approaches to user involvement in research have been identified. These are:

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• user involvement in research, where service users are involved in a project without necessarily playing a part in shaping its focus, questions, methodology or methods; • collaborative research, where service users and non-service-user researchers and or their organisations jointly initiate and develop a research project; • user-controlled research, where service users and or their organisations jointly initiate run, and control research (Beresford, 2007). As has been said, the consortium team was a collaboration between different organisations and stakeholders. While our research project was therefore in one sense a collaborative one, it was also closely consistent with a user-controlled research, as generally understood (Turner and Beresford, 2005a). The project was led by a user-controlled organisation. It held the budget and shaped and submitted the original application. At the same time, the overall project was jointly and democratically managed by the consortium of four organisations, which also included two university centres and a voluntary organisation where disabled and non-disabled people work jointly together. Service users were closely involved, both as members of the consortium team and as participants in the project, in all its aspects, from shaping its final focus, through to its analysis, production of outputs, dissemination and it is intended, follow-up action. The project’s commitment to individual empowerment, making broader change and the equalisation of research relationships emphasised in disabled people’s and service users’ research, extended to prioritising the perspectives of service users in the project and focusing on approaches to change in which they were central. Thus we made a point in the project of focusing on key perspectives about person-centred support which have tended to be subordinated in mainstream policy discussions and developments. Particular attention was therefore paid to supporting the involvement of service users and face-to-face practitioners, groups which while key, continue to face particular exclusions in this context. During the course of the project unpaid carers were also added to this list. We wanted to find out more about their views, their conceptualisations and their experiences, as a key basis for understanding existing difficulties in the way of personcentred support and ways of overcoming them. Our aim in undertaking the project therefore was to encourage and guide the development in the eight local areas of structures and processes to support social care service users to determine how their rights and needs are and could be met through a process of involvement 388

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and negotiation among key stakeholders, sharing and exchanging with a wider network. We planned to: • identify and develop ways of enabling and promoting person-centred systems which empowered both people who use services and staff; • identify barriers in the eight local areas that operated against personcentred approaches and prevent service users from taking control of their lives; • share knowledge and expertise across all eight sites and the broader network to facilitate the development of services that people want; • identify structural issues and problems that may be beyond the scope of this project and suggest potential solutions; • report the project evaluation (Project Application). Our approach in the project was based on enabling such stakeholders to engage in the process of change through: • identifying existing forums and developing a range of new ones to ensure the involvement of practitioners and service users; • enabling such stakeholders to develop, share and negotiate their perspectives and contribute on as equal terms as possible to the change process. This involved the provision of support, information and training by the project team; • identifying criteria for person-centred support with practitioners, service users and managers, as well as exploring barriers that were impeding it and ways in which these barriers can be overcome (Branfield et al, 2004, p 5). We wanted to explore bottom-up and top-down aspects of change and the importance of service user and practitioner ownership of change. We sought to identify barriers to change, including structural issues that might be beyond the scope of this project, in order offer possible solutions. We wrote in our proposal that: We see this project as one where ‘bottom-up’ approaches to change are crucial, but where there needs to be recognition of the impact and operation of top-down approaches. (p 13) and we recognised the need to negotiate the two. The project and this book drew very heavily upon what participants in our project had to say. We place particular value on their first hand 389

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comments and accounts. Their quotes make up a major part of the text. For simplicity’s sake and to minimise the risk of people being identifiable, we have only mentioned whether they were a service user, carer, manager or practitioner when quoting them. We have retained details of the origins of all comments and quotations and can trace and confirm them. Such quotations come from the wide range of data sources that were involved in the project. This includes: • initial, follow-up, planning, development and closure meetings and visits with partner projects; • other interim communication during the project; • seminars and workshops which we organised with different stakeholders; • the two get-together events bringing together all 20 participants in the project. This included people contributing through individual interviews and group discussions, through anonymous post-its at meetings and the ‘video-box’ we used at get-togethers. Thus participants were able to contribute in different ways, as they felt comfortable.

Evaluation There were two related aspects to evaluation in the project and we sought to address both. First, was evaluation of the activities and responses of partners and second, of evaluation of the project which we were carrying out, to analyse and check its methodology and methods, strengths and weaknesses. Both activities were ongoing, with regular feedback to partners and the wider network. We identified a series of data streams for evaluation and sought to gather information in a systematic way.

How we carried out the project Consortium meetings The project was steered through the consortium of members involved in carrying it out. Throughout the project, consortium members met regularly every six to eight weeks. In the early meetings, our discussions focused on:

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• the recruitment of our project worker (key to carrying out the work and who was finally appointed in June 2006 at the second round of interviewing); • formalising how we were to work together; • agreeing ground rules and getting all the procedures and processes (record keeping, finances, administrative support, etc) in place, to enable us to undertake the work. As these important issues were sorted out, we spent more time talking about the sites, the work at the sites, establishing what themes were appearing from the work and agreeing actions that would apply to all the sites; as well as considering the unique situations and contributions of individual sites and particular responses that this might require. It was at these consortium meetings that the two get-togethers were planned, the idea for the training emerged and developed. It was here we discussed draft papers and agreed outputs and dissemination strategy for the Standards We Expect project. These meetings were never solely administrative. The ideas and approaches for undertaking it were developed there, as well as practicalities identified and dealt with. The consortium worked well together. There were of course disagreements, and at one point a major conflict, but these were successfully resolved. Having agreed an informal ‘flesh and blood’ ethically based agreement, as well as a formal legal contract, helped make this possible. Significantly, differences did not seem to follow from our different stakeholder roles. Trust was rapidly established and service users and others generally worked effectively with each other, over a long period of time.

The Change seminar Change was a key issue for the Standards We Expect project. It was not only concerned with making change, but operating in a context of continual change – at policy and practice level and within the local projects with which we were working. In supporting the development of person-centred support the project was inherently involved in, and witness to, processes of change within project partner services. The project team had previous experience of various kinds of service, organisational and policy change as service users, practitioners and researchers of social care. However, to develop our skills and knowledge in this area we organised a specific seminar on Change for ourselves. This was a workshop facilitated by a disabled consultant, where we considered change, its meanings, how it can be achieved, service user 391

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involvement in organisational and practice change and positive and negative affects of change on individual, groups and organisations. From this seminar, we produced the following minimum core principles of a change policy which we integrated into our work with sites: • Build in ways to find out what service users want. • Choice and control - when change enables these, it is positive, when it doesn’t, it is negative. • Work for change consistent with person-centred support/ personalisation. • Recognise the importance of individual relationships between service users and their face-to-face workers – time and again this was rated as the key element of a good service by service users. • Draw on ideas coming from service users not being led by service providers. • Involve staff at an early stage. • To succeed change needs ‘multi-level buy in’. • See change as a cyclical process - a cycle of change and learning (so change is not a one-off experience fixed in time). • Change needs the involvement of families and carers who support and advocate for service users. • Be clear that the service user (rather than, for example, the local authority) is the ‘customer’. • Adopt a rights-based approach to change. • Be aware of, and have respect for, the history of a situation. • Be aware of people who may have a stake in not changing. • Be clear about the point of the change.

Project Advisory Group and the Joseph Rowntree Foundation During the project we also had the support and guidance of both a highly experienced and supportive link worker from the Joseph Rowntree Foundation, Alex O’Neil, principal research officer and a Project Advisory Group. The Foundation generally establishes an advisory group for projects it funds. Their role is a genuinely advisory and supportive rather than directive one. In this case the plan was to use the members of the Independent Living Committee (through which this project was funded) as the Advisory Group. However, this was not entirely successful, as it was a large group with a different overall role. This led to some difficulties and these meetings ceased. The worker and members of the four organisations in the consortium attended advisory meetings where the progress of the project was discussed and 392

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issues arising explored and followed up in more detail. The project also had some contact with the Service User and Carer Reference Group set up under the Independent Living Programme.

The project and ethical issues We had to address two sets of ethical issues in undertaking this project. These were first our commitment to adopting an ethical approach in our work and second, addressing the formal ethical procedures that such research projects are required to undergo. Unfortunately, the second was not always consistent with the first and did not always facilitate our desire to work in ways consistent with the involvement and rights of service users and other participants. As members of the project consortium, we regarded working in an ethical way as crucial, particularly since our research approach was committed to equalising research relationships. We drew on the guide for developing ethical survivor research produced by Alison Faulkner and supported by the Joseph Rowntree Foundation (Faulkner, 2004), as well as the insights offered by emancipatory disability research (Barnes and Mercer, 1997). There were many aspects of the design of the research where we attempted to reduce the potential power imbalances between researchers and participants. These included, for example: • giving people as much appropriate information at the start as possible, so they can make an informed choice to take part or not; • seeing consent as a process, that can be assessed on an ongoing basis; • using a guided conversation schedule so that participants are more in control of what they discuss in the interviews; • the opportunity for participants to have their voice heard directly and undiluted; • holding interviews and discussions at a time of participants’ choosing and also offering them the choice to have someone with them if they wished; • the use of research trainers with relevant direct experience. Our concern with ensuring an ethical process, led us to make a number of important decisions within the project. These included the development of ‘disclosure of abuse’ procedures, and a value-based position on payment of service users. Informed consent was seen as central, as was protecting the anonymity of participants. Confidentiality and anonymity were treated as important, particularly when working with people who might be at risk or liable to be disempowered, for 393

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example, those living in residential provision. We felt strongly that we had an ethical duty not to abuse the trust of people who spoke to us. These principles presented particular challenges, for example, when we wanted to send back transcripts of conversations with residents of care homes who needed support to read them. However, with the cooperation of the services themselves we found ways of overcoming such difficulties. The development of a shared definition of person-centred support and the use of service user defined outcome measures were also key to our approach. This meant that feedback to participants became particularly important. At a number of stages in the project, we produced reports for local sites, taking care to ensure that they were accessible to them. This kept them up to date with how the ideas from the project were developing and also enabled them to see how their experiences related to other people’s. The two get-together events were also an important part of this process. Another example of the consortium’s concern with ethical process was the consideration which we gave to what happened after service users, carers and practitioners had been to the capacity-building workshops we provided. We were concerned that the training might encourage service users’ sense of empowerment without us necessarily being able to offer any longer term back-up to individuals to support them. Ideally we would have linked service users with a local organisation of disabled people to provide this support. However, we were not aware of such groups in every area; it was hard to know how supportive local groups of disabled people could be, given their often limited resources and lack of security and not all are truly ‘user controlled’. To help address this issue, we produced the publication, Person-centred support:A guide for service users, which was distributed to all service users, including those who took part in the training, those who didn’t and others, both through the 20 organisations in the network and through the consortium organisations’ websites. Another aspect of the project which we were not able to undertake in line with the ethical approach to which we were committed related to paying participating service users. The problems we encountered were significantly related to the continuing barriers which operate in the way of paying service users on benefits to participate. This continues to arise because of inconsistencies between government benefits policy and its rhetorical commitment to patient and user engagement. We had intended to pay service users for their time and expertise. We sought to follow the existing policy and practice of Shaping Our Lives. However, this was not possible as there were a number of problems we could 394

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not resolve. This included how to pay people in practice where they didn’t have a bank account, or didn’t want to give their bank details; what rates of pay we should offer and how we could differentiate and ensure equity between different types of involvement and, perhaps most important, how we were to ensure that everyone would have adequate information to understand how payment might affect their benefits. After many long discussions, we reluctantly realised it would not be possible to pay people as originally intended. This was mainly because of the serious problems that continue to apply because of problems with government benefits policy and practice. This does not provide a clear and secure basis for paying people who get involved, even though government emphasises the value, importance and in some cases requirement, for such participation (Turner and Beresford, 2005b). However, the project did meet everyone’s costs and expenses for all relevant activities. Where service users were employed for specific tasks, for example, as trainers or advising on the accessibility of written outputs, they were of course paid appropriately for their work.

Ethical approval Ethical procedures in health and social care research have long been problematic. While they have been developed with the ostensible aim of safeguarding research participants, this is often not how they are experienced. Instead they frequently seem to obstruct and restrict user involvement in research. Alongside developing our own ethical approach to the project, we had to apply for formal ethical approval for its research. Initially there was some confusion and difficulty in getting advice about how best to gain appropriate ethical approval for a complex project such as this, involving a wide range of services and service users, some coming under the aegis of health, some under social care. Both members of the consortium and our funder the Joseph Rowntree Foundation approached the Department of Health to seek clarification. We also spoke with the Association of Directors of Adult Social Services (ADASS) and the ethics committees of our associated universities. We had wanted to involve service users as early as possible in the project in line with our participatory research approach. Procedures have changed since then, but this lack of transparency and difficulty in getting clarification about how best to proceed, created serious delay in our being able to make contact with service users, undermining our original participatory aims. Ultimately we applied for ethical approval to the ethics committee of the Faculty of Health and Life Sciences at De Montfort University. 395

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This was secured and a series of information leaflets and consent forms in accessible formats were produced and approved, which helped ensure the informed consent of all participants. However, we were still concerned about the complexity of information researchers are required to include in information leaflets, which we felt could undermine informed consent, or put people off. We were also concerned at suggestions that it could be considered ethical for someone to sign consent to participation on someone else’s behalf – a position we could not agree with. However, with the support of the chair of the ethics committee these issues were resolved to the best of our ability. The researchers took these documents on visits to projects and went through them with people to ensure they had had the opportunity to ask questions and fully understand what their participation entailed. The work in Camchester also required National Health Service governance approval (which took many months and meant we nearly had to abandon this part of the project) and separate approval from De Montfort University. The complex processes of gaining ethical approval undoubtedly had a negative impact on the project, as it altered the order in which we undertook actions from the ideal and value-based model we intended, to the pragmatic. It meant we could not involve people from the start – a key criterion for good involvement. It also had a significant impact on the project in terms of the time and resources it took.

Work with the project sites Each project site had a member of the consortium as its key contact, and the project worker also worked with all the eight core sites. We also established a system of pairing within the consortium, so each site had the benefit of the detailed input of two members of the consortium group, as well as the project worker and the broader input of the whole consortium through discussions at meetings, reviewing of documents etc. This not only maximised support and continuity for the project sites. It also offered support to members of our consortium team, linking with local projects. We organised a series of meetings with partners, with services users, practitioners and managers exploring with them what they wanted from the project and their ideas about person-centred support, the barriers to it and how these could be overcome. We then reported back to partners, first agreeing findings from each site and then synthesising findings from all eight. These initial findings were then the basis of discussion at the first get-together in November 2006. This was a one-day forum 396

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of service users, practitioners and managers from all 20 service sites, to share and discuss their experiences and gain a shared understanding of person-centred support and the issues facing it. Many visits to the core projects sites were made. For the initial and final visits, common guided conversation schedules were agreed and used for all sites. For other visits, we used previous work with the site to formulate our discussions. Each visit was audio recorded and partially transcribed to enable thematic analysis following a grounded theory approach (Glaser and Strauss, 1967). A report of each visit was returned to whoever had taken part for their comments and any amendments. Where needed, the format (but not the content) of reports was changed to enable access. For example, larger fonts were used or reports were audio taped. We organised a programme of training in response to the priorities identified by participants at the first get-together. This constituted a major element in the developmental aspect of the project. We delivered a programme of ‘empowerment’ training and capacity-building for each group; service users, practitioners, carers and managers to support the development of person-centred support. All the training was user-led (with skilled and experienced user trainers involved in each training session) and built on the learning from the project and the needs identified by the sites. Six two-day sessions were run for service users, two two-day sessions for practitioners and one one-day session for all managers were run; in Camchester and Downhampton sessions for carers were also run. In November 2007, we organised a second get-together which again brought together the partners and broader network to share, discuss and develop the findings of the project. Workshops also discussed the key lessons they had learnt from the project and how a person-centred approach could be supported and successfully taken forward locally and nationally. Common activities for all core projects We undertook a range of common activities with all eight core projects. These included: 1. A series of project visits and a number of meetings with service users, practitioners and managers. 2. Synthesising issues raised in reports on each site which were fed back and discussed with all groups there.

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3. The first get-together, which explored and discussed the combined issues from all sites and led to the formation of a shared definition of person-centred support and what it entails. 4. Further project visits to discuss the definition agreed at the gettogether from each stakeholder’s perspective. 5. The development of ‘empowerment’ training/capacity building for all stakeholder groups. The empowerment training for service users was intended to enable them to be able to respond to the new approach and ways of working we were seeking to take forward. Such a process of empowerment or personal development makes possible the kind of transformational change, which the project aimed to promote. The ideas for the training arose from the first get-together. 6. The second get-together asked people from the 20 projects to come to an event to hear more about what we have found out about person-centred support and to have their own say about it with us and each other. We presented a summary of key findings of the project as a basis for small group discussions. 7. Final visits were held with all projects, when we asked a set of core questions about change and impact and how people felt that services could support service users to live the life they wanted to live and enable them to do what they wanted to do. 8. All projects were sent a final letter thanking them for their contributions to the Standards We Expect and received copies of the guide which we produced for service users on person-centred support. The guide was written specifically for service users who took part in the project, either by being interviewed, attending meetings, or by taking part in the get-togethers or workshops. It reminded readers what the project was about, what we found out and gives important information about the themes that emerged, including details about how and where to find out more.

Additional individual site interventions As well as these activities common to all eight sites, we also undertook specific dedicated work with different sites according to what they wanted from the project. This included: Camchester The work in Camchester focused on end of life care, particularly around admissions to hospital from care homes at the end of life and involved undertaking a small qualitative research project. The work was led by a steering group of local experts ranging from relatives and carers of people living in nursing and residential homes, 398

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to primary and secondary care professionals. Its subject, choices in end of life care, grew from local concerns that people in nursing and residential homes were very often admitted to hospital during the final phase of life. These admissions could be at odds with residents’ previously expressed wishes. The research project collected the views of: • people living in nursing and residential homes; • relatives and carers of people living in homes (or those whose loved ones had recently died); • practitioners and managers working in homes. The aims were to find out what participants thought were the barriers to support being person-centred at the end of life and how these barriers could be overcome. The very active local steering group guided the research, while the individual and group interviews and report writing were carried out by the Standards We Expect project. The report Standards We Expect – End of life care is available as an output from the project from the Shaping Our Lives website (www. shapingourlives.org.uk). It was presented at a local event and informed an action plan for local change. Grandshire We made a number of visits to Grandshire and spoke with a wide range of stakeholders. The work with the site focused on the changing role of the disability development workers and the local day centre for disabled people. Managers and staff while confident about the services being provided, were by no means complacent and were open to new learning. A final report for the site was produced identifying 13 areas where improvements could be made, as well as areas which seemed to us to be inherently problematic. Our major area of concern was frontline staff in the social work team, who seemed to be struggling against a number of obstacles to try and offer a personcentred service. A report about the work and findings in Grandshire was produced and presented to the managers and workers and service user members of the management committee of the day centre. My Roof Housing Key concerns expressed by staff and managers at My Roof Housing related to service users with dementia being truly empowered to say what they wanted and really being able to give informed consent. One manager talked about how difficult it was to know always what service users felt about the day centre and whether they really wanted to come. For some it might be an issue of not knowing whether they really understood why they were there. Concern was expressed that the day centre should be there to meet 399

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their needs, rather than just being a service which helped out families supporting people with dementia. We discussed and then explored the idea of creative training for service users with dementia around empowerment. Was that possible? Are there people who have the skills to do this kind of work? After discussion, it became clear that what would be most helpful for My Roof Housing Trust would be extra training in working with dementia for face-to-face practitioners. Such training by people with specialist skills, was organised by the project and took place over a period of weeks at the day centre. The aim was to look at creative ways of working with people with dementia that acknowledged the effect that dementia had on them without assuming it defined them. Staff found this training helpful, increasing their confidence and understanding about why people were coming to the day centre; helping them to recognise the importance of getting to know people, their past lives and what contributed to their personalities and their history. This often helped explain their behaviour at the day centre. It also enabled staff to work with them better, to create a calm, safe and enjoyable atmosphere for service users, with staff confident in their abilities to work in more empowering ways. Glen Trust A considerable amount of work took place with staff and residents of the Glen Trust, particularly relating to the philosophy of independent living. There were individual discussions with managers, staff and an external consultant concerning prospects for working with local authority purchasers to replace existing ‘care homes’ with more independent housing. A monthly meeting was set up for service users who were interested in more independent housing. This was supported jointly by Standards We Expect workers and a local advocacy worker. Sometimes managers were invited by the residents to parts of the meeting to answer their questions. A former care home resident, who had been living independently for five years, came and replied to service users’ questions about problems which they envisaged from living more independently. After five meetings, the project withdrew, leaving the local advocacy worker to continue the meetings. Three internal reports – two short and one substantial – were written by the Standards We Expect team for the overall management of the provider service in response to initial requests from the site. These offered alternatives to the provider’s current strategy to get agreement from the local authority purchasers to replace the care homes with more independent housing. They also provided general feedback on the service.

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Middleshire The work here was carried out with a group of service providers established to promote person-centred support in the region. While there was a focus on people with learning difficulties, the work on person-centred support in the area also included a variety of disabled people and service users, with the careers service taking it to a wide range of young people at school leaving age. Focus group meetings were held with a range of service users including residents from a housing association and users of an employment project and local self-advocacy group. The focus group meetings looked at how person-centred support was being approached in the region, ways in which it was successful, barriers that had been overcome and those that remained. A second round of meetings at the end of the project looked at the changes that had taken place during the time of the project. There was an overall sense that considerable progress had been made, but also concern that resource issue might undermine this. There were some instances of service users working together to support each other to undertake social activities, where staff levels were reduced. Downhampton The project here offered people with learning difficulties, family members and people from services, opportunities and space to come together to discuss the problems they faced in the provision of person-centred services to the local Mirpuri (Pakistani) community. Issues raised concerned relationships and trust, language and cultural understanding. People with learning difficulties from the Mirpuri community in Downhampton tended to be highly marginalised, so it was doubly important to have good relationships with family members in order to reach them. Trust had been built up by the workers connected to the service user group, but much of this was tied to individuals, with the danger of the link being lost if people moved on. One problem that emerged was that many older parents didn’t understand, trust or know how to make demands on the education, social care and welfare systems. Where they had limited English, services were poorly geared up to respond to them. Gender issues also emerged, with women with learning difficulties tending not to attend mainstream day centres and services and male support staff finding it difficult to reach female carers, even the community-focused male staff from the self-advocacy organisation. Nonetheless, people thought the independent community-related staff made a huge difference in bridging the needs of the community and services, in building solid relationships of trust, in enabling outreach

401

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work and in providing a space for people with learning difficulties to develop their capacity for having control through their own group. There was agreement that the local authority should continue to provide funding and commitment to community-related staff and support them to be trained in value-based, person-centred working and services. People with learning difficulties wanted more control of their own organisation, so they could develop self-advocacy experience and skills. In the other two core partner sites with which we worked, no specific development work took place. However, all projects took an active part in all the common activities. Pippin Close, for example, acknowledged and addressed in some way all the issues raised in the reports and events from the project.

Who took part in the Standards We Expect project At the eight core sites, the following numbers of people took an active part in the project:

Pippin Close

Service users Relatives 14 0

Staff 15

Managers 1

Total 30

Camchester

8

14

15

0

37

Grandshire

11

0

20

7

38

New Chance

1

0

1

0

2

My Roof Housing Downhampton

10 20

0 25

12 3

0 1

22 49

Glen Trust

20

0

15

0

35

Middleshire Total

20

0

12

0

32

104

39

93

9

245

Of these 22 service users and 25 relatives were from black and minority ethnic communities (all the service users and relatives in Downhampton were from black and minority ethnic communities). Twenty-four of the 93 staff were from black and minority ethnic communities, whereas none of the managers were. Thus a total of 28% of these participants from the eight sites came from black and minority ethnic communities. There were also a considerable number of participants who were born outside the UK who are not included in the figures for members of black and minority ethnic communities. 402

Appendix One: Project methodology and methods

The training programme was attended by over 100 people. Of these there were 50 service users, 15 carers, 39 practitioners and 13 managers. Sixty-five people came to the first get-together and 48 to the second. Clearly there are overlaps as some people came to both. Some people attended both get-togethers and also took part in activities at their site as well. At the same time the get-togethers also included people from the wider network of 20 sites, who would be additional to participants from the partner sites. The consortium also estimated that 100 people in Camchester, 40 in Downhampton and 200 in Grandshire also took part in meetings, contributed information to the project, or were in contact in some other way. It is difficult to give an overall total of people who were in some way involved in the Standards We Expect project, because of the overlaps of involvement in different activities and settings. But it clearly engaged several hundred people from key stakeholder groups, addressing diversity in many ways in the process.

Data analysis We collected a considerable amount of data for each project site and more again from consortium meetings, Project Advisory Group meetings and so on, all of which were recorded. From an early stage, we identified what we saw as key data sources to maintain both as a basis for development work and evaluation. This data was in the form of written records, sound files as well as diaries, video clips and photographs. The project worker kept a record of all the data available. As information collection came to an end, the project worker took the lead in involving all the consortium members in identifying themes arising from the data. These were continually checked (for example, through the second get-together, at site visits and through email and face-to-face discussion among consortium members). The worker then collected the data under the themes and cross-referenced and linked themes which overlapped and produced a draft document based on this analysis. It was this that formed the basis for the production of this book, Supporting people.

Standards We Expect: outputs and dissemination The purpose of the Standards We Expect project was to advance our understanding of person-centred support, its development and implementation. Therefore it was itself actively concerned both with finding out and making change. From early on, considerable thought was given to how to maximise the impact of the project, both within the 403

Supporting people

consortium and more generally in the Joseph Rowntree Foundation, as part of its dissemination and ‘influencing’ strategy for its overall independent living strategy. The Standards We Expect dissemination strategy emerged as a result of frequent discussions both within the consortium and in negotiation with the Foundation. There have been two phases to this strategy, of which the publication of this book is part of the second phase. The project produced several outputs in its first phase of operation. First to be created was the Standards We Expect website which was set up in August 2007 after careful testing and piloting with service user groups and projects. In July 2008 the Joseph Rowntree Foundation published both in hard copy (to facilitate access) and as a free download Person-centred support:What service users and practitioners say, as a 132-page report and also in an accessible summary version (Glynn et al, 2008). Person-centred support: A guide for service users was produced as part of the Standards We Expect’s exit strategy and was sent to all service users who had been involved in the project, as well as when requested by individuals. These outputs were available on the project’s website. Forum and discussion groups were available during the data collection period of the project. The website closed in 2009 and all publications were then made available at the Shaping Our Lives website (www.shapingourlives. org.uk). By November 2008 the team had presented papers reporting the project’s initial findings at three major international conferences (International Association of Schools of Social Work in Durban, South Africa, International Disability Studies Conference, Lancaster, UK, and National Institute for Health Research (NIHR) Involve on involvement in research, in Nottingham UK) as well as reporting them at numerous other national and regional policy, practice and research conferences. These findings were also included as written and oral evidence submitted as part of the government Green Paper consultation over the Green Paper on the future of social care funding by the Joseph Rowntree Foundation and to the Health Select Committee Inquiry into the future of social care by Shaping Our Lives (DH, 2009; Health Select Committee, 2010). The main outputs of the project were produced as part of its second and final phase. As well as this book they included a series of linked publications, building on the project’s findings. These were: • Person-centred support: A service users’ guide • Person-centred support: A guide to person-centred working for practitioners 404

Appendix One: Project methodology and methods

• Making change: A guide to running successful and accessible workshops and training • Person-centred support: Choices for end of life care: Report of a research study • Working towards person-centred support: A local case study • Supporting People: Summary in easy words and pictures • Joseph Rowntree Foundation Findings (key points from the project) • Joseph Rowntree Foundation Person-centred support –The big issues All these are available from the Shaping Our Lives website (www. shapingourlives.org.uk), the Joseph Rowntree Foundation website (www.jrf.org.uk) and The Policy Press website (www.policypress.co.uk). We are also planning two other kinds of outputs to try and share the learning about person-centred support from this project and maximise its impact. The first is to organise a series of events which develop discussion about the project’s findings and give people opportunities to hear about, consider and discuss them. We are committed to maintaining the project’s commitment to actively involving service users, practitioners, carers and managers. At the same time we are anxious to make an impact on high-level policymakers and power holders. This approach is consistent with our view that both top-down and bottom-up approaches to change are important and need to be addressed, influenced and interconnected. We are anxious to influence local, national and international agendas for supporting people at both policy and practice level. To this end, second, we will also be seeking to disseminate the project’s findings at professional, practice, policy, research and service users conferences and events as much as possible. In this way we hope that we can reflect the emancipatory methodology on which the project has been based and justify as far as possible the time, commitment and expertise that many people have already invested in this project in many different ways, particularly as participants. References Barnes, C. and Mercer, G. (eds) (1997) Doing disability research, Leeds: The Disability Press, University of Leeds. Beresford, P. (2007) ‘The role of service user research in generating knowledge-based health and social care: from conflict to contribution’, Evidence & Policy, vol 3, issue 4, pp 329-41. Branfield, F., Collins, J., Beresford, P. and Flemming, J. (2004) Proposed Registration Form:The Standards We Expect, London: Shaping Our Lives. DH (Department of Health) (2009) Shaping the future of care together, London: The Stationery Office.

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Faulkner, A. (2004) The ethics of survivor research: Guidelines for the ethical conduct of research carried out by mental service users and survivors, Bristol: The Policy Press. Glaser, B.G. and Strauss, A.L. (1967) The discovery of grounded theory: Strategies for qualitative research, Chicago, IL: Aldine Publishing Company. Glynn, M., Beresford, P., Bewley, C., Branfield, F., Butt, J., Croft, S., Dattani Pitt, K., Fleming, J., Flynn, R., Patmore, C., Postle, K. and Turner, M. (2008) Person-centred support: What service users and practitioners say,York: Joseph Rowntree Foundation/York Publishing Services. Health Select Committee (2010) Social care: Third report of Session 2009-10 Vol 1, House of Commons Health Committee, London: The Stationery Office. Sweeney, A., Beresford, P., Faulkner, A., Nettle, M. and Rose, D. (eds) (2009) This is survivor research, Ross-on-Wye: PCSS Books. Turner, M. and Beresford, P. (2005a) User-controlled research: Its meanings and potential, Final report, London, Brunel and Eastleigh: Shaping Our Lives, Centre for Citizen Participation and Involve. Turner, M. and Beresford, P. (2005b) Contributing on equal terms: Service user involvement and the benefits system, Adult Services Report 08, London: Social Care Institute for Excellence.

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Appendix TWO

The Standards We Expect: associated publications Other publications linked with the Standards We Expect project: • Person-centred support:A service users’ guide (foreword by Ossie Stuart, Disability consultant) • Person-centred support: A guide to person-centred working for practitioners (foreword by Moira Gibb, Chair, Social Work Reform Board) • Making change: A guide to running successful and accessible workshops and training (foreword by Pete Fleischmann, Head of Participation, Social Care Institute for Excellence [SCIE]) • Person-centred support: Choices for end of life care (foreword by Eve Richardson, Chief Executive, National Council for Palliative Care) • Working towards person-centred support: A local case study (foreword by Simon Heng, Disability activist, writer and consultant) • Supporting people: Summary in easy words and pictures (forewords by Mark Brookes, Consultant with learning difficulties and Peter Hay, President elect, Association of Directors of Adult Social Services [ADASS]) • Joseph Rowntree Foundation Findings (key points from the project) • Joseph Rowntree Foundation Person-centred support –The big issues

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Appendix One: Project methodology and methods

Appendix three

The Standards We Expect. How we did it: project materials and resources Appendix One contains more information about how we carried out the project, the Standards We Expect on which this book is based.The accent in the project was very much on people’s direct and meaningful involvement – as service users, carers, practitioners and managers. As well as being a participatory research project, it was also a development project.This meant that a constant concern of ours was both to enable as wide a range of people to get involved in it – including people facing many barriers – and also for the project to be able to make a difference to them. For this reason we had to pay particular attention to encouraging and supporting people’s involvement and meeting their access and support needs.We knew from experience that this could be a complex matter that required careful planning and thought.We needed to ensure people also had as clear an idea of what we were trying to do as possible, so that they would feel comfortable getting involved and more likely to want to do so. We therefore developed plans and policies for their involvement and to ensure that it was involvement based on clear information and informed consent.We also wanted to make the most of the experience and expertise that participants had to offer.We produced a considerable amount of documentation – accessible documentation – which set out and helped us to record what we were doing, what we wanted to find out about and what we were learning. We needed to be clear among ourselves – as well as being clear to participants. This resulted in a plethora of schedules, guidance notes and protocols. We thought it would be helpful for these to be available for interested readers who might want to carry out a similar kind of project themselves or who wanted as clear an idea as possible of how we carried out this project. To enable people to access this material, we have placed this series of 27 appendices on the Supporting people book page at www.policypress.co.uk. The material includes a significant portion of the documentation associated with the Standards We Expect project. 409

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This is not by any means all the documents, drafts and reports we produced. But hopefully it does give a taste of how we approached the work. We hope it will encourage others to carry forward work which involves key stakeholders in advancing person-centred support and helps make it as productive and positive an experience as possible for all concerned.

Online appendices Background information 1. 2. 3. 4. 5. 6. 7. 8. 9.

Equal opportunities monitoring form Equal opportunities statement Adult protection procedures for consortium members Project confidentiality statement Sample information sheet about the project for workers in partner sites Project payments policy for service users Suggested ground rules for meetings Information about the website Consent form for service users with support needs

Partner site visits 10. Initial information for partner sites and members of the project network 11. Agenda for first partner site visit with service users 12. Agenda for first partner site visit with practitioners and managers 13. Support available to partner sites after first visits 14. Questions for second partner site visit

Get-togethers 15. Agenda for the first get-together meeting 16. Evaluation form for first get-together meeting 17. Report on the first get-together 18. Access information form for participants 19. Evaluation form for second get-together meeting

Training material 20. Guidance for trainers regarding adult abuse 410

Appendix Three:methodology Project materials and resources Appendix One: Project and methods

21. Outline of training programme for managers 22. Service user capacity-building workshop 23. Grandshire sample service user training/capacity-building workshop programme 24. Programme for sample practitioner training event 25. Making A Change: information leaflet for service users 26. User involvement scenarios for practitioners’ training 27. Information from Downhampton carers workshop

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