Mental Health Care Services in Community Settings: Discussions on NGO Approaches in India 9811391009, 9789811391002

Table of contents :
Acknowledgements
Contents
About the Authors
List of Figures
List of Tables
1 Mental Healthcare Services in the Community: Where Does India Stand?
1.1 District as the Unit of Implementation: District Mental Health Programme
1.1.1 How Is Community Mental Healthcare Conceptualised by the WHO and DMHP?
1.1.2 Integration of Mental Healthcare with Primary Healthcare: Sakalawara and Raipur Rani Blueprint
1.1.3 Implementation of District Mental Health Programme
1.1.4 Criticism of DMHP
1.1.5 Impact of the DMHP
1.1.6 DMHP Coverage
1.2 Complexities in Measuring Outcomes in Mental Health
1.3 National Mental Health Policy of India, 2014 and Community Mental Health Programme
1.4 Mental Healthcare Act 2017 and Community Mental Healthcare
1.4.1 Mental Illness and Capacity to Make Mental Healthcare and Treatment Decisions
1.4.2 Right of Persons with Mental Illness to Access Mental Healthcare and Community Living
1.5 Prevalence of Mental Illness in India and Treatment Gap
1.6 State Expenditure on District Mental Health Programme
1.7 Can Public Health Infrastructure and Human Resources in Health in India Support Mental Healthcare Provision?
1.7.1 Human Resource Gap in Mental Health
1.7.2 Dominance of Private Sector in Healthcare Utilisation
1.8 Scope and Methodology
References
2 How Janamanas Partners with Government and Women Self-help Groups to Embed Mental Health and Resilience in the Community
2.1 Civil Society as Community and Community Ecosystems for Mental Healthcare and Well-Being
2.2 Lack of Publicly Provided Comprehensive Mental Healthcare and Deprivations in the Community
2.3 Interpersonal Relationship Conflicts, Intimate Partner Violence, Patriarchal Norms and Substance Use Problems in the Community
2.4 Evidence on Intimate Partner Violence in West Bengal
2.5 Workshops with the Municipality to Overcome Resistance to the Programme
2.6 Knowledge Sharing with Community-Level Resources Like Self-help Groups
2.6.1 Audience Analysis
2.6.2 Training Programme for Community Cadre
2.7 Outreach Camps to Sensitise Community About Mental Health
2.8 Community Women-Led Mental Health Kiosks
2.9 Involvement of Community Stakeholders in Identifying Persons in Need of Mental Health Assistance
2.10 Counselling Services at the Mental Health Kiosk
2.11 Referral to Other Service Providers
2.12 Autonomy in Decision on Follow-up Care: Client-Centred Practice
2.13 Networking and Advocacy with Government, Other NGOs: Mental Healthcare Needs, Livelihood and Legal Service Providers
2.14 Internal Monitoring
2.15 Impact of Janamanas: Institutionalising the Community Mental Health Programme with the Municipality
2.15.1 Developing Community-Based Leadership
2.15.2 Deliver Mental Healthcare to Last Mile Communities
2.15.3 Mainstreaming Mental Healthcare in Urban Local Bodies
2.15.4 Concerns and Suggestions
2.16 Challenges of Funding, Staff Motivation and Community Awareness
2.17 Recommendation to Other Organisations Wishing to Start Community-Based Mental Health Services
Appendix
References
3 Integration of Mental Healthcare with General Healthcare Services for Tribals: The Decentralised Approach to Community Mental Health Programme by ASHWINI
3.1 Decentralised Mental Healthcare Services
3.2 Public Education and Medical Services for Tribals Comprise a Community Mental Health Programme
3.3 High Suicide Mortality Among Tribals and Community Perspectives on Mental Illness
3.4 Empowering the Community: Capacity Building of Tribals as Human Resources in Health
3.4.1 Training Programmes for Staff
3.4.2 Training Programmes for Village Health Guides
3.4.3 Training Programmes for ACCORD and Viswa Bharati Vidyodaya Trust Staff
3.4.4 Training and Capacity Building Needs
3.5 Incorporation of Mental Health into Health Education Programme and Acceptance of Plural Health Seeking Behaviour
3.6 How Are Persons with Mental Illness Identified in the Community?
3.7 Pharmacological Interventions Through Outpatient Clinics and Inpatient Services
3.8 Preventing Drop out Through Follow-up Services
3.9 Restoration of Routine Functioning
3.10 Impact of CMHP
3.10.1 Innovations
3.10.2 Awareness on Mental Illness: Improved Knowledge that Psychiatric Disorders Are an Illness, but Persistence of Belief in Faith Healing
3.10.3 Early Detection
3.10.4 Capacity Building for Staff
3.10.5 Follow-up Services
3.10.6 Inadequate Rehabilitation Options
3.11 Suggestions for the Programme
3.12 Challenge of Human Resource Shortage and Emerging Problems of Alcoholism
3.13 Future Goals for the CMHP
3.14 Recommendation to Other Organisations Wishing to Start Community-Based Mental Health Services
Appendix
References
4 Strategising Community Mental Health Service Provision for Underserved Areas and Resource-Poor Population: Satellite Clinics, and Care and Support Programme of Antara
4.1 Providing Locational Access to Mental Healthcare in Underserved Areas
4.2 Conceptualisation of Neighbourhood as Community and Use of Community Resources in Delivering Mental Health Services
4.3 Specialised Human Resource for the Community Programme
4.4 Care and Support Programme of Community Mental Health Unit
4.5 Dispelling Myths About Mental Illness Using Local Clubs, Schools and Local Self-government Institution Functionaries
4.6 Multi-stakeholder Identification and Referral
4.7 Comprehensive Mental Health Treatment and Rehabilitation for Care and Support Programme Clients and Usual Treatment for Clients Using OPD and IPD
4.7.1 Outpatient Department: Preference for Pharmacological Intervention in Rural Areas and Psychotherapy in Urban Areas
4.7.2 Satellite Clinics
4.7.3 Inpatient Services
4.8 Follow-up Services
4.8.1 Follow-up of Clients Under the Care and Support Programme
4.8.2 Follow-up of Clients Enrolled with OPD, Antara
4.9 Rehabilitation
4.9.1 Day Treatment Unit
4.10 Networking with Local Government, Local Clubs and Schools
4.11 Capacity Building of Specialist Human Resources
4.12 How Has Antara Fared?
4.12.1 Action Taken on Expert’s Recommendations
4.13 Recommendation to Other Organisations Wishing to Start Community-Based Mental Health Programmes
Appendix
References
5 Mental Health Service Provision and Enabling Agency Among Clients, Caregivers: The Case of Rural Mental Health Programme of The Banyan
5.1 Key Functionaries Perception of a Community Mental Health Programme: Well-Being of People, Comprehensive Services and Use of Local Resources
5.2 Household-Level Deprivation in Tamil Nadu
5.3 Disaster Relief Services and Needs Assessment: Community Demand for General Healthcare
5.4 Deployment of Local Human Resources as Community Health Workers
5.5 Information Dissemination on Mental Illness and Services
5.5.1 Mass Awareness Campaign with Participation of Local Self-government Institution Leaders to Launch Services
5.5.2 Mixed Strategies of Community Awareness Programmes
5.6 Changing Locus of Identification from the Organisation to the Community
5.7 Physical Infrastructure for Clinical Services: From a Temple to Health Centre
5.8 Treatment: Outpatient and Inpatient Facilities
5.8.1 Functioning of Psychiatric Outpatient Clinic
5.8.2 Functioning of Psychiatric Inpatient Services
5.8.3 Internal Monitoring
5.9 The Role of Continuity of Care in Reducing Treatment Drop Out
5.10 Capacity Building on Mental Illness and Intervention Protocols
5.11 Engaging with Stakeholders in the Community: Anganwadi, Local Self-government Institutions and Faith-Healing Institutions
5.12 Mobilising Client–Caregiver Support Group: Provision of Disability Allowance and Collective Action
5.13 The Challenges of Finding Livelihood Opportunities, Access to Government Entitlements and Childcare
5.14 Community Acceptance: Community Immersion, Recovery, Satisfaction with Services
5.15 Impact of RMHP: Perspectives of External Evaluators and Programme Functionaries
5.16 Organisational- and Community-Level Challenges
5.17 Expansion of Services and Partnering with Government: Way Ahead
Appendix
References
6 Altruism and Activating Neighbourhood Care for Persons with Mental Illness in the Community: Mental Health Programme of Mental Health Action Trust
6.1 Robust Associational Life as Enablers of Community-Based Programmes in Kerala
6.2 Community Mobilisation and Community Ownership: Guiding Principles of Pain and Palliative Care Society
6.3 Community-Driven Demand for Mental Healthcare from Palliative Care Volunteers
6.4 Interdependence of People as Community: Perspectives from Functionaries of MHAT
6.5 Volunteers as Backbone and Specialist Human Resource to Deliver Services at MHAT
6.6 What Are the Training Modalities of Volunteers and Staff?
6.7 Volunteer-Driven Identification, Screening and Referral
6.8 Treatment at Outpatient Clinics
6.8.1 Pharmacological Intervention
6.8.2 Tailored Psychosocial Interventions
6.9 Follow-up Care: The Critical Role of Volunteers
6.10 Restoring Functioning Through Day Care Centres Managed by Trained Volunteers
6.11 Social Care: Community Organised Provision of In-kind Transfers Like Foodgrains and Clothing
6.12 Participation of Palliative Care Clinics, Citizens and Government in the Mental Health Programme
6.13 Need to Expand Awareness in the Community by Volunteers
6.14 Monitoring Mechanisms and Impact of the Programme
6.15 Challenge of Human Resource Shortage and Sustaining the Intensity of Home Visits
6.16 Future Goals: Foray into Mental Health Education and Expansion of Services
6.17 Recommendation to Other Organisations Wishing to Start Community-Based Mental Health Services
Appendix
References
7 Lessons Learnt from NGO Approaches to Mental Healthcare Provision in the Community
7.1 Rolling Out Community Mental Health Services: Rationale and Local Priorities
7.2 Who Is the Community?
7.3 Capacity Building of Local Population as Community Health Workers
7.4 Dealing with Local Belief Systems
7.5 Activating Community Involvement
7.6 Intersectionality Between Vulnerability and Mental Illness: Is There a Pro-poor Bias in the NGO-Driven Mental Health Programmes?
7.7 Have the NGOs Achieved Their Aims?
7.8 Challenges, Accountability and the Way Ahead
References

Citation preview

Gayathri Balagopal Aruna Rose Mary Kapanee

Mental Health Care Services in Community Settings Discussions on NGO Approaches in India

Mental Health Care Services in Community Settings

Gayathri Balagopal Aruna Rose Mary Kapanee •

Mental Health Care Services in Community Settings Discussions on NGO Approaches in India

123

Gayathri Balagopal Independent Researcher Chennai, Tamil Nadu, India

Aruna Rose Mary Kapanee Department of Clinical Psychology National Institute of Mental Health and Neuro Sciences (NIMHANS) Bengaluru, Karnataka, India

ISBN 978-981-13-9100-2 ISBN 978-981-13-9101-9 https://doi.org/10.1007/978-981-13-9101-9

(eBook)

© Springer Nature Singapore Pte Ltd. 2019 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Singapore Pte Ltd. The registered company address is: 152 Beach Road, #21-01/04 Gateway East, Singapore 189721, Singapore

This book is the product of a documentation funded by the Navajbai Ratan Tata Trust and was implemented by Karuna Trust in collaboration with the Mental Health Initiative of the Navajbai Ratan Tata Trust and Sir Ratan Tata Trust.

Acknowledgements

We would like to acknowledge funding support from Navajbai Ratan Tata Trust, Mumbai, for this documentation. To Shinjini Chatterjee and Priya Vyas of Springer, we remain indebted for their constant support in completing this book. For the efficient production of the book, we acknowledge the efforts of Parimelazhagan Thirumani, Springer. We thank Ratnaboli Ray, Sudeshna, Radha, Sumita and Srija of Anjali; Dr. Shyla, Dr. Nandakumar and Dr. Mahantu of ASHWINI; PM John, Dr. Bijoy, Thomas John, Gargi, Prasenjit and Lallan of Antara; Prof. Vandana Gopikumar, Dr. Lakshmi Ravikanth, David Nash, Dr. Anbudorai, Dr. Vimala, Dr. KV Kishore Kumar, Anu and Salih of The Banyan; and Dr. Suresh, IPM, and Dr. Manoj, Sona, Deepa, Babina, Ismail, Gaffoor and Safiya and palliative care volunteers of Ambalavayal, Edacheri and Pulikkal clinics of MHAT. We are indebted to the Institutional Review Board for their feedback on the proposal and report. We appreciate the feedback on the documentation proposal by Dr. KS Jacob, CMC Vellore, and valuable comments on the report by Prof. M Vijayabaskar, Madras Institute of Development Studies. I thank my former team members in the Navajbai Ratan Tata Trust, particularly Vikram, Bhagirath, Aneka, Ashfaque, Mrinmoy and Mathew, for their inputs at various stages. Dr. Sudarshan and Dr. Kantharaju of Karuna Trust have been most supportive throughout this study. To Prof. D. Tripati Rao, IIM Lucknow, thanks for encouraging us in publication of this work. We are grateful to the clients and caregivers for patiently discussing their experience with mental health services, with us and with key stakeholders in the community who took time to interact with us. Finally, our heartfelt gratitude to the exemplary stars of the programmes—the kiosk operators of Janamanas, Anjali; community health workers of RMHP, The Banyan; health animators and village health guides of ASHWINI; CMHU coordinator, Antara; and community volunteers of MHAT who will inspire similar efforts throughout the country.

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Contents

1 Mental Healthcare Services in the Community: Where Does India Stand? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1 District as the Unit of Implementation: District Mental Health Programme . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1.1 How Is Community Mental Healthcare Conceptualised by the WHO and DMHP? . . . . . . . . . 1.1.2 Integration of Mental Healthcare with Primary Healthcare: Sakalawara and Raipur Rani Blueprint . . . 1.1.3 Implementation of District Mental Health Programme . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1.4 Criticism of DMHP . . . . . . . . . . . . . . . . . . . . . . . . . 1.1.5 Impact of the DMHP . . . . . . . . . . . . . . . . . . . . . . . . 1.1.6 DMHP Coverage . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.2 Complexities in Measuring Outcomes in Mental Health . . . . . 1.3 National Mental Health Policy of India, 2014 and Community Mental Health Programme . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.4 Mental Healthcare Act 2017 and Community Mental Healthcare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.4.1 Mental Illness and Capacity to Make Mental Healthcare and Treatment Decisions . . . . . . . . . . . . . 1.4.2 Right of Persons with Mental Illness to Access Mental Healthcare and Community Living . . . . . . . . . 1.5 Prevalence of Mental Illness in India and Treatment Gap . . . . 1.6 State Expenditure on District Mental Health Programme . . . . . 1.7 Can Public Health Infrastructure and Human Resources in Health in India Support Mental Healthcare Provision? . . . . 1.7.1 Human Resource Gap in Mental Health . . . . . . . . . . . 1.7.2 Dominance of Private Sector in Healthcare Utilisation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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1.8 Scope and Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 How Janamanas Partners with Government and Women Self-help Groups to Embed Mental Health and Resilience in the Community . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Civil Society as Community and Community Ecosystems for Mental Healthcare and Well-Being . . . . . . . . . . . . . . . . . . 2.2 Lack of Publicly Provided Comprehensive Mental Healthcare and Deprivations in the Community . . . . . . . . . . . . . . . . . . . . 2.3 Interpersonal Relationship Conflicts, Intimate Partner Violence, Patriarchal Norms and Substance Use Problems in the Community . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4 Evidence on Intimate Partner Violence in West Bengal . . . . . . 2.5 Workshops with the Municipality to Overcome Resistance to the Programme . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.6 Knowledge Sharing with Community-Level Resources Like Self-help Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.6.1 Audience Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . 2.6.2 Training Programme for Community Cadre . . . . . . . . 2.7 Outreach Camps to Sensitise Community About Mental Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.8 Community Women-Led Mental Health Kiosks . . . . . . . . . . . 2.9 Involvement of Community Stakeholders in Identifying Persons in Need of Mental Health Assistance . . . . . . . . . . . . . 2.10 Counselling Services at the Mental Health Kiosk . . . . . . . . . . 2.11 Referral to Other Service Providers . . . . . . . . . . . . . . . . . . . . 2.12 Autonomy in Decision on Follow-up Care: Client-Centred Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.13 Networking and Advocacy with Government, Other NGOs: Mental Healthcare Needs, Livelihood and Legal Service Providers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.14 Internal Monitoring . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.15 Impact of Janamanas: Institutionalising the Community Mental Health Programme with the Municipality . . . . . . . . . . 2.15.1 Developing Community-Based Leadership . . . . . . . . . 2.15.2 Deliver Mental Healthcare to Last Mile Communities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.15.3 Mainstreaming Mental Healthcare in Urban Local Bodies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.15.4 Concerns and Suggestions . . . . . . . . . . . . . . . . . . . .

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2.16 Challenges of Funding, Staff Motivation and Community Awareness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.17 Recommendation to Other Organisations Wishing to Start Community-Based Mental Health Services . . . . . . . . . . . . Appendix . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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3 Integration of Mental Healthcare with General Healthcare Services for Tribals: The Decentralised Approach to Community Mental Health Programme by ASHWINI . . . . . . . . . . . . . . . . . . . 3.1 Decentralised Mental Healthcare Services . . . . . . . . . . . . . . . . 3.2 Public Education and Medical Services for Tribals Comprise a Community Mental Health Programme . . . . . . . . . . . . . . . . 3.3 High Suicide Mortality Among Tribals and Community Perspectives on Mental Illness . . . . . . . . . . . . . . . . . . . . . . . . 3.4 Empowering the Community: Capacity Building of Tribals as Human Resources in Health . . . . . . . . . . . . . . . . . . . . . . . 3.4.1 Training Programmes for Staff . . . . . . . . . . . . . . . . . 3.4.2 Training Programmes for Village Health Guides . . . . 3.4.3 Training Programmes for ACCORD and Viswa Bharati Vidyodaya Trust Staff . . . . . . . . . . . . . . . . . . 3.4.4 Training and Capacity Building Needs . . . . . . . . . . . 3.5 Incorporation of Mental Health into Health Education Programme and Acceptance of Plural Health Seeking Behaviour . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.6 How Are Persons with Mental Illness Identified in the Community? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.7 Pharmacological Interventions Through Outpatient Clinics and Inpatient Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.8 Preventing Drop out Through Follow-up Services . . . . . . . . . . 3.9 Restoration of Routine Functioning . . . . . . . . . . . . . . . . . . . . 3.10 Impact of CMHP . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.10.1 Innovations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.10.2 Awareness on Mental Illness: Improved Knowledge that Psychiatric Disorders Are an Illness, but Persistence of Belief in Faith Healing . . . . . . . . . 3.10.3 Early Detection . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.10.4 Capacity Building for Staff . . . . . . . . . . . . . . . . . . . . 3.10.5 Follow-up Services . . . . . . . . . . . . . . . . . . . . . . . . . . 3.10.6 Inadequate Rehabilitation Options . . . . . . . . . . . . . . .

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3.11 Suggestions for the Programme . . . . . . . . . . . . . . . . . . 3.12 Challenge of Human Resource Shortage and Emerging Problems of Alcoholism . . . . . . . . . . . . . . . . . . . . . . . 3.13 Future Goals for the CMHP . . . . . . . . . . . . . . . . . . . . 3.14 Recommendation to Other Organisations Wishing to Start Community-Based Mental Health Services . . . . Appendix . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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4 Strategising Community Mental Health Service Provision for Underserved Areas and Resource-Poor Population: Satellite Clinics, and Care and Support Programme of Antara . 4.1 Providing Locational Access to Mental Healthcare in Underserved Areas . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Conceptualisation of Neighbourhood as Community and Use of Community Resources in Delivering Mental Health Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Specialised Human Resource for the Community Programme . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4 Care and Support Programme of Community Mental Health Unit . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.5 Dispelling Myths About Mental Illness Using Local Clubs, Schools and Local Self-government Institution Functionaries . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.6 Multi-stakeholder Identification and Referral . . . . . . . . . . . . 4.7 Comprehensive Mental Health Treatment and Rehabilitation for Care and Support Programme Clients and Usual Treatment for Clients Using OPD and IPD . . . . . . . . . . . . . . 4.7.1 Outpatient Department: Preference for Pharmacological Intervention in Rural Areas and Psychotherapy in Urban Areas . . . . . . . . . . . . . 4.7.2 Satellite Clinics . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.7.3 Inpatient Services . . . . . . . . . . . . . . . . . . . . . . . . . . 4.8 Follow-up Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.8.1 Follow-up of Clients Under the Care and Support Programme . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.8.2 Follow-up of Clients Enrolled with OPD, Antara . . . 4.9 Rehabilitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.9.1 Day Treatment Unit . . . . . . . . . . . . . . . . . . . . . . . . 4.10 Networking with Local Government, Local Clubs and Schools . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.11 Capacity Building of Specialist Human Resources . . . . . . . .

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4.12 How Has Antara Fared? . . . . . . . . . . . . . . . . . . . . . . . 4.12.1 Action Taken on Expert’s Recommendations . . 4.13 Recommendation to Other Organisations Wishing to Start Community-Based Mental Health Programmes . Appendix . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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5 Mental Health Service Provision and Enabling Agency Among Clients, Caregivers: The Case of Rural Mental Health Programme of The Banyan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Key Functionaries Perception of a Community Mental Health Programme: Well-Being of People, Comprehensive Services and Use of Local Resources . . . . . . . . . . . . . . . . . . 5.2 Household-Level Deprivation in Tamil Nadu . . . . . . . . . . . . 5.3 Disaster Relief Services and Needs Assessment: Community Demand for General Healthcare . . . . . . . . . . . . . . . . . . . . . . 5.4 Deployment of Local Human Resources as Community Health Workers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.5 Information Dissemination on Mental Illness and Services . . 5.5.1 Mass Awareness Campaign with Participation of Local Self-government Institution Leaders to Launch Services . . . . . . . . . . . . . . . . . . . . . . . . . 5.5.2 Mixed Strategies of Community Awareness Programmes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.6 Changing Locus of Identification from the Organisation to the Community . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.7 Physical Infrastructure for Clinical Services: From a Temple to Health Centre . . . . . . . . . . . . . . . . . . . . . . . . . 5.8 Treatment: Outpatient and Inpatient Facilities . . . . . . . . . . . . 5.8.1 Functioning of Psychiatric Outpatient Clinic . . . . . . 5.8.2 Functioning of Psychiatric Inpatient Services . . . . . . 5.8.3 Internal Monitoring . . . . . . . . . . . . . . . . . . . . . . . . 5.9 The Role of Continuity of Care in Reducing Treatment Drop Out . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.10 Capacity Building on Mental Illness and Intervention Protocols . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.11 Engaging with Stakeholders in the Community: Anganwadi, Local Self-government Institutions and Faith-Healing Institutions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.12 Mobilising Client–Caregiver Support Group: Provision of Disability Allowance and Collective Action . . . . . . . . . . . 5.13 The Challenges of Finding Livelihood Opportunities, Access to Government Entitlements and Childcare . . . . . . . .

. . . 121

. . . 122 . . . 123 . . . 125 . . . 126 . . . 127

. . . 127 . . . 128 . . . 132 . . . . .

. . . . .

. . . . .

134 135 136 139 140

. . . 140 . . . 144

. . . 145 . . . 147 . . . 150

xiv

Contents

5.14 Community Acceptance: Community Immersion, Recovery, Satisfaction with Services . . . . . . . . . . . . . . . . . . . . . . . . . 5.15 Impact of RMHP: Perspectives of External Evaluators and Programme Functionaries . . . . . . . . . . . . . . . . . . . . . . 5.16 Organisational- and Community-Level Challenges . . . . . . . 5.17 Expansion of Services and Partnering with Government: Way Ahead . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Appendix . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

. . . . 151 . . . . 153 . . . . 154 . . . . 156 . . . . 156 . . . . 159

6 Altruism and Activating Neighbourhood Care for Persons with Mental Illness in the Community: Mental Health Programme of Mental Health Action Trust . . . . . . . . . . . . . . . . 6.1 Robust Associational Life as Enablers of Community-Based Programmes in Kerala . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.2 Community Mobilisation and Community Ownership: Guiding Principles of Pain and Palliative Care Society . . . . . 6.3 Community-Driven Demand for Mental Healthcare from Palliative Care Volunteers . . . . . . . . . . . . . . . . . . . . . . 6.4 Interdependence of People as Community: Perspectives from Functionaries of MHAT . . . . . . . . . . . . . . . . . . . . . . . 6.5 Volunteers as Backbone and Specialist Human Resource to Deliver Services at MHAT . . . . . . . . . . . . . . . . . . . . . . . 6.6 What Are the Training Modalities of Volunteers and Staff? . . 6.7 Volunteer-Driven Identification, Screening and Referral . . . . 6.8 Treatment at Outpatient Clinics . . . . . . . . . . . . . . . . . . . . . . 6.8.1 Pharmacological Intervention . . . . . . . . . . . . . . . . . 6.8.2 Tailored Psychosocial Interventions . . . . . . . . . . . . . 6.9 Follow-up Care: The Critical Role of Volunteers . . . . . . . . . 6.10 Restoring Functioning Through Day Care Centres Managed by Trained Volunteers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.11 Social Care: Community Organised Provision of In-kind Transfers Like Foodgrains and Clothing . . . . . . . . . . . . . . . . 6.12 Participation of Palliative Care Clinics, Citizens and Government in the Mental Health Programme . . . . . . . . 6.13 Need to Expand Awareness in the Community by Volunteers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.14 Monitoring Mechanisms and Impact of the Programme . . . . . 6.15 Challenge of Human Resource Shortage and Sustaining the Intensity of Home Visits . . . . . . . . . . . . . . . . . . . . . . . . 6.16 Future Goals: Foray into Mental Health Education and Expansion of Services . . . . . . . . . . . . . . . . . . . . . . . . .

. . . 161 . . . 162 . . . 164 . . . 165 . . . 168 . . . . . . .

. . . . . . .

. . . . . . .

169 169 170 171 171 173 175

. . . 177 . . . 178 . . . 179 . . . 179 . . . 180 . . . 180 . . . 181

Contents

xv

6.17 Recommendation to Other Organisations Wishing to Start Community-Based Mental Health Services . . . . . . . . . . . 181 Appendix . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 181 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 184 7 Lessons Learnt from NGO Approaches to Mental Healthcare Provision in the Community . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.1 Rolling Out Community Mental Health Services: Rationale and Local Priorities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.2 Who Is the Community? . . . . . . . . . . . . . . . . . . . . . . . . . . 7.3 Capacity Building of Local Population as Community Health Workers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.4 Dealing with Local Belief Systems . . . . . . . . . . . . . . . . . . 7.5 Activating Community Involvement . . . . . . . . . . . . . . . . . . 7.6 Intersectionality Between Vulnerability and Mental Illness: Is There a Pro-poor Bias in the NGO-Driven Mental Health Programmes? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.7 Have the NGOs Achieved Their Aims? . . . . . . . . . . . . . . . 7.8 Challenges, Accountability and the Way Ahead . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

. . . . 185 . . . . 186 . . . . 191 . . . . 192 . . . . 194 . . . . 195

. . . .

. . . .

. . . .

. . . .

198 199 200 204

About the Authors

Gayathri Balagopal is an independent researcher based in Chennai whose work experience has been in the development sector as consultant with The Banyan Academy of Leadership in Mental Health, Health Portfolio of Navajbai Ratan Tata Trust and Madras Institute of Development Studies. She is co-editor of the book, Elderly Care in India: Societal and State Responses (2017) with Professor S. Irudaya Rajan. Her research has focussed attention on health and social care among the elderly, rehabilitation of homeless women with mental health issues, employment problems confronting persons with mental health issues, community mental health programmes and social protection in India. Her research interests are in public health, mental health, gerontology and social protection. Aruna Rose Mary Kapanee is Associate Professor of Clinical Psychology, National Institute of Mental Health and Neuro Sciences (NIMHANS). She has worked at St. John’s Research Institute, Bengaluru and Karuna Trust, Bengaluru earlier. Her research has been published in leading peer-reviewed journals. She was one of the collaborators of the National Mental Health Survey of India 2015-16, which was published by NIMHANS. She has researched individual and family factors associated with psychological distress and well-being in young adults, rehabilitation and recovery in persons with mental illness, and community mental health programmes in India. Her research interests are in public mental health, creative and expressive arts in mental health, mental health rehabilitation and recovery, peace and conflict resolution.

xvii

List of Figures

Fig. 1.1 Fig. 1.2 Fig. 1.3 Fig. 2.1 Fig. 2.2

Fig. 2.3

Fig. Fig. Fig. Fig.

2.4 2.5 2.6 2.7

Fig. 2.8

Fig. 3.1 Fig. 3.2 Fig. 4.1 Fig. 4.2

DMHP coverage of districts and population in National Mental Health Survey states in 2015–16 (as %) . . . . . . . . . . . . . . . . . . Prevalence of psychiatric disorders (current) across 12 states, 2015–16 (as %) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Mental health specialist human resources in National Mental Health Survey States (per lakh population), 2015–16 . . . . . . . . Proportion of households that are located in slums in urban areas of West Bengal, districtwise, 2011 (as %) . . . . . . . . . . . . Percentage distribution of women age 15–49 who have ever experienced physical or sexual violence by whether they have ever sought help, West Bengal, 2015–16 . . . . . . . . . . . . . . . . . Percentage of women age 15–49 among those who have sought help from any source, the source from which help was sought for physical and sexual violence, West Bengal, 2015–16. Note Women can report more than one source from which they sought help . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . SHG members at training programme—Janamanas . . . . . . . . . Outreach camp of Janamanas . . . . . . . . . . . . . . . . . . . . . . . . . . Kiosk operators at Janamanas Kiosk . . . . . . . . . . . . . . . . . . . . . Percentage distribution of persons with mental health issues registered with Janamanas by source of referral to kiosk, 2010–12 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Percentage distribution of persons with mental health issues registered with Janamanas by reason for utilising kiosks, 2010–12 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Percentage distribution of ASHWINI CMHP OP clients by year of enrollment, 2005–12 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Percentage distribution of ASHWINI CMHP clients by follow-up status across gender, 2012 . . . . . . . . . . . . . . . . . . . . Community awareness programme organized by Antara . . . . . . School mental health programme organised by Antara . . . . . . .

..

13

..

20

..

28

..

43

..

50

. . . .

. . . .

51 53 55 58

..

60

..

63

..

83

.. 84 . . 102 . . 103 xix

xx

Fig. 4.3 Fig. 4.4 Fig. 5.1 Fig. 5.2 Fig. 5.3 Fig. 5.4 Fig. 5.5 Fig. 5.6 Fig. 5.7

Fig. 5.8

Fig. 5.9 Fig. 6.1 Fig. 6.2

List of Figures

Total caseload and number of new clients utilising the main OPD at Antara, 2009–12 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Total caseload and the number of new clients utilising satellite clinics, 2009–12 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Street theatre to spread mental health awareness on the beach at Kovalam . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Display of information education campaign flex board near Kovalam Dargah . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The site of the first health clinic of RMHP . . . . . . . . . . . . . . . . Percentage distribution of clients by year of enrollment at RMHP OP clinic, 2005–12 . . . . . . . . . . . . . . . . . . . . . . . . . . . . Proportion of clients enrolled from Thiruporur Block in each year in RMHP OP, 2005–12 (as %) . . . . . . . . . . . . . . . . . . . . . Community health workers conducting home visit––RMHP . . . Follow-up status of clients utilising RMHP outpatient clinic by gender, 2012 (as %). Note Drop out refers to those who have dropped out of RMHP OP services . . . . . . . . . . . . . . . . . . . . . Percentage distribution of dropped out RMHP OP clients by year of enrollment. Note Information on year of enrollment is not recorded for 56 clients . . . . . . . . . . . . . . . . . . . . . . . . . . . . Client–caregiver support group meeting at RMHP . . . . . . . . . . Mental health team providing home-based treatment––MHAT . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Volunteers at MHAT pharmacy . . . . . . . . . . . . . . . . . . . . . . . .

. . 105 . . 108 . . 129 . . 130 . . 135 . . 138 . . 139 . . 141

. . 143

. . 143 . . 149 . . 172 . . 173

List of Tables

Table 1.1 Table 1.2 Table 1.3

Table 1.4 Table 1.5

Table 1.6

Table 1.7 Table 1.8 Table 2.1 Table 2.2

Table 2.3

Suicide mortality rate for the general population by gender in India, statewise, 2015 . . . . . . . . . . . . . . . . . . . . . . . . . . . . Share of approved and available budget spent by states on District Mental Health Programme, 2016–17 (as %) . . . . . Primary health infrastructure and human resources in health in rural areas of India, statewise, 2017 (as absolute numbers) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Percentage of outpatient treatment from public health facilities in select states, India, 1995–96 to 2014 . . . . . . . . . . Percentage of outpatient and hospitalised treatment by source of treatment for psychiatric disorders in India, statewise, 2014 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Average total medical expenditure for outpatient treatment (Rs.) per ailing person for psychiatric disorders, average total medical expenditure (Rs.) for treatment per hospitalisation case for psychiatric disorders during the stay at hospital (as inpatient) over last 365 days in India, statewise, 2014 (Rs.) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Details of interviews conducted at the five NGO-run CMHPs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Socio-demographic indicators in Tamil Nadu, Kerala and West Bengal . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Percentage of households with deprivation criteria in rural areas of West Bengal, districtwise, 2011 . . . . . . . . . . Percentage of ever-married women age 15–49 who have ever experienced emotional, physical, or sexual violence committed by their husband, according to background characteristics of wife and husband, West Bengal, 2015–16 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Types of injuries reported by women due to different types of spousal violence, West Bengal, 2015–16 (as %) . . . . . . . .

..

21

..

24

..

26

..

29

..

31

..

32

..

34

..

35

..

44

..

48

..

49 xxi

xxii

Table Table Table Table

List of Tables

2.4 2.5 2.6 2.7

Table 2.8 Table 3.1

Table 3.2 Table 3.3 Table 4.1 Table 4.2 Table 4.3 Table 5.1 Table 5.2 Table 5.3 Table 5.4 Table 5.5 Table 5.6 Table 6.1 Table 6.2 Table 6.3 Table 6.4 Table 7.1

Curriculum for Janamanas training programme, 2012 . . . . . . Community awareness activities of Janamanas, 2010–12 . . . . Human resource structure of Janamanas in 2012 . . . . . . . . . . Percentage distribution of persons with mental health issues registered with Janamanas by socio-demographic characteristics, 2010–12 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Components of Janamanas . . . . . . . . . . . . . . . . . . . . . . . . . . . Percentage distribution of clients of CMHP, ASHWINI by socio-demographic characteristics and diagnosis, 2005–2012 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Percentage distribution of clients of CMHP, ASHWINI by reason for drop out from treatment, 2005–12 . . . . . . . . . . Components of CMHP, ASHWINI . . . . . . . . . . . . . . . . . . . . Percentage of households with deprivation criteria in rural areas of South 24 Parganas district, West Bengal, 2011 . . . . Socio-demographic characteristics and diagnosis of Care and Support Programme clients of Antara, 2012–13 . . . . . . . Components of CMHP, Antara . . . . . . . . . . . . . . . . . . . . . . . Percentage of households with deprivation criteria in rural areas of Tamil Nadu, district wise, 2011 . . . . . . . . . . Human resource structure in RMHP, 2012. . . . . . . . . . . . . . . Percentage distribution of RMHP psychiatric outpatient clinic clients by mode of referral to RMHP, 2005–2012 . . . . Socio-demographic information of clients of RMHP, The Banyan, 2005–2012 . . . . . . . . . . . . . . . . . . . . . . . . . . . . Percentage distribution of psychiatric outpatient clinic clients of RMHP by reason for drop out, 2005–12 . . . . . . . . Components of rural mental health programme, The Banyan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Percentage of households with deprivation criteria in rural areas of Kerala, district wise, 2011 . . . . . . . . . . . . . . Human resource structure of MHAT . . . . . . . . . . . . . . . . . . . Percentage distribution of MHAT clients by socio-demographic characteristics and diagnosis, 2008–12 . . . Components of MHAT’s CMHP . . . . . . . . . . . . . . . . . . . . . . Community involvement in community mental health programme . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

.. .. ..

54 57 57

.. ..

62 68

..

82

.. ..

85 91

..

97

. . 106 . . 118 . . 124 . . 127 . . 133 . . 137 . . 144 . . 157 . . 167 . . 169 . . 174 . . 182 . . 187

Chapter 1

Mental Healthcare Services in the Community: Where Does India Stand?

Abstract India has witnessed the emergence of a National Mental Health Policy 2014 and enactment of the Mental Healthcare Act 2017 in this decade. Both the policy and legislation recognise the right of people to access mental healthcare as well as social care, with emphasis on services in the community, thus enshrining their right to live in the community. Despite the recent policy attention to mental health, formulating and implementing mental health care in the community is a challenge in India in the context of insufficient budgetary outlays, human resource shortages and differing levels of social and economic development across states. Keywords Community mental health · District Mental Health Programme · Prevalence, treatment gap, human resources India has witnessed the emergence of a National Mental Health Policy 2014 and enactment of the Mental Healthcare Act 2017 in this decade. Both the policy and legislation recognise the right of people to access mental healthcare as well as social care, with emphasis on services in the community, thus enshrining their right to live in the community. This approach marks a shift from the earlier legislation, enacted three decades ago, which focused attention on aspects related to institutional care of persons with mental illness. The World Health Organisation (WHO) emphasised the need to address the treatment gap of 75% for mental, neurological and substance use disorders in low- and middle-income countries (LMIC) like India, which are characterised by high burden and scarce resources by integrating mental health with primary healthcare services and developing a range of services within local settings (World Health Organisation 2008a, b). Recent data from the Mental Health Atlas 2017 highlights the continued neglect in availability of community mental healthcare facilities in LMIC. The median availability of community-based mental healthcare facilities was 0.48 per 100,000 population in LMIC when compared to 1.82 per 100,000 population in high-income countries (World Health Organisation 2018a). The situation in India is grim, as there were only 1217 community-based/nonhospital mental health facilities, 952 outpatient facilities attached to a hospital, 240 day treatment facilities, 139 outpatient facilities for children/adolescents and day care services for children/adolescents in the entire country (World Health Organisation 2018b). Human resource shortages still plague mental health systems in these © Springer Nature Singapore Pte Ltd. 2019 G. Balagopal and A. R. M. Kapanee, Mental Health Care Services in Community Settings, https://doi.org/10.1007/978-981-13-9101-9_1

1

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1 Mental Healthcare Services in the Community …

countries. The median number of mental health workers stood at 6.2 per 100,000 population (including psychiatrists, child psychiatrists, other medical doctors, nurses, psychologists, social workers, occupational therapists and other paid workers working in mental health) in LMIC when compared to 71.7 per 100,000 population in high-income countries (World Health Organisation 2018a). Despite the recent policy attention to mental health, formulating and implementing mental healthcare in the community is a challenge in India in the context of insufficient budgetary outlays, human resource shortages and differing levels of social and economic development across states. With uneven development of public health infrastructure in the country, access to mental healthcare was confined to states with adequate human resources in health and for those who could afford to pay for treatment. This chapter discusses these issues to contextualise approaches to community mental healthcare. The inadequacy of mental healthcare services in the community coupled with traditional beliefs resulted in utilisation of faith-based systems of mental health treatment or no treatment at all. Despite these challenges, non-governmental organisations (NGOs) have initiated community mental healthcare services to address underprovisioning of mental healthcare by the government. The book casts the spotlight on envisioning of community mental health in policy and law, implementation by the government, how it is practised by select NGOs and the challenges involved in programme implementation. In doing so, the book attempts to answer the trigger factors that led to the NGOs embarking on Community Mental Health Programme (CMHPs)—how needs of the community were understood, the funding mechanisms, how the human resource gap was addressed, type of coalitions formed in the community, shaping of interventions, accountability mechanisms, achievements and limitations of the programmes.

1.1 District as the Unit of Implementation: District Mental Health Programme 1.1.1 How Is Community Mental Healthcare Conceptualised by the WHO and DMHP? Before we examine how WHO and District Mental Health Programme (DMHP) imagine a CMHP, an understanding of community-based development is in order. Any government or organisation, which intends to start programmes be it mental health or child health or female education in a community needs to understand the population composition, social connectedness among people in a locality, relationship among people with institutions and local political economy. If we examine the notion of community through the lens of a spatial settlement of a village, it is clear that it was viewed differently by stalwarts like Gandhi, Nehru and Ambedkar. The village was a site of authenticity for Gandhi, a source of India’s backwardness for Nehru and a site of brutal oppression for Ambedkar (Jodhka 2001). These divergent views signify

1.1 District as the Unit of Implementation: District Mental Health Programme

3

a community puzzle—community has a two-faced image of being a cure to address social problems and is at the same time a site of social problems (Cochrane and Newman 2009). It is this ‘puzzle’ that makes the notion of community-based programmes complex, particularly in the Indian context where the population is heterogeneous and socially stratified, with considerable inter-state variation. So, any intervention with communities needs to factor in the social unconnectedness in several parts of India. Social norms and customs will govern how social groups interact with each other, which are not static and alter with social transformation. But policy perceives community as people residing in a geographical locality or demographic groups or socio-religious identities (Communities and Local Government 2006). With community development being a policy buzzword, governments encourage this notion in the implementation of various programmes. Why do governments adopt the community development approach? Human societies are characterised by community-like organisations, as humans share a willingness to connect and cooperate (Gilchrist 2004). Drawing on this aspect of human nature, in the development arena, the community development approach became quite influential in the 1950s, when funding agencies like USAID and Ford Foundation began to pump money into community development projects in developing countries, including India (Mansuri and Rao 2013). The community development approach is supposed to be a contrast to the topdown government programmes. Two major methods of inducing participation by governments are through community development and decentralisation of resources and authority to local governments. ‘Community-based development is an umbrella term for projects that actively include beneficiaries in their design and management, while community-driven development refers to community-based development projects in which communities have direct control over key project decisions, including management of investment funds’ (Mansuri and Rao 2004: 2). Projects that are referred to as community development projects usually attempt to encourage community engagement in service delivery and decentralisation involves initiatives to strengthen village and municipal governments from demand and supply side (Mansuri and Rao 2013). Citizen participation according to Mansuri and Rao (2013), includes the following: • Participation in decision making through consultative processes or deliberative bodies without the authority to make or veto resource allocation decisions • Contribution of cash, material goods, or physical labour to construct public goods or provide public services • Monitoring and sanctioning of public and private service providers • Provision of information and involvement in awareness-raising activities • Formation of neighbourhood committees (for instance, to reduce crime or resolve local conflicts) • Selection or election of local representatives

4

1 Mental Healthcare Services in the Community …

In fact, funding for community development witnessed a decline in the 1960s, as they were seen to have failed and the new approach veered towards top-down technical solutions (Mansuri and Rao 2013). By the 1980s, the tide had turned with top-down development approach also resulting in failures. The World Bank and USAID then began to push for what had become the current policy rage in the 1980s and 1990s—participatory development and decentralisation, which had later morphed into social capital (Mansuri and Rao 2013). Categories such as ‘community’, ‘indigenous’, ‘local knowledge’, ‘people’s planning’, which were intended to challenge top-down technocratic approaches, were in fact conduits to transmit governmental strategies (Mosse 2005). And this is what characterises many of India’s development programmes, which are labelled as community-based. The WHO conceptualisation of CMHP is more about service delivery for a geographical community. Primarily WHO outlines a mental healthcare service package that comprises treatment, psychosocial rehabilitation, public education and people’s well-being, which are to be delivered in local settings. The word community appears to denote services delivered in a geographical setting. Notions of people’s participation in the programme are not given adequate importance. However, this is the view that has more or less been adopted by the government in the design of the DMHP. Further, the concept and role of community itself is not interrogated or examined, which is important in a country like India, which has a heterogeneous population; with considerable inter-state and intra-state variations. The World Health Report on Mental Illness (World Health Organisation 2001: 50) defines community care as being ‘about the empowerment of people with mental and behavioural disorders. In practice, community care implies the development of a wide range of services within local settings. This process, which has not yet begun in many regions and countries, aims to ensure that some of the protective functions of the asylum are fully provided in the community, and the negative aspects of the institutions are not perpetuated. Care in the community, as an approach, means: • Services which are close to home, including general hospital care for acute admissions, and long-term residential facilities in the community. • Interventions related to disabilities as well as symptoms. • Treatment and care specific to the diagnosis and needs of each individual. • A wide range of services which address the needs of people with mental and behavioural disorders. • Services which are coordinated between mental health professionals and community agencies. • Ambulatory rather than static services, including those which can offer home treatment. • Partnership with carers and meeting their needs. • Legislation to support the above aspects of care’. Later definitions of the WHO appear to include aspects like well-being, psychosocial and rehabilitation services implying a shift to more comprehensive service provision with the use of local resources in a locality. Yet, this approach also emphasises service provision without the involvement of the community in the design of the programme.

1.1 District as the Unit of Implementation: District Mental Health Programme

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According to the World Health Organisation (2007: 2), ‘community mental health care programmes imply that all mental health and well-being needs of the community are met in the community, using community resources and the primary health care system. It goes much beyond only treatment and includes: • • • • • •

Promotion of well being. Stigma removal. Psychosocial support… Rehabilitation of those in need… Prevention of harm from alcohol and substance abuse. Treatment of the ill using the primary health care system (focusing specifically on the most common and disabling illness in the community)’.

Definitions by Basic Needs do make efforts to highlight capability building and community participation in programme design. Basic Needs (2009: 10) defines community mental health practice as a ‘multi intervention process that effectively meets a community’s needs for appropriate mental health services through both engaging available local, tertiary and national resources and capabilities and stimulating multiple stakeholder awareness and commitment’. The basic principles of community mental health practice are treating community as a resource, enabling all levels of health professionals and a mental health for all system (Basic Needs 2009). Thornicroft et al. (2010: 68) note that the definition of community-based mental health care varies among countries and suggest that for LMICs, the model should have: • • • • • • • • • • •

‘A focus on population and public health needs. Case finding and detection in the community. Locally accessible services (i.e. accessible in less than half a day). Community participation and decision-making in the planning and provision of mental healthcare systems. Self-help and service user empowerment for individuals and families. Mutual assistance and/or peer support of service users. Initial treatment by primary care and/or community staff. Stepped care options for referral to specialist staff and/or hospital beds if necessary. Backup supervision and support from specialist mental health services. Interfaces with NGOs (in relation to rehabilitation). Networks at each level, including between different services, the community and traditional and/or religious healers’.

1.1.2 Integration of Mental Healthcare with Primary Healthcare: Sakalawara and Raipur Rani Blueprint In order to address inadequate availability of mental health services in LMIC, the WHO proposed that mental health service components in those countries should be

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integrated with primary healthcare, with provision for referral to specialists (Thornicroft and Tansella 2003). Primary healthcare facilities are the first line of treatment for mental healthcare and comprise early identification of mental disorders, treatment of common mental disorders, management of stable psychiatric clients, referral to other levels where required, attention to the mental health needs of people with physical health problems, and mental health promotion and prevention (World Health Organisation 2008b). Epidemiological surveys carried out in India showed that there was a large number of people with mental and neurological disorders who needed treatment, although there was a shortage of trained human resources to handle mental healthcare (National Institute of Mental Health and Neuro Sciences 1986). For instance, in 1975, there were only 1000 mental health professionals to deal with nearly seven million persons with mental illness and epilepsy in India (National Institute of Mental Health and Neuro Sciences 1986). As mental illness and epilepsy were treatable with early identification, psychopharmacological and social interventions, the government recognised the importance of developing costeffective models of mental healthcare. An expert committee of the WHO suggested that developing countries implement a few pilot programmes of mental healthcare provision and training programmes through existing healthcare systems for rural or urban populations (National Institute of Mental Health and Neuro Sciences 1986). In 1976, the government inaugurated a Community Mental Health Unit (CMHU) of National Institute of Mental Health and Neuro Sciences (NIMHANS) at a village called Sakalawara, a rural area in Karnataka, in which a programme for detection and management of priority mental and neurological disorders like psychosis and epilepsy in a rural catchment by training general health practitioners was initiated by integrating mental health into primary health centres (Chandrasekhar et al. 1981). Psychosis and epilepsy were selected as priority disorders, as both were easily identified, cause significant distress and social dysfunction and were responsive to treatment (National Institute of Mental Health and Neuro Sciences 1986). The decision to locate the CMHU in a rural area was taken, as the urban and institutionalised atmosphere at NIMHANS was not ideal for training general health professionals to identify and treat mental illness in primary care settings (National Institute of Mental Health and Neuro Sciences 1986). The unit started on a campus owned by an NGO, Arogya Foundation of the Mahabodhi Society. The details of the programme clearly show that the Sakalawara prototype is what is followed in the DMHP and could possibly be a blueprint adopted by NGOs working in mental health. Intensive training programmes comprising 15 weekly sessions of 2 h each were conducted by a psychiatrist for the doctors and by a psychiatrist and psychiatric social worker for multipurpose workers (MPWs) using a manual (Isaac et al. 1982). Doctors were trained to diagnose and manage typical cases of psychosis, epilepsy and intellectual disability, refer complicated cases to district hospitals, supervise MPWs in follow-up of detected cases. MPWs were trained to detect all cases of severe mental illness and intellectual disability, refer to PHC, follow-up, psycho educate and handle emergencies. Initially, mental health service delivery began in Sakalawara with a triweekly primary healthcare clinic, which progressed to a daily clinic. The clinic also had components of identification and follow-up of psychosis and epilepsy

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in the community, which provided insight into presentation of these illnesses in rural areas, knowledge and attitude of community towards mental illness and response of community to awareness campaigns. In the process of identifying people in need of treatment through interviews with key informants, the CMHU staff understood that local people prioritised general health over mental health, which meant that mental healthcare could not be segregated from primary healthcare in rural areas (National Institute of Mental Health and Neuro Sciences 1986). The programme involved community members like village head, school teachers, temple priests and local level leaders in case detection, management of persons with mental illness in the family environment and conducting mental health awareness campaigns after orienting them about mental illness. This was considered as a form of community participation, wherein residents of a village got involved in activities in the community to increase awareness about mental illness and encourage them to seek treatment. Further, they also realised that the ideal way to impart mental health awareness was to convey a positive image of recovery by taking the help of clients who had recovered and their family members to talk to small groups in the village by focusing on dispelling myths about mental illness being caused by evil spirits, importance of regular treatment for recovery, kindness rather than physical punishment helped clients and work played a key role in the recovery process. The field experience in Sakalawara helped NIMHANS in developing training courses and modules for PHC doctors and MPWs. After every training, participants were assessed on improvement in their knowledge and diagnostic skills. Similarly, a rural mental healthcare model, known as Raipur Rani project was initiated by Post Graduate Institute of Medical Education and Research (PGIMER), Chandigarh in collaboration with WHO in 1975 (Wig et al. 1981). The project used the existing primary healthcare infrastructure to train personnel to identify and treat patients with mental illness in Raipur Rani block in Ambala district, Haryana. This model was primarily a research-oriented programme, which was to serve as a blueprint for upscaling across India. The research team first interviewed health staff at the PHCs on their existing workload, knowledge on mental illness and drugs used to treat mental illness, and identification of persons with mental illness in their clinic. They found that most of the personnel had a poor understanding of mental illness and treatment. Next, patients attending PHC clinics were screened for mental illness by the research team and PHC staff. While the research team found that 17.7% of patients had a mental illness, PHC staff identified only 4.4% as having a mental illness, indicating the need for staff training. The team also organised key informant interviews to understand community attitudes and found that people prioritised disorders such as acute psychosis, mania and schizophrenia as the most serious. This finding helped in priority setting for the project. The project resulted in the development of training manuals and modules and also became a training centre for integration of mental healthcare with primary health system. Following the success of Sakalawara, Raipur Rani and similar pilots in various parts of the country, in 1982 the government launched the National Mental Health Programme (NMHP) to increase access to mental healthcare. As the district was the unit of planning and implementing most government health programmes, the NMHP

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recognised that the mental healthcare programme needed to be operationalised in at least one district of every state within 5 years. The first district that was selected to pilot the District Mental Health Programme was Bellary in Karnataka. Bellary district was selected, as several mental health camps were already implemented through PHCs and health personnel had already had some training. The programme in Bellary was inaugurated in 1985. The Bellary model followed the Sakalawara and Raipur Rani blueprint, with training of general health professionals in PHCs to identify and treat priority mental and neurological illnesses alongside encouraging people to involve in spreading awareness about mental illness and ensure that they understand the importance of follow-up care. Based on the results from the Bellary programme, India launched the DMHP a decade later.

1.1.3 Implementation of District Mental Health Programme In 1996, India implemented the WHO model of integrated mental health care with primary healthcare services through the District Mental Health Programme (DMHP). Against the backdrop of scarcity of specialist resources in mental health, training of health personnel in the Primary Health Centres (PHCs) to deliver mental healthcare at the community level formed the fulcrum of this programme. However, it is unclear how successful the PHC-driven model can be, given that public health infrastructure is inadequate and poorly staffed in many regions of the country. District Mental Health Programme covers 339 out of 640 districts in India (Lahariya 2018) and envisages provision of basic mental healthcare services at the community level with the following components: • Service provision: provision of mental health outpatient and inpatient mental health services with a 10-bedded inpatient facility. • Outreach component: satellite clinics at CHCs/PHCs by DMHP team, targeted interventions, life skills education and counselling in schools, college counselling services, workplace stress management and suicide prevention services. • Sensitization and training of health personnel at the district and sub-district levels. • Awareness camps for dissemination of awareness regarding mental illnesses and related stigma through the involvement of local Panchayati Raj institutions, faith healers, teachers, leaders, etc. • Community participation through linkages with self-help groups, family and caregiver groups and NGOs working in the field of mental health.

1.1.4 Criticism of DMHP Dissociation from Community District Mental Health Programme has been criticised for being dissociated from the community, which it was intended to serve

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(Jain and Jadhav 2008). Jain and Jadhav (2008) have identified major influences that shaped community psychiatry in India, namely, cultural asymmetry between health professionals and the wider society; and WHO policies that have provided direction of these services. While health professionals defined community through the perspective of ‘cases’ and as a site of disease pathology, the day-to-day life of villages in India revolves around various factors such as caste, kinship, religion and norms. The healing of villagers often takes place in faith-based centres, which help them deal with psychological and social disturbances. These lived realities were ignored or sidelined by health professionals (Jain and Jadhav 2008). The programme failed to engage with communities’ experiences, as the community was conceptualised as a catchment for case finding and diagnostic categories, with the health centre assuming the role of a community and the population being labelled as having poor awareness about mental illness. WHO emphasised integration of mental health with primary health services notwithstanding the fact that community was conceptualised differently by policymakers and the community and this model was taken as a blueprint and photocopied throughout the country (Jain and Jadhav 2008). Poor Primary Healthcare Infrastructure National mental health programmes in most LMICs remain on paper, are dysfunctional and WHO policy of integration of mental health with primary care is based on flawed assumptions of a robust primary healthcare system, whereas in reality the primary health infrastructure is overburdened with a scarcity of health professionals and have to contend with a high burden of infectious diseases, has limited funding, inappropriate training and displays professional apathy (Jacob 2011). Besides, the training to deal with mental health conditions in general health settings has been inadequate, with a focus on tertiary care or specialist focus (Jacob 2011). Moreover, there is a concentration of mental health professionals in urban areas, which adversely affects the delivery of mental health care in rural areas (Jacob 2011). Added to these factors is the poor financial allocation, which ensures that mental health programmes in LMICs remain only on paper (Jacob 2011). Inadequate Political and Fiscal Support The success of pilot mental health programmes has not been replicated on a national level, as ingredients like political and administrative leadership, fiscal support and monitoring mechanisms, which contributed to the success of pilots, were found to be absent when upscaled (Jacob 2011). Top-down Approach The top-down approach, poor functioning of PHCs in general, staff apathy and lack of monitoring mechanisms resulted in insufficient progress of the NMHP (Kapur 2004). He describes three main inspirations for the community mental health movement in India (Kapur 2004). Firstly, western countries had recognised that mental hospitals as the locus of treatment had proven to be counterproductive. Secondly, institution-based psychiatry was dependent on finance and trained human resources, both of which were in short supply in India. Thirdly, examples from other LMICs had shown that adequately trained paraprofessionals were able to deliver reasonable mental healthcare in community settings. India went ahead and launched

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the NMHP and the DMHP. However, even the much publicised Bellary model was not without problems (Kapur 2004). In a conference in 1990, the programme officer in charge of the Bellary model described the problems in diagnosing psychiatric disorders correctly, prescribing the right medication and correct dosage and management of side effects of medication (Kapur 2004). Despite this, the Bellary model was upscaled in the country as the DMHP. Shortage of Trained Mental Health Professional in DMHP and Growing Private Sector with Trained Professionals Sarin and Jain (2013) raise an important issue of the dichotomy in the Indian mental health sector, with a shortage of well-trained professionals for the poor in the DMHP system and a burgeoning private health sector with growing number of professionals for those who can afford to pay. As members of the Mental Health Policy Group, that reviewed the functioning of DMHP across the country, they found that ground realities were quite different from the DMHP’s stated objectives (Sarin and Jain 2013). The challenges faced varied across districts, with human resource constraints in some, shortage of medication in others and low utilisation in certain states. Capacity and Design Issues Some of the core issues affecting the DMHP identified by the Mental Health Policy Group were: • • • • • • • • •

Lack of public health and technical capacity, Fragmentation of responsibilities for mental healthcare, Poor information base for planning services, Inconsistent fund flows, Inadequate human resources and training, Non-availability of treatments, IEC activities, Lack of integration of mental health in primary care and Limited accessibility.

Further, the policy group also found the following lacunae in the DMHP design: • • • • • • • • • •

Inadequate provision of care for full range of mental illness, Crisis management and inpatient service, Continuing care in the community, Homelessness and mental illness, Enthusiasm of health staff, Lack of involvement of users and caregivers, Poor NGO and private sector participation, Disability certification, Intra and inter-sectoral coordination and Urban facilities.

In order to address these gaps, the policy group suggested that in the 12th Plan, the DMHP should have: • Improved programme management, • Community involvement,

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• • • • • • •

Technical support, Monitoring and evaluation systems, Revitalised human resources, Continuing care, Regular supply of medicines, Staggered coverage of the entire country, Partnerships with academic institutions and voluntary organisations at district and state level, • Life skills education, • Operational research and other forms of research including participatory action research and • Programme in urban areas.

1.1.5 Impact of the DMHP Increased Community Awareness About Mental Illness An evaluation of the DMHP found that awareness programmes seem to have made an impact, with a larger proportion of population in DMHP districts (86.9%) rather than non-DMHP districts (74.7%) being aware about mental illness and a lower proportion of population in DMHP districts than non-DMHP districts stating that they would consult a faith healer for mental illness (Indian Council for Market Research 2009). Further, a lower proportion of population in DMHP than non-DMHP districts stated that mental illness was caused by occult practices/evil spirits, and that persons with mental illness cannot be taken care at home. This indicates that people’s awareness and attitude about mental illness was better in DMHP districts due to the awareness campaigns and better availability of mental healthcare services. Client Satisfaction with Services In addition, nearly three-fourth (75.7%) of clients reported that they were treated with dignity and respect at DMHP clinics and a ranking of districts on client satisfaction found that Madurai district in Tamil Nadu was ranked first (Indian Council for Market Research 2009). Most of the clients (90%) revealed that the diagnosis was explained to them. First point of Contact with Mental Healthcare and Accessibility Importantly, only 11.5% of clients’ first point of contact was a PHC when compared with 61% accessing a district hospital as the first point of care, contrary to the idea behind DMHP (Indian Council for Market Research 2009). Majority of clients (60.7%) reported that district hospitals were their first point of contact, reflecting that decentralisation of mental healthcare had not yet made its mark. However, only 8.8% of them stated that a mental hospital was their first point of contact, indicating that DMHP had resulted in availability of mental healthcare in general health settings. Nearly two-fifth of clients stated that they had to travel up to 5 km to reach a DMHP clinic, and 17.7% had to travel more than 10 km. On average, clients had to spend Rs. 45 on transport.

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Supply-Side Bottlenecks There were supply-side issues like only a quarter of districts receiving a regular supply of psychiatric medicines, delayed release of funds, training coverage of only half of health personnel (55%), inadequate clarity among health personnel about goals of DMHP, all of which affects service delivery (Indian Council for Market Research 2009). Utilisation of funds for DMHP was more than 80% in districts surveyed in West Bengal, Tamil Nadu, Assam, Delhi and Madhya Pradesh, nearly 70% in Andhra Pradesh (undivided) and Rajasthan; and less than 50% in Maharashtra and Gujarat (Indian Council for Market Research 2009). Disaggregation of utilisation by components like salary, purchase of medicine and equipment, training and public education campaigns, shows that utilisation was least in the case of trainings and public education campaigns. Utilisation for training was highest in Karnataka, Rajasthan and Assam, whereas that for awareness campaigns was highest in Tamil Nadu and Rajasthan. This is a matter of concern, as training of PHC staff is an important component of the DMHP model, which requires integration of mental healthcare with primary health systems. In the absence of training, the programme is bound to fail as doctors in PHCs will not be able to diagnose and prescribe medicines and ANMs will not be able to identify persons with mental illness in the community. It is also telling that funds for training show highest utilisation in the state where the DMHP was designed and piloted. Interviews with health personnel involved in DMHP implementation, however, reflected that nearly 85% of medical personnel felt that spreading awareness was the main purpose of the programme, followed by integration of mental health with general health services. Psychiatrists and clinical psychologists felt that capacity building of health personnel in the area of mental health was the main aim of the programme. Even with variations among different categories of health personnel, it was clear that all of them understood the importance of awareness generation, integration of mental health with general health and capacity building. The evaluation attributed the lower utilisation of funds for training and public education to lack of organisational skills in the DMHP team, lack of coordination with the district health system and poor community participation (Indian Council for Market Research 2009). Related to the low utilisation of funds for training, the evaluation found that only 55% of the medical personnel had received training on mental health. Only in Karnataka, Assam, Madhya Pradesh and Uttar Pradesh did all the health personnel receive training (Indian Council for Market Research 2009). While all health personnel favoured an increase in the frequency of training; medical officers, ANMs and health workers suggested that the language and content should be simplified and should be demonstrated using cases (Indian Council for Market Research 2009). Nearly three-fourth of all the districts which were studied had to contend with challenges of maintaining regular availability of drugs due to deficiency of a dedicated drug procurement system in the DMHP (Indian Council for Market Research 2009). None of the staff involved in DMHP in Assam and Rajasthan reported that drug supply was regular. It was only in Andhra Pradesh (undivided), Maharashtra, Tamil Nadu and Karnataka where nearly all the DMHP staff said that drug supply was regular. When confronted with drug shortages, nearly 60% of DMHP staff reported that they advised clients to buy it from the market. It was only in Karnataka, Tamil

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120 100 100

DMHP coverage

100

78.1

80

67.7

60 40

63.5 55.6

60.6 48.7

33.3

22.1 20 14.3

16.7

76.9

19.9

14.2 13.7

25.2 21.2 14.9 13.6

51.8 40 23 18.7

0

Districts covered by DMHP

Population covered by DMHP

Fig. 1.1 DMHP coverage of districts and population in National Mental Health Survey states in 2015–16 (as %). Source National Institute of Mental Health and Neuro Sciences 2016a, National Mental Health Survey of India 2015–16: Mental Health Systems, Bengaluru: NIMHANS

Nadu and Rajasthan that health personnel had arranged for procurement of drugs from neighbouring districts. But even with drug shortages, 80% of users stated that they had received some medicines from the DMHP clinic.

1.1.6 DMHP Coverage Information from the NMHS 2015–16 shows that Kerala was the only state where all districts were covered by the DMHP, although the aim was to cover all districts in the country (Fig. 1.1). The percentage of districts covered by DMHP was more than 50% only in like Tamil Nadu, Manipur, Chhattisgarh, Gujarat and West Bengal. Consequently, population coverage was also relatively high in these states.

1.2 Complexities in Measuring Outcomes in Mental Health Unlike many of the flagship programmes of the government like Mahatma Gandhi Rural Employment Scheme (MGNREGS), Sarva Shiksha Abhiyan (SSA) and

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National Rural Health Mission (NRHM), which are often at the centre of policy discourse in the government, among academics and activists, DMHP is rarely at the forefront of debates. In a country with unacceptably high infant mortality rates (IMR), maternal mortality ratios (MMR), child undernutrition rates, maternal anaemia, poor availability of employment throughout the year, persistent poverty levels and low completion of primary schooling, it follows that these issues will take centre stage. Besides, the impact of NRHM can be measured using indicators like full immunisation of children, antenatal coverage of pregnant women, institutional childbirth, IMR and MMR from sample surveys conducted by the government like Sample Registration System (SRS), National Family Health Survey (NFHS), District Level Household and Facility Survey (DLHS) and Annual Health Survey (AHS). The impact of public health interventions like sanitation and social welfare interventions like Integrated Child Development Services (ICDS) is reflected to some extent in child underweight and stunting data from the NFHS. However, due to the complex nature of mental illness and stigma surrounding it, there are no periodic national level surveys by the government on prevalence of mental illness. The first national survey on mental health was conducted in 2015–16. Until then, there were only a few meta-analyses based on which estimates have been derived. And unlike death or child underweight or anaemia which is measurable and can be tracked periodically, there are practical problems in measuring outcomes like improved functioning and reduced severity of mental illness, as those involve the use of psychiatric rating scales that can be administered by skilled staff. So even after two decades of DMHP, only information on fund allocation and utilisation, availability of human resources, availability of psychiatric medicines, training of health personnel, referral pathways, number of clients utilising the clinics, community awareness about mental illness and client satisfaction are available, and that too only when an evaluation is done. These are important domains, as non-availability of trained human resources and psychiatric medicines, and delayed release of funds will adversely affect programme implementation. And community attitudes will determine the extent to which the programme is accepted and utilised. For instance, deeply entrenched traditional beliefs about mental illness and faith healing are known to deter community members from utilising allopathic mental health care. The evaluations have not highlighted the issue of continuity of care, which is important in the case of severe mental disorders nor of improvements in quality of life and functioning.

1.3 National Mental Health Policy of India, 2014 and Community Mental Health Programme The category ‘disabled’ was recognised by the Constitution of India for state support and Article 41 of the Directive Principles of State Policies stated that ‘The State shall, within the limits of its economic capacity and development, make effective provision for securing the right to work, to education and to public assistance in

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cases of unemployment, old age, sickness and disablement, and in other cases of undeserved want’. The tone of this statement alludes to provision of services to categories that impose burden on the state by referring to their needs as undeserved. India now has a dedicated mental health policy, National Mental Health Policy of India 2014, which articulates government’s principles, objectives and areas of action to improve the mental health of the population. The policy emphasises universal access to mental health care while calling for rights of persons with mental health issues to be respected. The vision of the policy is ‘to promote mental health, prevent mental illness, enable recovery from mental illness, promote destigmatisation and desegregation, and ensure socio-economic inclusion of persons affected by mental illness by providing accessible, affordable and quality health and social care to all persons through their life span, within a rights-based framework’ (Ministry of Health and Family Welfare 2014: 3). The National Mental Health Policy of India 2014 sets forth the following objectives: • To provide universal access to mental healthcare. • To increase access to and utilisation of comprehensive mental healthcare services, including to vulnerable groups like homeless, persons living in remote areas and socio-economically deprived. • To reduce prevalence and impact of risk factors of mental health problems. • To reduce risk and incidence of completed and attempted suicide. • To ensure rights and protection from harm to persons with mental health issues. • To reduce stigma associated with mental health problems. • To improve availability and equitable distribution of human resources in mental health. • To increase financial allocation for mental healthcare. • To identify social, biological and psychological determinants of mental health and provide appropriate interventions. The policy reiterates commitment to integration of mental healthcare with existing primary healthcare systems, thus strengthening the WHO approach to community mental healthcare. On community participation, the policy argues for participation service users and caregivers in programme planning and design. In a departure from policies that offer silent endorsement to patriarchal notions of familial (invariably female) responsibility being the fulcrum of caregiving, the policy recognises the challenges faced by caregivers and the care vacuum that will arise when elderly caregivers pass away. Another noteworthy element of the policy lies in it promoting the inclusion of persons with mental health issues in access to social welfare programmes. In order to address the mental healthcare needs of the community and reduce treatment gap, the policy promotes increased production of human resources in mental health. Further, the policy recommends training of general health professionals, laypersons and users and caregivers to deliver various aspects of mental healthcare in the community like identification, public education campaigns, treatment, follow-up and rehabilitation.

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While the policy accepts that bulk of mental healthcare must be provided in community settings, it makes provision for a small proportion of persons with mental health issues who may require institutional care. Moving away from the rural-centric lens of the DMHP, the policy makes a strong argument for implementation of the programme in urban areas as well. The National Mental Health Policy of India is a groundbreaking document for a country that has lagged behind in providing adequate mental healthcare for its people. As stated in the Executive Summary, the policy underlies the Government’s belief that mental health is an integral part of the overall health endeavour. In its preamble, the policy has already noted its dynamic nature, with it growing from the engagement and feedback of all stakeholders. Some of the key components of the National Mental Health Policy of India are as follows: • A holistic approach to health has been highlighted that acknowledges the strong association between mind, body and soul. Mental health too has been defined in a holistic manner as a state of well-being and not just as the absence of mental disorder. • Its focus on ‘mental health problems’, which range from the presence of psychosocial distress to mental illness and mental disability emphasises the understanding that mental health rather than being categorical falls on a continuum. • Its focus on ‘recovery’ is empowering in its approach as it emphasises the agency of persons with mental illness (PWMI). • Mental health has been viewed from a medical and non-medical perspective indicating an understanding of its multifaceted nature and thus a need for a multipronged approach in mental healthcare. This includes addressing the social determinants of mental health such as poverty and education. • A rights-based approach has been used wherein equity in the provision of mental health services for all, including persons from vulnerable groups, equity in the national health budget allocation for mental health as well as the nondiscrimination and equal opportunities for persons with mental health problems (PWMHP) and PWMI. • Integrated care has been emphasised with the need to have a primary healthcare approach such that mental health services are universally available and accessible. • A participatory approach has been advocated wherein service users, caregivers and the community in general are involved in the planning, development, delivery, monitoring and evaluation of mental health services. • Cross-cutting issues such as stigma, homelessness, persons affected by disasters and emergencies, inter-sectoral collaboration underline the fact that mental health needs to be approached in a comprehensive manner. • Promotion of mental health has been focused on in a broad-based manner with emphasis on the building of programmes that cater to children and young people as well as adults through different fora such as anganwadi centres (governmentfunded preschool education programmes), schools, workplaces and media. • The lack of availability of adequately trained mental health human resources has been addressed by underlining the need to train a higher number of mental health

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professionals as well as the need to train all health personnel—general or specialists in mental health.

1.4 Mental Healthcare Act 2017 and Community Mental Healthcare The Mental Healthcare Act (MHA) 2017 is a big step forward in terms of mental healthcare in India, as it aims to align the laws of India to the Convention on Rights of Persons with Disabilities, which India ratified in 2007 (The Gazette of India 2017). The primary focus, which is reflected in the language of the Act is on the rights of persons with mental illness as well as the right to mental healthcare in noncustodial settings that are acceptable to the client. The MHA has certainly made a comprehensive movement forward from the Mental Health Act 1987, in that it moves away from institutional care. However, the Act while focusing on rights of persons with mental illness does not sufficiently address caregivers’ needs, although bulk of caregiving occurs in family settings. Further, it remains to be seen how successful the Act is in ensuring fiscal support from the government and integration of mental healthcare in various levels of public healthcare system. Some of the key components of the Act are as follows.

1.4.1 Mental Illness and Capacity to Make Mental Healthcare and Treatment Decisions In Chap. 2, the Act specifies that mental illness should be determined only according to nationally or internationally accepted medical standards as notified by the Government of India and not according to an individual’s political or religious beliefs or an individual not conforming to norms. The Act also recognises the right of persons with mental illness to make decisions regarding treatment providing he/she has the capacity to understand information that is relevant to treatment, understand the consequence of decision and is able to communicate the decision.

1.4.2 Right of Persons with Mental Illness to Access Mental Healthcare and Community Living The Act ensures every person the right to access mental healthcare and treatment from mental health services run or funded by the appropriate government. This emphasis is on the provision of mental health services, which are geographically accessible,

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of adequate quantity, monetarily affordable and of good quality. The onus is thus on the appropriate Government to expand the breadth and depth of their services. The addition that the mental health services ‘be provided in a manner that is acceptable to persons with mental illness and their families and caregivers’ (Chapter V Section 18 Subsection (2)) brings into focus that in a culturally diverse country like India care needs to be taken that the services provided incorporate the voices of the service users, caregivers and the community in general. The inclusion of health professionals of Ayurveda, yoga, Unani, siddha, homoeopathy or naturopathy systems in the provision of mental health services, is also an acknowledgement of the diversity in mental health services needed. The Act also underlines the need for the appropriate government to provide a range of services (Chapter V Section 18 Subsection (3 & 4)) which include communitybased rehabilitation establishments and services. The emphasis on integration of mental healthcare with general healthcare services at all levels is articulated in Chapter V Section 18 Subsection 5 as follows: The appropriate Government shall,— (a) integrate mental health services into general healthcare services at all levels of healthcare including primary, secondary and tertiary healthcare and in all health programmes run by the appropriate Government; (b) provide treatment in a manner, which supports persons with mental illness to live in the community and with their families; (c) ensure that the long term care in a mental health establishment for treatment of mental illness shall be used only in exceptional circumstances, for as short a duration as possible, and only as a last resort when appropriate community-based treatment has been tried and shown to have failed; (d) ensure that no person with mental illness (including children and older persons) shall be required to travel long distances to access mental health services and such services shall be available close to a place where a person with mental illness resides; (e) ensure that as a minimum, mental health services run or funded by Government shall be available in each district; (f ) ensure, if minimum mental health services specified under sub-clause (e) of subSection (4) are not available in the district where a person with mental illness resides, that the person with mental illness is entitled to access any other mental health service in the district and the costs of treatment at such establishments in that district will be borne by the appropriate Government.

The government has to notify Essential Drug List and all medicines on the Essential Drug List as well as medicines from alternate systems should be made available freeof-cost to all persons with mental illness at all times at health establishments run or funded by the appropriate government starting from Community Health Centres and upwards in the public health system. The right of a person with mental illness to live in the community and not be segregated from society is specified by the Act in Chapter V Section 18 Subsection (1, 2 & 3). Further, PWMI does not have to remain confined to a mental health institution only because he/she does not have a family or is not accepted by his/her family. In case it is not possible for PWMI to live with their family, the government is

1.4 Mental Healthcare Act 2017 and Community Mental Healthcare

19

supposed to provide legal aid to the client to exercise his/her right to live in the family home or the option to reside in less restrictive community-based establishments like group homes or halfway homes. The duties of the appropriate government also include the provision of educational and training programmes to increase the human resources available to deliver mental health interventions and to improve the skills of the available human resources to better address the needs of persons with mental illness (Chapter 6 Section 31 & 32). The appropriate government is expected to train all medical officers in public healthcare establishments and all medical officers in the prisons or jails to provide basic and emergency mental healthcare. Further, the government has to make efforts to meet internationally accepted guidelines for number of mental health professionals on the basis of population within 10 years from the commencement of the Act. It remains to be seen how the Act is implemented in practice, as some of the other rights-based legislation like the one related to education, food and employment that were deemed to be progressive have retained rights only on paper. For instance, while the state was legally bound to provide 100 days of work under Mahatma Gandhi National Rural Employment Act, in practice this was observed only in Tripura. In order to understand the challenges ahead in ensuring that right to mental healthcare is implemented, we need to understand the prevalence of mental illness, public expenditure and situation of public health infrastructure which is expected to deliver mental healthcare in the country.

1.5 Prevalence of Mental Illness in India and Treatment Gap Mental, neurological and substance (MNS) use disorders were the leading causes of years lost to disability (YLD), with unipolar depressive disorders (8.3%), alcohol use disorders (6.8%), schizophrenia (2.8%) and bipolar disorders (2.5%) accounting for nearly 20% of YLD (World Health Organisation 2008c). While unipolar depression was the third leading cause of burden of disease as measured in DALYs in 2004, it is expected to be the leading cause by 2030 (World Health Organisation 2008c). A meta-analysis of the literature reveals that the prevalence of psychiatric disorders was 58.2 per 1000 in India (Reddy and Chandrashekar 1998). The prevalence of schizophrenia was 2.7 per 1000, affective disorders was 12.3 per 1000, neurosis was 20.7 per 1000, mental retardation was 6.9 per 1000, epilepsy was 4.4 per 1000 and alcohol/drug addiction was 6.9 per 1000 (Reddy and Chandrashekar 1998). Further, they found that the prevalence rate of MNS disorders was much higher in urban (80. 6 per 1000) than rural (48.9 per 1000) areas. According to the National Mental Health Survey 2015–16 based on 12 states in India, the prevalence of psychiatric disorders was estimated at 10.5%, which indicates that nearly 150 million people needed mental healthcare (Fig. 1.2).

Prevalence of psychiatric disorders (as %)

20

1 Mental Healthcare Services in the Community …

16 14 12 10 8

12.7

11.6

13.9 13.4 11.6 11.8

11.2 7.8

11.8 10.5

8.6 6.6

6 4 2 0

States Fig. 1.2 Prevalence of psychiatric disorders (current) across 12 states, 2015–16 (as %). Source National Institute of Mental Health and Neuro Sciences 2016b, National Mental Health Survey of India 2015–16: Prevalence, Pattern and Outcomes. Bengaluru: NIMHANS

States like Manipur, Madhya Pradesh, Punjab and West Bengal had an exceedingly high prevalence of psychiatric disorders, whereas Assam, Uttar Pradesh and Gujarat had relatively lower prevalence. The current prevalence of neurotic- and stress-related disorders was 3.5%, and that of severe mental disorders such as schizophrenia was 0.42% and mood disorders was 2.8% (National Institute of Mental Health and Neuro Sciences 2016b). Alcohol use disorders were prevalent among 4.6% of the population in the 12 states (National Institute of Mental Health and Neuro Sciences 2016b). Shidaye and Patel (2010) found that instances of recent experience of intimate partner violence (IPV) were strongly associated with common mental disorders (CMDs) among currently married women in the age group 15–39 years. Information from the National Family Health Survey 4 in 2015–16 shows that 28.8% of ever-married women years stated that they experienced some form of spousal violence (International Institute for Population Sciences and ICF 2017). Latest data reveal that 1.33 lakh people in India committed suicide in 2015, with a suicide mortality rate of 10.6 per 1 lakh population (National Crime Record Bureau 2016). India reports at least 15 suicides in every hour (National Crime Record Bureau 2016). A larger share of all suicides in India was accounted for by Maharashtra (12.7%), Tamil Nadu (11.8%), West Bengal (10.9%), Karnataka (8.1%) and Madhya Pradesh (7.7%). Suicide mortality rates, as displayed in Table 1.1, were the highest in the states of Sikkim (37.5/100,000), Chhattisgarh (27.7/100,000), Telangana (27.7/100,000), Tamil Nadu (22.8/100,000) and Kerala (21.6/100,000). Suicide mortality rates were comparatively lower in the northern states (Punjab, Himachal Pradesh, Rajasthan, Jammu & Kashmir, Uttarakhand and Delhi), with Haryana being

1.5 Prevalence of Mental Illness in India and Treatment Gap

21

Table 1.1 Suicide mortality rate for the general population by gender in India, statewise, 2015 States North

Central

East

Northeast

Suicide mortality rate per 100,000 population Person

Male

Haryana

13.0

19.1

6.0

Himachal Pradesh

7.7

9.6

5.7

Jammu & Kashmir

3.0

3.1

2.9

Punjab

3.6

5.2

1.8

Rajasthan

4.8

6.8

2.7

Uttarakhand

4.5

6.5

2.5

Chhattisgarh

27.7

38.8

16.8

Madhya Pradesh

13.3

15.7

10.9

Uttar Pradesh

1.8

2.0

1.6

Bihar

0.5

0.5

0.5

Jharkhand

2.5

3.3

1.7

Odisha

9.7

11.2

8.2

West Bengal

15.7

19.0

12.3

Arunachal Pradesh

10.4

13.0

7.5

Assam

10.0

14.4

5.5

Manipur

1.4

1.6

1.3

Meghalaya

6.2

9.5

3.0

Mizoram

11.7

18.7

4.3

Nagaland

0.9

1.3

0.4

37.5

50.0

23.7

Tripura

19.6

24.6

14.7

Goa

15.4

21.1

9.0

Sikkim West

South

All-India

Female

Gujarat

11.6

14.4

8.7

Maharashtra

14.2

20.4

7.6

Andhra Pradesh (undivided)

18.7

26.4

10.9

Karnataka

17.4

23.8

10.9

Kerala

21.6

33.6

10.3

Tamil Nadu

22.8

31.0

14.6

10.6

14.1

7.0

Note The data have not been adjusted for age; data for Andhra Pradesh and Telangana are presented under undivided Andhra Pradesh Source Calculated from National Crime Records Bureau 2016, Accidental Deaths and Suicides in India 2015. New Delhi: Government of India; Census of India 2006, Population projections for India and States 2001–2026. New Delhi: Government of India

22

1 Mental Healthcare Services in the Community …

the sole exception; and higher than the national average in Chhattisgarh. The eastern state of West Bengal and north eastern states of Sikkim and Tripura, western states of Goa and Maharashtra and all four southern states had high suicide mortality rates. The National Commission on Macroeconomics and Health reported that the treatment gap for various mental disorders were 60% for schizophrenia, 62% for bipolar disorder, 72% for depression, 84% for panic disorder, 77% for alcohol dependency and 55% for epilepsy (Gururaj et al. 2005). In 2015–16, treatment gap for various mental disorders was 70.4% for bipolar affective disorders, 75.5% for psychotic disorders, 85.2% for major depressive disorders, 83.2% for neurosis and 86.3% for alcohol use disorders, indicating an increase over time (National Institute of Mental Health and Neuro Sciences 2016b). The extremely high treatment gap of mental disorders could be due to a combination of factors like low public expenditure on mental, increased presence of private sector in health care provision and poor availability of specialist human resources.

1.6 State Expenditure on District Mental Health Programme In India, the 1990s were marked by macroeconomic reforms, wherein the emphasis on compression of expenditure on social sector meant that the government focused attention on selective primary care comprising reproductive and child health services, rather than comprehensive primary healthcare (Qadeer 1999). The national health policies (post-Bhore Committee) envisaged an important role for private sector participation in health delivery, with the result that contractions in public expenditure on healthcare were accompanied by increased presence and utilisation of private health services. Public expenditure on health as a percentage of gross domestics product (GDP) has been estimated to be 0.84% in 2004–05 and provisional estimates for 2008–09 shows that it was expected to remain at an abysmally low level of 1.1% (Government of India 2009). Information from the National Health Profile 2018 shows that public expenditure on health was 1.02% of the GDP (Central Bureau of Health Intelligence 2018). Latest data demonstrate stagnation, as public health expenditure on health remained at 1.15% of GDP (National Health Systems Resource Centre 2017). Further, an analysis of allocation on health in India by Bhat (2012) has revealed that mental health accounts for less than one per cent of total health expenditure, which works out to a meagre Rs. 20 per patient per year when compared to other illnesses like HIV-AIDS (Rs. 7175 per patient), cancer (Rs. 804 per patient) and tuberculosis (Rs. 1750 per patient). A state mental health systems assessment of policy/programme implementation showed the low priority accorded to mental health in most of the 12 states that were surveyed, except for Gujarat, Kerala and Tamil Nadu. An analysis of state budgets in 2015–16 revealed that only Gujarat and Kerala had a separate budget head for mental health (National Institute of Mental Health and Neuro Sciences 2016a).

1.6 State Expenditure on District Mental Health Programme

23

Despite the National Mental Health Policy 2014 and MHA 2017 emphasising integration of mental healthcare with the public healthcare system, this does not receive fiscal backing as evident from the Union Budget 2018–19. While the allocation to National Mental Health Programme for the entire country through which the DMHP is routed received only Rs. 50 crores; a single institution, NIMHANS received an outlay of Rs. 382 crores. This reflects the extent of government commitment to community mental healthcare. It is difficult to comprehend how Rs. 50 crores is going to address the huge unmet need for mental healthcare—more than 70% of those with mental illness do not receive treatment in India. It is also doubtful how this outlay will achieve the budget’s outcome framework for mental health, which is to increase the number of registrations of people with mental illness by 10%. The likely end result of this low budgetary allocation is that the health system will not expand leaving millions without access to affordable mental healthcare. Information on the share of approved and available budget on DMHP that was actually spent by states is displayed in Table 1.2. The Table reveals that spending by all states and union territories was less than one-third of the approved budget and nearly one-fourth of the available budget. This reveals low political support for the programme, with even the meagre allocation not being spent by the states. The only states in which expenditure on DMHP as share of the approved budget was more than 50% were West Bengal (83.5%), Kerala (68.1%), Himachal Pradesh (63.9%), Karnataka (59.7%), Nagaland (57.6%) and Punjab (55%). Except for West Bengal, the same states spent more than 50% of their available budget. West Bengal spent less than one-third of the available budget on DMHP. Although states like Manipur, Madhya Pradesh, Punjab and West Bengal had a relatively high prevalence of psychiatric disorders, only West Bengal and Punjab spent a large share of the approved budget for DMHP.

1.7 Can Public Health Infrastructure and Human Resources in Health in India Support Mental Healthcare Provision? National reports have highlighted the inadequacy of public health infrastructure and human resources in health sector in India that are huge barriers in access to health. Given that public expenditure constitutes a low share of GDP in India, this state of affairs is unsurprising, despite the big push for rural health through the National Rural Health Mission (now known as National Health Mission). Further, budgetary allocation towards National Health Mission (NHM) has declined in 2018–19. Yet, as NMHP 2014 and MHA 2017 have made a strong argument for integration of mental healthcare with primary healthcare system, it is pertinent to understand whether the existing public health infrastructure and human resources are in a position to cope. Jacob (2011) had elucidated the pitfalls of the WHO approach due to an overburdened and underfunded public health infrastructure, which is unable to cope with demands

24

1 Mental Healthcare Services in the Community …

Table 1.2 Share of approved and available budget spent by states on District Mental Health Programme, 2016–17 (as %) States

Expenditure from approved budget

Expenditure from available budget

Haryana

NA

NA

Himachal Pradesh

63.9

8.0

Jammu & Kashmir

7.5

2.8

Punjab

55.0

55.0

Rajasthan

6.6

6.6

Uttarakhand

0

0

Chhattisgarh

44.8

19.6

Madhya Pradesh

17.9

17.9

Uttar Pradesh

38.5

20.1

Bihar

26.5

26.5

Jharkhand

21.8

21.5

Odisha

39.1

39.1

West Bengal

83.5

31.4

Arunachal Pradesh

18.5

18.5

Assam

6.8

6.8

Manipur

0

0

Meghalaya

13.1

7.3

Mizoram

41.2

38.6

Nagaland

57.6

57.6

Sikkim

45.8

45.8

Tripura

5.3

5.2

Goa

31.4

18.2

Gujarat

21.2

15.9

Maharashtra

45.1

38.9

Andhra Pradesh

NA

NA

Telangana

0

0

Karnataka

59.7

59.1

Kerala

68.1

68.1

Tamil Nadu

18.7

18.3

All-India

31.3

23.7

Source Financial Management Report 2016–17, National Health Mission (http://nhm.gov.in/nrhmcomponents/nhm-finance.html?layout=edit&id=544)

1.7 Can Public Health Infrastructure and Human Resources in Health in India …

25

for general healthcare. In fact, MHA 2017 makes access to mental healthcare through all levels of public healthcare system a justiciable right, although access to health per se is not a right. Insufficient government investment in health has resulted in inadequate availability of human resources, particularly in the public health sector, as nearly three-fourth was in the private sector. According to the National Commission on Macroeconomics and Health (Gururaj et al. 2005), nearly 75% of the human resources and advanced medical technology, 68% of an estimated 15,097 hospitals and 37% of 623,819 total beds in the country were in the private sector. Further, there are considerable regional disparities in the distribution of health services. Table 1.3 presents information on shortfall in availability of PHCs, key human resource shortages and average population served by PHCs and government allopathic doctors using data from Rural Health Statistics 2016–17 (Ministry of Health and Family Welfare 2017) and National Health Profile 2018 (Central Bureau of Health Intelligence 2018) across all states in India. The data shows that India has a shortage of PHCs. States that had a shortage of PHCs were Haryana, Punjab, Madhya Pradesh, Uttar Pradesh, Bihar, Jharkhand, Odisha, West Bengal, Gujarat, Maharashtra, Andhra Pradesh and Telangana. With shortage of basic health infrastructure, it is not clear how MHA 2017 can be operationalised in these states. The remaining states have a surplus of PHCs. On average, a PHC in India covers 32,505 people. The population that is served by a PHC ranges from 7457 in Arunachal Pradesh to 84,361 in Jharkhand, indicating the challenges of mental health service provision for PHCs that serve a large population, as some components like identification, public education and follow-up reminder are provided by health staff by visits to the community. In states like Karnataka, Himachal Pradesh, Jammu & Kashmir, Nagaland and Mizoram, PHCs serve a smaller population. The availability of female health workers/Auxiliary Nurse Midwife (ANM) who play in delivering healthcare to the community is another area of concern. While there is a surplus of ANMs in India, some states like Jharkhand, Tripura, Tamil Nadu, Karnataka and Gujarat have a relatively high shortage. The country also has a shortage of pharmacists. As the DMHP and the NMHP 2014 depend on training of general health doctors to deliver mental healthcare, the data shows that while on an average most PHCs in India have a surplus of doctors, there is a deficit in states like Chhattisgarh, Himachal Pradesh, Madhya Pradesh, Bihar, Odisha, Arunachal Pradesh, Gujarat and Karnataka. While the WHO norm for doctor–population ratio is 1:1000, in India no state meets the norm, if we consider the data on government allopathic doctors. However, some states might be closer to the benchmark if we include private doctors as well, though the RHS does not publish that data. The only states that came close to the WHO norm if we consider government allopathic doctors were Jammu & Kashmir, Himachal Pradesh, Uttarakhand, North Eastern states and Kerala. Clearly, as the Act requires the provision of mental healthcare through the government health system, the fact that on an average a government doctor has to serve nearly 11,000 people indicate overburdening of existing staff. This raises the question of how the government will implement the Mental Healthcare Act.

966

1315

2153

48

West Bengal

Arunachal Pradesh

3099

Bihar

Odisha

5194

Uttar Pradesh

Jharkhand

774

1989

Madhya Pradesh

238

Uttarakhand

Chhattisgarh

578

1861

327

Jammu & Kashmir

Rajasthan

212

Punjab

550

Himachal Pradesh

Required

143

914

1280

297

1899

3621

1171

785

257

2079

432

637

538

366

In position

Primary Health Centre

Haryana

States

7457

68,034

27,321

84,361

48,626

42,893

44,882

24,978

27,381

24,772

40,149

14,298

11,480

45,108

Average rural population covered by a Primary Health Centre

455

11,283

7968

4145

11,848

24,142

10,363

5971

2104

16,485

3382

3604

2621

2955

Required

481

18,449

8084

3957

23,390

31,716

11,546

6834

2083

16,211

4893

4737

1786

4432

In position

Female health worker/ANM at subcentres and PHCs

143

914

1280

297

1899

3621

1171

785

257

2079

432

637

538

366

Required

122

1390

940

331

1786

2209

954

341

215

2382

568

704

492

429

In position

Doctors at PHCs

2417

10,411

12,744

18,518

28,391

19,962

17,192

15,916

7911

10,976

9817

3060

4639

10,189

Average population served by a government allopathic doctor

Table 1.3 Primary health infrastructure and human resources in health in rural areas of India, statewise, 2017 (as absolute numbers)

206

1263

1650

485

2049

4443

1480

954

317

2658

583

721

627

478

Required

(continued)

89

1381

1691

238

287

2883

1687

887

307

623

779

737

394

419

In position

Pharmacists at PHCs and CHCs

26 1 Mental Healthcare Services in the Community …

109

19

Tripura

Goa

Kerala

Tamil Nadu

25,650

1362

849

2359

689

1147

1814

1392

24

93

24

126

57

109

85

1014

In position

32,505

27,335

20,578

15,884

31,328

30,319

33,934

24,924

22,989

29,166

19,042

11,171

9218

21,756

23,784

26,437

Average rural population covered by a Primary Health Centre

18,1881

10,074

6229

11,740

5486

8605

12,394

10,474

238

1080

171

522

427

545

506

5635

Required

22,0707

7957

7950

7152

7848

12,073

12,135

8859

195

720

196

569

640

1075

923

9056

In position

Female health worker/ANM at subcentres and PHCs

25,650

1362

849

2359

689

1147

1814

1392

24

93

24

126

57

109

85

1014

Required

27,124

2759

1169

2136

966

1644

2929

1229

56

156

30

122

56

112

194

1048

In position

Doctors at PHCs

11,082

9544

6810

13,556

9343

10,189

16,996

11,475

3883

3038

2437

5386

2458

4791

2358

5395

Average population served by a government allopathic doctor

Note ANM is Auxiliary Nurse Midwife; PHC is Primary Health Centre; CHC is Community Health Centre Source Ministry of Health and Family Welfare 2017, Rural Health Statistics 2016–17. New Delhi: Government of India

29,337

589

1251

Karnataka

All-India

768

1306

Telangana

1197

18

Sikkim

2201

68

Nagaland

Andhra Pradesh

25

Mizoram

Maharashtra

114

Meghalaya

1290

80

Gujarat

954

Manipur

Required

Primary Health Centre

Assam

States

Table 1.3 (continued)

31,274

1747

1081

2565

803

1340

2174

1755

28

114

26

147

66

136

102

1172

Required

25,193

1391

1102

2523

814

994

2082

1665

51

148

10

101

59

166

152

1384

In position

Pharmacists at PHCs and CHCs

1.7 Can Public Health Infrastructure and Human Resources in Health in India … 27

28

1 Mental Healthcare Services in the Community …

1.7.1 Human Resource Gap in Mental Health

Mental health specialist human resources per 1 lakh population

Nearly three-fourth of mental health professionals were employed in the private sector in India and the shortage of psychiatrists was 77%, psychologists were 97% and psychiatric social workers were 90% (Gururaj et al. 2005). In 2015–16, the poor availability of human resources in mental health continues to remain as a barrier for seeking treatment. Among the states that were surveyed in the National Mental Health Survey of India 2015–16, none of the states except Kerala met the requirement of at least 1 psychiatrist per lakh population. Kerala had 1.2 psychiatrists per lakh population and 0.6 clinical psychologists per lakh population, though the number of psychiatric social workers was less than 0.1 per 1 lakh (Fig. 1.3). Manipur was another relatively well-performing state in respect of human resources in mental health with 0.5 psychiatrists per lakh population, 0.4 clinical psychologists per 1 lakh population and 0.6 psychiatric social workers per lakh population. Gujarat and West Bengal also had a higher ratio of psychiatrist to population at around 0.5 per lakh population. Even states with relatively high gross state domestic product (GSDP) like Tamil Nadu and Punjab, which have a good record on several health indicators display low availability of specialist human resources in mental health. Madhya Pradesh, Uttar Pradesh, Rajasthan and Chhattisgarh were very poorly resourced in availability of specialist human resources in mental health.

1.4 1.2 1 0.8 0.6 0.4 0.2 0

Psychiatrist

Clinical psychologist

Psychiatric social worker

Fig. 1.3 Mental health specialist human resources in National Mental Health Survey States (per lakh population), 2015–16. Source National Institute of Mental Health and Neuro Sciences 2016a, National Mental Health Survey of India 2015–16: Mental Health Systems, Bengaluru: NIMHANS

1.7 Can Public Health Infrastructure and Human Resources in Health in India …

29

1.7.2 Dominance of Private Sector in Healthcare Utilisation The dominance of the private sector in health care provision is reflected in the data from the National Sample Survey Office’s report on morbidity, which shows that for ambulatory care (71.7% in rural and 78.8% in urban areas) and hospitalisation (58.1% in rural and 68% in urban), a large proportion of ailments were treated in the private sector, although the public sector remains important in the case of the lowest per capita expenditure group for hospitalisation (National Sample Survey Office 2016). However, the data shows an increase in utilisation of public health facilities between the various NSSO rounds. The increase is sharper in rural areas than in urban areas (Table 1.4). This pattern is visible in states like Assam, Odisha, Jharkhand, Madhya Pradesh, Tamil Nadu, Uttar Pradesh, Punjab and Kerala. However, states which witnessed

Table 1.4 Percentage of outpatient treatment from public health facilities in select states, India, 1995–96 to 2014 States

Share of treatment from public health facilities Rural

Urban

1995–96

2004

2014

1995–96

2004

2014

Andhra Pradesh

22

21

16

19

20

12

Assam

29

27

84

22

24

44

Bihar

13

5

14

33

11

12

Chhattisgarh

–

15

31

–

20

16

Gujarat

25

21

24

22

18

15

Haryana

13

12

11

11

20

8

Jharkhand

–

13

32

–

24

15

Karnataka

26

34

26

17

16

14

Kerala

28

37

36

28

22

31

Madhya Pradesh

23

23

29

19

23

24

Maharashtra

16

16

20

17

11

15

Odisha

38

51

76

34

54

54

Punjab

7

16

17

6

18

23

Rajasthan

36

44

44

41

53

29

Tamil Nadu

25

29

42

28

22

29

Telangana

–

–

19

–

–

9

Uttar Pradesh

8

10

15

9

13

16

West Bengal

15

19

23

19

20

15

All-India

19

22

28

20

19

21

Source National Sample Survey Office 2016, 71st Round, Morbidity, Health in India, January–June 2014, New Delhi: Government of India

30

1 Mental Healthcare Services in the Community …

a decline in the utilisation of public health facilities in rural and urban areas were Andhra Pradesh and Gujarat, and in urban areas were Bihar, Chhattisgarh, Karnataka, Maharashtra, Rajasthan and West Bengal. States which had the highest utilisation of public health facilities for outpatient treatment were Assam (84% in rural and 44% in urban), Odisha (76% in rural and 54% in urban), Rajasthan (44% in rural and 29% in urban), Tamil Nadu (42% in rural and 29% in urban) and Kerala (36% in rural and 31% in urban), suggesting that the scope for delivering universal mental healthcare through free-of-cost or highly subsidised mechanisms in these states. Further, population coverage by health expenditure support was quite low, as 85.9% in rural and 82% in urban areas were not covered by health expenditure support reflecting the burden of out-of-pocket expenditure (National Sample Survey Office 2016). Examination of the utilisation data by source of treatment for psychiatric disorders will show us how ready the country is for implementation of the MHA 2017, which mandates the right to publicly provided mental healthcare. The earlier discussion on human resources had shown major shortages across all categories of mental health professionals as well as of PHC staff in many states. The data clearly shows that in India, nearly three-fourth of both hospitalised and outpatient treatment for psychiatric disorders takes place in private health facilities, suggesting that only a major investment in health can pave the way to realising the justiciable rights under the MHA 2017 (Table 1.5). For hospitalised treatment of psychiatric disorders, the public health sector played a major role in states like Assam (100%), Chhattisgarh (84.1%) and Jammu & Kashmir (61.7%). Between 30 and 40% of hospitalised treatment took place in public health facilities in Madhya Pradesh, Bihar, Goa, Sikkim, Rajasthan and Kerala. For outpatient treatment of psychiatric disorders, the public health sector accounted for a larger share in Assam (98.9%), Jammu & Kashmir (66.5%), Sikkim (65.4%) and Odisha (56.5%). In states like Chhattisgarh, Himachal Pradesh, Madhya Pradesh, Tamil Nadu and Kerala, between 30 and 50% of psychiatric treatment took place in government health facilities. The average total expenditure on outpatient treatment per person for psychiatric disorders was highest in Meghalaya, Jammu & Kashmir and Tripura (Table 1.6). The expenditure was lower than the national average in Assam, Jharkhand, Gujarat, Himachal Pradesh, Goa, West Bengal, Andhra Pradesh, Karnataka, Kerala and Tamil Nadu. In the case of hospitalised treatment for psychiatric disorders, the average total medical expenditure per case was highest in Haryana, Bihar, Goa and Meghalaya. It was lower than the national average in Jammu & Kashmir, Himachal Pradesh, Uttarakhand, Arunachal Pradesh, Nagaland, Manipur, Assam, West Bengal, Jharkhand, Odisha, Chhattisgarh and all the South Indian states.

1.7 Can Public Health Infrastructure and Human Resources in Health in India … Table 1.5 Percentage of outpatient and hospitalised treatment by source of treatment for psychiatric disorders in India, statewise, 2014

31

States

Hospitalised treatment

Outpatient treatment

Government

Private

Government

Private

Haryana

0.0

100.0

3.3

96.7

Himachal Pradesh

0.0

100.0

45.4

54.6

Jammu & Kashmir

61.7

38.3

66.5

33.5

Punjab

19.5

80.5

8.5

91.5

Rajasthan

34.8

65.2

28.8

71.2

Uttarakhand

–

–

2.2

97.8

Chhattisgarh

84.1

15.9

49.4

50.6

Madhya Pradesh

44.3

55.7

36.4

63.6

Uttar Pradesh

25.1

74.9

17.8

82.2

Bihar

33.8

66.2

7.0

93.0

Jharkhand

11.4

88.6

5.0

95.0

Odisha

71.9

28.1

56.5

43.5

West Bengal

5.2

94.8

15.9

84.1

Arunachal Pradesh

–

–

0.0

100.0

Assam

100.0

0.0

98.9

1.1

Manipur

32.8

67.2

0.0

100.0

Meghalaya

0.0

100.0

–

–

Mizoram

24.4

75.6

0.7

99.3

Nagaland

–

–

–

–

Sikkim

35.7

64.3

65.4

34.6

Tripura

0.0

100.0

0.0

100.0

Goa

36.7

63.3

18.6

81.4

Gujarat

21.5

78.5

5.4

94.6

Maharashtra

15.7

84.3

14.7

85.3

Andhra Pradesh

13.1

86.9

15.5

84.5

Telangana

72.0

28.0

3.4

96.6

Karnataka

13.2

86.8

21.0

79.0

Kerala

31.9

68.1

30.6

69.4

Tamil Nadu

27.8

72.2

32.4

67.6

All-India

24.9

75.1

23.4

76.6

Source Calculated from unit level data of National Sample Survey Office 2016, 71st Round, Morbidity, Health in India, January–June 2014. New Delhi: Government of India

32

1 Mental Healthcare Services in the Community …

Table 1.6 Average total medical expenditure for outpatient treatment (Rs.) per ailing person for psychiatric disorders, average total medical expenditure (Rs.) for treatment per hospitalisation case for psychiatric disorders during the stay at hospital (as inpatient) over last 365 days in India, statewise, 2014 (Rs.) States

Average total medical expenditure for psychiatric treatment (Rs.) per ailing person (outpatient care)

Average total medical expenditure (Rs.) for psychiatric treatment per hospitalisation case

Jammu & Kashmir

2380.33

Himachal Pradesh

775.19

6578.31

Punjab

991.06

19312.89

Uttarakhand

1541.88

6274.89

Haryana

1052.81

33986.24

Rajasthan

1405.09

18282.74

Uttar Pradesh

1637.05

20135.27

Bihar

794.33

32910.52

Sikkim

1569.71

17597.32

Arunachal Pradesh

2075.00

5050.58

Nagaland

–

4790.21

Manipur

1433.33

9475.23

Mizoram

612.86

21844.63

Tripura

2360.00

18465.95

Meghalaya

3500.00

25188.51

6882.18

Assam

524.82

11164.42

West Bengal

816.86

14838.79

Jharkhand

419.29

10212.10

Orissa

929.01

6573.84

Chhattisgarh

1486.54

11327.65

Madhya Pradesh

1754.36

15192.57

Gujarat

562.08

15824.81

Maharashtra

1563.80

21095.90

Andhra Pradesh

584.79

14842.41

Karnataka

767.90

11632.28

Goa

723.38

28398.58

Kerala

604.86

13579.92

Tamil Nadu

729.25

13187.85

Telangana

1094.68

10196.39

All-India

892.98

15768.50

Source Calculated from unit level data of National Sample Survey Office 2016, 71st Round, Morbidity, Health in India, January–June 2014. New Delhi: Government of India

1.8 Scope and Methodology

33

1.8 Scope and Methodology Documenting five select NGOs, we aim to examine different approaches in provision of mental health services in the community, which would be useful to other organisations planning to start CMHPs. In doing so, we look at the differences in approaches adopted by NGOs in relation to the concept as espoused by WHO and DMHP. The five CMHPs were selected based on factors like comprehensive nature of their services, hitherto undocumented in the mainstream literature and were currently functional. Some of the organisations have several projects, but we have chosen to document only their CMHP. The following five CMHPs were selected for the documentation: 1. 2. 3. 4. 5.

Janamanas, Anjali; Community Mental Health programme, ASHWINI; Community Mental Health Programme, Antara; Rural Mental Health Programme, The Banyan; Mental Health Action Trust.

The following questions are explored in this book: • • • • • •

How NGOs identify and respond to local priorities? How NGOs deal with local belief systems? Strategies to develop community capacity? Who benefits from these services? Under what conditions is community involvement activated in the programme? How do NGOs monitor their programmes and are they accountable to the community? • What are the challenges faced by NGOs? Each of the CMHPs is documented as separate chapters. The study involved site visits of approximately 1-week duration to the selected organisations to understand the type of services offered by their programmes using a combination of primary and secondary data collection. The site visit was conducted between October and December 2012. Primary data was collected in this study using a qualitative case study approach, which included interviews with key functionaries of the NGO, staff, community workers, users and community members (Table 1.7). Informed consent was obtained from all individuals who were interviewed. Secondary data constitute information from project database, previous studies, impact evaluation, baseline survey reports and annual reports. An understanding of service users—their socio-demographic and clinical features (diagnostic category) were obtained from the NGO’s database. Two NGOs, namely The Banyan and ASHWINI shared their client database. A structured schedule was administered with the project staff based on the interview schedule used by Murthy (2012). While information related to programme origin, area of operation, list of components, staff structure, cost, source of funding and objectives was obtained using a structured interview schedule, information on the reason for commencing CMHP, underlying philosophy of the programme, changes in programme functioning, discontinuation of some components, processes involved in each component, challenges in service

34

1 Mental Healthcare Services in the Community …

Table 1.7 Details of interviews conducted at the five NGO-run CMHPs Interviews

Janamanas, Anjali

ASHWINI

Antara

RMHP, The Banyan

MHAT

Total

Clients

5

2

8

5

10

30

Caregivers

2

1

8

8

4

23

Group discussion

1

1

1

Staff

14

3

11

12

10

Community 3 members

1

2

4

11

58

Volunteers

–

–

–

2

13

15

Other

–

–

2

–

–

2

Home visit

5

7

1

4

8

25

Total

30

22

34

34

46

166

10

Source Site visit between October and December 2012

delivery, etc., were documented as field notes in a diary. With the NGO, clients, caregivers and community members consent, we have photographed some of the activities like support group meeting in progress, community workers undertaking home visits, vocational training activities, etc. In some cases, the NGOs have shared photographs with us. Informed consent was obtained from all the staff and clients of the five organisations who were interviewed. The form for the informed consent was in the language understood by the signatory or its content was explained to the signatory in the language understood by him or her. CMHPs had the right to withdraw from the study at any point. The data shared by the CMHPs was anonymised by removing the client’s identities and the data is password protected and not shared with anyone other than the research team of Mental Health Initiative and Karuna Trust. The selected NGOs are located in Tamil Nadu (2), Kerala (1) and West Bengal (2). Both Tamil Nadu and Kerala are well known for achievements in health and education and are often commended in the literature for their social welfare orientation (Drèze and Sen 2013). Drèze and Sen (2013) state that the achievements of Kerala and Tamil Nadu in education, health and other social domains have been nurtured by universalistic social policies. Although West Bengal carried out far-reaching agrarian reforms and developed strong local self-government institutions, it has been noted that there was ‘a near total absence of policy initiatives on other factors that influence well being’ (Sengupta and Gazdar 1996: 194). Table 1.8 demonstrates the lead enjoyed by Kerala and Tamil Nadu in poverty reduction and health. Kerala (7.1%) and Tamil Nadu (11%) have a much lower proportion of the population who are below the poverty line (Tendulkar line) when compared to West Bengal (20%). On the multidimensional poverty index, a much lower proportion in Kerala (1.1%) and Tamil Nadu (7.4%) than in West Bengal (20%) were multidimensionally poor. Tamil Nadu and Kerala are among the most urbanised states in India. On the health front,

1.8 Scope and Methodology

35

Table 1.8 Socio-demographic indicators in Tamil Nadu, Kerala and West Bengal Indicators

Tamil Nadu

Kerala

West Bengal

All-India

Head count ratio of poor in 2011–12 (as %)

11

7.1

20

21.9

Proportion of multi dimensionally poor population, 2015–16 (as %)

7.4

1.1

26

55.4

Human development index rank, 2011

6

1

9

NA

Effective literacy, 2011 (as %)

80.1

94.0

76.3

73.0

Effective female literacy, 2011 (as %)

73.4

92.1

70.5

64.6

Worker population ratio, 2011 (as %)

45.6

34.8

38.1

39.8

Degree of urbanisation, 2011 (as %)

48.4

47.7

31.9

31.1

Infant mortality rate, 2016 (per 1000 live births)

17

10

25

34

Maternal mortality ratio, 2011–13 (per 1 lakh live births)

79

61

113

167

Full ANC coverage, 2015–16 (as %)

45.0

61.2

21.8

21.0

Full immunisation of children age 12–23 months, 2015–16 (as %)

69.7

82.1

84.4

62.0

Institutional birth, 2015–16 (as %)

99.0

99.9

75.2

78.9

Proportion of under five child stunting, 2015–16 (as %)

27.1

19.7

32.5

38.4

Percentage of ever-married women who have experienced spousal violence 2015–16

40.6

14.3

32.8

28.8

Source Planning Commission 2014, Report of the Expert Group to Review the Methodology for Measurement of Poverty. New Delhi: Government of India; Alkire, S., Oldiges, C. and Kanagaratnam, U. 2018, Multidimensional poverty reduction in India 2005/6–2015/16: still a long way to go but the poorest are catching up. OPHI Research in Progress 54a, University of Oxford; Suryanarayana, M.H., Agrawal, A., and Prabhu, K.S., 2011, Inequality-adjusted Human Development Index for India’s States. New Delhi: UNDP; Census of India 2011; Sample Registration System 2017, “SRS Bulletin”. Vol. 51, No. 1, New Delhi: Government of India; Maternal Mortality Ratio Bulletin 2011–13, downloaded on 23/10/2017; International Institute for Population Sciences and ICF (2017), National Family Health Survey (NFHS 4) 2015–16: India; Mumbai: International Institute for Population Sciences

West Bengal lags behind Kerala and Tamil Nadu on Infant Mortality Rate (IMR), Maternal Mortality Ratio (MMR), antenatal care coverage, institutional delivery and under-five child stunting. West Bengal shows comparable performance on effective female literacy with Tamil Nadu. A larger proportion of women in Tamil Nadu (40.6%) and West Bengal (32.8%) reported experiencing domestic violence. Clearly, the challenges in implementing a mental health programme are going to be much higher in West Bengal in the context of higher poverty and poor maternal and child health outcomes when compared to Kerala and Tamil Nadu.

36

1 Mental Healthcare Services in the Community …

Acknowledgements The book is a revised version of a Navajbai Ratan Tata Trust funded documentation completed in 2014. The report was entitled ‘Documentation of five Community mental Health programmes in India: Janamanas (Anjali), Antara, ASHWINI, Rural Mental Health Programme (The Banyan) and Mental Health Action Trust’. We acknowledge that we have referred to an interview schedule shared by Dr Pratima Murthy, NIMHANS to collect information from NGOs.

References Basic Needs. (2009). Community mental health practice: Seven essential features for scaling up in low and middle income countries. Bengaluru: Basic Needs. Bhat, R. (2012). Mental health in India: Analysis of the trends in budget and expenditure. New Delhi: WOne. Central Bureau of Health Intelligence. (2018). National Health Profile 2018. New Delhi: Ministry of Health and Family Welfare. Chandrasekhar, C. R., Isaac, M. K., Kapur, R. L., & Parthasarathy, R. (1981). Management of priority mental disorders in the community. Indian Journal of Psychiatry, 23, 174–178. Communities and Local Government. (2006). The community development challenge. West Yorkshire: Communities and Local Government publications. Cochrane, A., & Newman, J. (2009). Community and policymaking. In G. Mooney & S. Neal (Eds.), Community: Welfare, crime and society (pp. 35–64). Maidenhead: Open University Press. Drèze, J., & Sen, A. (2013). An uncertain glory: India and its contradictions. London: Penguin. Gilchrist, A. (2004) Community cohesion and community development: Bridges or barricades? London: Community Development Foundation. Government of India. (2009). National Health Accounts-India (2004–05)-with provisional estimates from 2005–06 to 2008–09). New Delhi: Ministry of Health and Family Welfare. Gururaj, G., Girish, N., & Isaac, M. K. (2005). Mental, neurological and substance abuse disorders: Strategies towards a systems approach. In National Commission on Macroeconomics and Health, Burden of Disease in India. New Delhi: Ministry of Health and Family Welfare. Indian Council for Market Research. (2009). Evaluation of District Mental Health Programme. New Delhi: ICMR. International Institute for Population Sciences and ICF. (2017). National Family Health Survey (NFHS 4) 2015–16: India. Mumbai: IIPS. Isaac, M. K., Kapur, R. L., Chandrasekhar, C. R., Kapur, M., & Parthasarathy, R. (1982). Mental health delivery through rural primary care-development and evaluation of a training programme. Indian Journal of Psychiatry, 24(2), 131–138. Jacob, K. S. (2011). Repackaging mental health programmes in low and middle-income countries. Indian Journal of Psychiatry, 53(3), 195–198. Jodhka, S. (2001). Introduction. In S. Jodhka (Ed.), Community and identities: Contemporary discourses on culture and politics in India (pp. 13–31). New Delhi: Sage. Jain, S., & Jadhav, S. (2008). A cultural critique of community psychiatry in India. Psychiatric Health Care, 38(3), 561–584. Kapur, R. L. (2004). The story of community mental health in India. In S. P. Agarwal, D. S. Goel, R. L. Ichhpujani, R. N. Salhan, & S. Shrivastava (Eds.), Mental health: An Indian perspective 1946–2003 (pp. 92–100). New Delhi: Government of India. Lahariya, C. (2018). Strengthen mental health services for universal health coverage in India. Journal of Postgraduate Medicine, 64(1), 7–9. Mansuri, G., & Rao, V. (2004). Community-based and -driven development: A critical review. World Bank Policy Research Working Paper 3209, February 2004. Mansuri, G., & Rao, V. (2013). Localizing development: Does participation work? Washington, DC: World Bank. https://doi.org/10.1596/978-0-8213-8256-1. License: Creative Commons Attribution CC BY 3.0.

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Ministry of Health and Family Welfare. (2014). New pathways, new hope: National Mental Health Policy of India. New Delhi: Government of India. Ministry of Health and Family Welfare. (2017). Rural Health Statistics 2016–17. New Delhi: Government of India. Mosse, D. (2005). Cultivating development: An ethnography of aid policy and practice. London: Pluto Press. Murthy, P. (2012). Female injecting drug users and female sex partners of men who inject drugs—assessing care needs and developing responsive services. Regional Office for South Asia: United Nations Office on Drugs and Crime. National Crime Records Bureau. (2016). Accidental deaths and suicides in India 2015. New Delhi: Government of India. National Institute of Mental Health and Neuro Sciences. (1986). A decade of rural mental health centre, Sakalawara. Bengaluru: NIMHANS. National Institute of Mental Health and Neuro Sciences. (2016a). National Mental Health Survey of India 2015–16: Mental Health Systems. Bengaluru: NIMHANS. National Institute of Mental Health and Neuro Sciences. (2016b). National Mental Health Survey of India, 2015–16: Prevalence, patterns and outcomes. Bengaluru: NIMHANS. National Sample Survey Office. (2016). Health in India (NSSO 71st Round, January–June 2014. Report No 574 (71/25.0). New Delhi: NSSO. National Health Systems Resource Centre. (2017). National Health Accounts Estimates for India (2014–15). New Delhi: Ministry of Health and Family Welfare. Qadeer, I. (1999). The World Development Report 1993: The brave new world of primary health care. In M. Rao (Ed.), Disinvesting in health: The World Bank’s prescriptions for health (pp. 49–64). New Delhi: Sage. Reddy, M. V., & Chandrashekar, C. R. (1998). Prevalence of mental and behavioural disorders in India: A meta-analysis. Indian Journal of Psychiatry, 40(2), 149–157. Sarin, A., & Jain, S. (2013). The 300 Ramayanas and the District Mental Health Programme. Economic and Political Weekly, 48(25), 77–81. Sengupta, S., & Gazdar, H. (1996). Agrarian politics and rural development in West Bengal. In J. Drèze & A. Sen (Eds.), Indian development: Selected regional perspectives (pp. 129–204). New Delhi: OUP. Shidaye, R., & Patel, V. (2010). Association of socio-economic, gender and health factors with common mental disorders: A population-based study of 5703 married rural women in India. International Journal of Epidemiology, 39, 1510–1521. The Gazette of India. (2017). The Mental Healthcare Act 2017. New Delhi: Ministry of Law and Justice. Thornicroft, G., Alem, A., Santos, R. A. D., Barley, E., Drake, R. E., Gregorio, G., et al. (2010). WPA guidance on steps, obstacles and mistakes to avoid in the implementation of community mental health care. World Psychiatry, 9, 67–77. Thornicroft, G., & Tansella, M. (2003). What are the arguments for community-based mental health care? Copenhagen: WHO. Wig, N. N., Murthy, R. S., & Harding, T. W. (1981). A model for rural psychiatric services-Raipur Rani experience. Indian Journal of Psychiatry, 23(4), 275–290. World Health Organisation. (2001). The World health report 2001, Mental health: New understanding, new hope. Geneva: WHO. World Health Organisation. (2007). Developing community mental health services. Report of the Regional Workshop, Thailand, 2006. Geneva: WHO. World Health Organisation. (2008a). Mental health gap action programme: Scaling up care for mental, neurological and substance use disorders. Geneva: WHO. World Health Organisation. (2008b). Integrating mental health into primary care: A global perspective. Geneva: WHO. World Health Organisation. (2008c). The global burden of disease: 2004 update. Geneva: WHO. World Health Organisation. (2018a). World mental health atlas 2017. Geneva: WHO. World Health Organisation. (2018b). World mental health atlas 2017: Member State Profile—India. Geneva: WHO.

Chapter 2

How Janamanas Partners with Government and Women Self-help Groups to Embed Mental Health and Resilience in the Community

Abstract The intent to focus on healing systems for persons with mental illness in the community crystallised into Janamanas in 2007—a community-based mental health programme led by women from the community in partnership with the Government of West Bengal through municipalities and local self-government institutions (panchayats) in the state. In response to interpersonal issues and gender-based violence in the family, the programme first trained women members of self-help group on mental health, gender-related issues and counselling, following which mental health kiosks to deliver mental health services were set up in partnership with the government in areas with high socio-economic deprivation. The programme involved stakeholders in the community like schools, local representatives, self-help groups, local clubs and other NGOs in identification, conduct of awareness programmes and referral for employment assistance and legal aid. Keywords Positive mental health · Municipalities · Civil society · Self-help group · Mental health kiosk · Non-judgemental space In 2000, Anjali Mental Health Rights Organisation initiated work with a section of society invisible from public view—institutionalised persons with mental health issues in three government mental hospitals in West Bengal, namely, Pavlov Mental Hospital, Lumbini Park Mental Hospital and Bahrampur Mental Hospital. Anjali’s work in these hospitals involves complete rehabilitation of persons with chronic mental health conditions through a comprehensive package of healthcare and therapies offered in conjunction with services provided by the hospitals in a rights-based approach, which involves participation of persons with mental health issues. The rehabilitation package comprised psychotherapy, occupational therapy, creative therapy, relaxation therapy, economic empowerment and organising shelter for clients who need it. The medical officer in charge of Government Mental Health Care Centres refers clients for rehabilitation to Anjali. After consultation with doctors and paramedical staff on the client’s status, Anjali draws up a client-specific rehabilitation package. Parallel to the client’s rehabilitation, Anjali initiates contact with the family to assess attitude towards the client, their financial situation and then involves them as well as important local influencers to facilitate reintegration of the client to the family. Once the client is ready for reintegration, the non-government organisation (NGO) © Springer Nature Singapore Pte Ltd. 2019 G. Balagopal and A. R. M. Kapanee, Mental Health Care Services in Community Settings, https://doi.org/10.1007/978-981-13-9101-9_2

39

40

2 How Janamanas Partners with Government and Women …

facilitates the process of reunion with the family, job placement and referral for free treatment in the community. This ensured that persons with mental health issues who otherwise might have languished for the rest of their lives within the boundaries of mental hospitals were reintegrated with their family. Key strategies of Anjali are to humanise government health institutions, enable self-determination of persons with mental health issues in government mental hospitals, and shift the paradigm of care from institutions to the community and partner with citizens to become new change agents in the field of mental health. The intent to focus on healing systems for persons with mental illness in the community crystallised into Janamanas in 2007—a community-based mental health programme led by women from the community in partnership with the government in Rajarhat–Gopalpur, Khardah, Kamarhati and Koch Bihar Municipalities and Bishnupur Panchayat in West Bengal.1 Municipalities with a high proportion of slum population were selected for implementing the programme. Janamanas has been funded by the Innovative Challenge Fund and The Hans Foundation. Since 2011, Janamanas has been taken over by Rajarhat— Gopalpur Municipality and implementation has begun at Koch Bihar Municipality in 2013. Public policy has enabled formation of a network of women self-help groups (SHGs) under the Swarna Jayanti Shahari Rozgar Yojana (SJSRY), an urban poverty alleviation scheme of the Government of India implemented by urban local bodies (ULBs). Anjali invested in developing the organisational and leadership capacity of a network of women self-help groups (SHGs) thus tapping social capital available in the community to create awareness on mental health, identify, counsel and refer people with mental health issues in the community, with a focus on promotional mental health. Janamanas promotes well-being, resilience and problem-solving skills in the community, destigmatizes and normalises mental illness and caters to people with psychosocial as well as other disabilities. The launch of Janamanas programme in the community comprised strategic planning, goal setting and fundraising; recruitment and training of team; rapid assessment to identify municipal wards; advocacy with local government and a baseline assessment to identify factors at different levels that contribute to poor mental health. The preparation of programme rollout consists of undertaking an audience analysis and curriculum development. This is followed by training of participants. After a festival is held to showcase learning of the training, community-level staff are selected. After gaining the required permissions from the local government, the kiosks are set up and the staff are provided training in counselling. Once the kiosks functioning stabilises, the programme is handed over to the municipality for implementation. Anjali collaborated with the government in their work in hospitals and communities, as they believe that it is sustainable and does not create parallel systems of healthcare. They recognise that state action in healthcare is critical for marginalised sections of the population.

1 Janamanas

programme was halted in Kamarhati Municipality in 2011 due to issues with the Municipality and in Khardah Municipality.

2.1 Civil Society as Community and Community Ecosystems for Mental …

41

2.1 Civil Society as Community and Community Ecosystems for Mental Healthcare and Well-Being Anjali perceives the community not just as a closed collectivity of people who are bound by blood, caste or history, rather it is viewed as a territory with different people and institutions not all of who are bound by kinship, caste or religion. For Janamanas, the community comprises a collective of resource-poor women organised into SHGs under a government scheme who are the central human resource of the programme, the municipality, mental health kiosks, schools and community clubs, trainees of the programme, the location, namely, Rajarhat–Gopalpur, Koch Bihar and Bishnupur and the inhabitants who by and large belong to low socio-economic status groups, partner NGOs, users and caregivers. As the programme is located in slum areas, it caters to population with multiple deprivations with specific emphasis on women who are the most vulnerable in terms of their access to social and material resources. The components of Janamanas is presented in Appendix Table 2.8. According to the Founder, Anjali, ‘Community could be the entire civil society. There cannot be one community in a community mental health programme. In the context of Janamanas, it is led by women from the civil society—for, by and with the people, particularly women. The Kiosk Operators, the Municipality are not just the stakeholders, but also the community. The people who inhabit the places where we implement the programme are a community with layers of class, caste, gender and sexuality, if we were look at it as a whole’. The vision of Anjali is: • ‘A world where the right to positive mental health is secured for all’. The mission of Anjali is: • • • •

‘Make mental health institutions and systems inclusive’. ‘Build community ecosystems for mental healthcare and well-being’. ‘Secure progressive mental health laws, policies, and practice’. ‘End stigma, violation, and discrimination that is associated with mental health’.

The objectives of Janamanas are: • Deinstitutionalise mental health service by involving community in mental healthcare and well-being. • Integrate mental healthcare with District Development Plan of Government of West Bengal. • Provide a non-threatening and non-judgemental space to the community. The future goals for Janamanas are: • • • •

Scaling deeper by starting more mental health kiosks in the existing municipalities. Scaling up in districts in northern districts of West Bengal. Customise information for different mental health problems. Introduce a medical component.

42

2 How Janamanas Partners with Government and Women …

2.2 Lack of Publicly Provided Comprehensive Mental Healthcare and Deprivations in the Community Anjali’s work in government mental hospitals was the genesis of the community mental health programme called Janamanas. Persons with mental health issues from government mental hospitals who were reintegrated with their families found that affordable mental health services were far and few between in their communities, which presented problems in follow-up care. In addition, persons with mental health issues and their families experienced stigma due to poor awareness about mental illness in the community. The staff from Anjali visited Primary Health Centres (PHCs) in the community and observed that they were not equipped to deal with comprehensive mental health services. Although the doctors were well intentioned, case history was not done with the adequate depth that was required for mental health issues, and the focus was on dispensing medicines. Anjali wanted something more comprehensive in the community. They met members of a few self-help groups (SHGs) in the community and organised a focus group discussion (FGD), which revealed that women needed a non-judgemental space to articulate their concerns related to alcoholism of spouse, intimate partner violence, scholastic performance of children, adolescent relationship issues, shame about their body, sexuality, failed relationships, poor dietary intake of women, exploitation of women’s labour in the household, etc. While SHGs referred women affected by intimate partner violence to organisations providing legal aid, they did not have access to counselling services. Anjali realised that there was need in the community not just for clinical services, but also for mental healthcare which had promotional aspects. As with Anjali’s work in government mental hospitals, the community-based work was also envisaged as collaboration with the government. It was clear that these services should reach out to the most underserved areas in municipalities which had a relatively high slum2 population. Hence Rajarhat Gopalpur, Khardah and Kamarhati Municipalities which come under Kolkata Metropolitan Area were selected for implementing Janamanas and a Memorandum of Understanding (MoU) was signed with the respective Urban Local Bodies (ULBs). Prior to rolling out the programme, Anjali conducted a baseline study in the community and hired an organisation, to undertake the study (Baseline 2008). The programme in Bishnupur Panchayat was launched in 2012. According to the Census of India, 2011, the population in North 24 Parganas district is 10,009,781, in South 24 Parganas district is 8,161,961 and 2,819,086 in Koch Bihar. The population size of the three areas in which the programme is being implemented is as follows: 1. Rajarhat Gopalpur Municipality in North 24 Parganas district—402,844. 2 According to the Government of India, Section 3 of the Slum Areas Act (Improvement and Clear-

ance Act), 1956, slums are defined as areas where buildings are in any respect unfit for human habitation; are by reason of dilapidation, overcrowding, faulty arrangement and design of such buildings, narrowness or faulty arrangement of streets, lack of ventilation, light, sanitation, facilities or any combination of these factors which are detrimental to safety, health and morals (Registrar General of India, 2005, Slum Population Vol. 1, Census of India 2001, New Delhi: Government of India).

2.2 Lack of Publicly Provided Comprehensive Mental … West Bengal UƩar Dinajpur South 24 Parganas Purba Medinipur Prurliya Paschim Medinipur North 24 Parganas Nadia Murshidabad Maldah Kolkata Koch Bihar Jalpaiguri Hugli Haora Darjiling Dakshin Dinajur Birbum Barddhaman Bankura 0.0%

43

30.2% 48.0% 27.2% 37.7% 38.8% 29.5% 28.1% 41.6% 43.3% 30.3% 29.7% 45.0% 20.6% 32.8% 19.6% 21.6% 44.6% 31.8% 30.6% 10.0%

20.0%

30.0%

39.7% 40.0%

50.0%

60.0%

Fig. 2.1 Proportion of households that are located in slums in urban areas of West Bengal, districtwise, 2011 (as %). Source Socioeconomic and Caste Census (2011). Slum population (Urban). New Delhi: Ministry of Rural Development (https://secc.gov.in/districtSlumPopulationUrban)

2. Koch Bihar Municipality in Koch Bihar district—77,935. 3. Bishnupur Panchayat in South 24 Parganas district—30,000 (approximate). While Rajarhat Gopalpur Municipality is located in North 24 Parganas district, Koch Bihar Municipality is in Koch Bihar district and Bishnupur is located in South 24 Parganas district. Data from the District Census Handbook shows that there was one allopathic 200-bed public hospital with two doctors in position, two alternative medicine hospitals with 250 beds and seven dispensaries, one family welfare centre and one mobile health clinic in Rajarhat Gopalpur (Census of India 2011a). In Bishnupur there was one 60-bed hospital with 12 doctors in position, 24 paramedical staff in position, 12 dispensaries with five doctors and three family welfare centres (Census of India 2011b). In Koch Bihar Municipality, there was one 400-bed hospital and no dispensaries or even charitable hospitals (Census of India 2011c). Figure 2.1 shows the proportion of households that were located in slums in urban areas of West Bengal. In West Bengal, 30.2% of households were located in slums. South 24 Parganas (27.2%) and North 24 Parganas (28.1%) had a similar proportion of households living in slums. In Koch Bihar, an exceedingly high proportion of households were located in slums (45%). With a relatively high share of households located in slums, all districts qualify for programme implementation. In Table 2.1, we examine evidence on an indicator of deprivation, namely disability from Socio-Economic and Caste Census (SECC), across all districts in rural areas of West Bengal to understand where South 24 Parganas, North 24 Parganas and Koch Bihar stand. The information on proportion of households that have a member with a disabled member and no able-bodied adult show that North 24 Parganas have a higher share than the state average, while South 24 Parganas has a lower share. In addition

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2 How Janamanas Partners with Government and Women …

Table 2.1 Percentage of households with deprivation criteria in rural areas of West Bengal, districtwise, 2011 District

Share of households with disabled member and no able-bodied adult member

Share of households with exactly three deprivations

Darjiling

0.58

9.1

Jalpaiguri

0.52

15.4

Koch Bihar

0.43

10.4

Uttar Dinajpur

0.18

Dakshin Dinajpur

Scheduled caste/Scheduled tribe households

Landless households deriving major part of income from manual casual labour

Share of households with no deprivations

36.8

34.3

12.1

52.8

47.9

7.0

45.2

42.2

10.9

12.6

29.3

42.7

11.0

0.32

12.4

44.2

42.7

16.4

Maldah

0.27

16.3

25.4

51.1

9.3

Murshidabad

0.52

12.9

12.2

53.6

11.6

Birbhum

0.62

19.2

35.3

56.2

11.7

Barddhaman

0.43

15.7

36.6

49.4

12.9

Nadia

0.45

13.3

28.4

51.0

11.0

North 24 Parganas

0.50

12.8

27.3

49.5

11.6

Hugli

0.29

10.8

31.8

40.6

16.0

Bankura

0.60

16.0

42.3

39.6

16.7

Puruliya

0.45

13.6

35.7

27.9

16.5

Haora

0.24

6.6

19.2

41.5

17.9

South Twenty-Four Parganas

0.39

13.2

30.5

44.7

12.6

Paschim Medinipur

0.67

10.6

32.7

30.3

22.3

Purba Medinipur

0.82

6.9

12.9

35.0

22.0

West Bengal

0.47

12.8

30.2

44.3

13.9

Source Socioeconomic and Caste Census (2011): Deprived-All Households (Rural). New Delhi: Ministry of Rural Development (https://secc.gov.in/districtCategorywiseDeprivationReport)

2.2 Lack of Publicly Provided Comprehensive Mental …

45

to disability, if we look at the data on households with multiple deprivations (at least three), it can be seen that South 24 Parganas has a higher share than the state average, while North 24 Parganas has a similar share to the state average (12.8%). In South 24 Parganas, 12.6% of households have three deprivations when compared to 12.8% in North 24 Parganas. Further, the data also shows that the proportion of households without any deprivation was quite low in West Bengal (13.9%). On this indicator, it is seen that North 24 Parganas, South 24 Parganas and Koch Bihar fare worse than the state average with less than 13% of households reporting no deprivations. It is only in Paschim Medinipur and Purva Medinipur that there were at least one-fifth of households without any deprivation. The areas selected for implementation of the programme have a sizeable number of SHGs and community clubs, which are important conduits for diffusing the message of Janamanas. Outreach camps and awareness programmes are held with the help of government schools and community clubs.

2.3 Interpersonal Relationship Conflicts, Intimate Partner Violence, Patriarchal Norms and Substance Use Problems in the Community The baseline study which was conducted with SHG members under the Swarna Jayanti Shahari Rozgar Yojana (SJSRY)3 in 20 wards in Khardah, 13 wards in Kamarhati and 13 wards in Rajarhat Gopalpur was completed in 6 months. This enabled Anjali to know the community and their mental health problems before implementing the programme. The exercise was carried out with SJSRY members, namely, 624 community-level volunteers known as Resident Community Volunteer (RCV) who constitute members of the Community Development Society (CDS), the apex body of RCVs. Resident Community Volunteers are residents of the slums and belong to below poverty line (BPL) families. Belonging to the geographical location in which the programme was going to be implemented, it was important to involve people who had a connectedness with the community. Each RCV has information about 15–25 households in her immediate neighbourhood, which helped in 3 The

three key objectives of the Swarna Jayanti Shahari Rozgar Yojana (SJSRY) are:

• Addressing urban poverty alleviation through gainful employment to the urban unemployed or underemployed poor. • Supporting skill development and training to enable the urban poor have access to employment opportunities provided by the market or undertake self-employment. • Empowering the community to tackle the issues of urban poverty through suitable self-managed community structures and capacity building programmes. The delivery of inputs under the Scheme shall be through the medium of urban local bodies (ULBs) and community structures. Thus, SJSRY calls for strengthening of these local bodies and community organisations to enable them to address the issues of employment and income generation faced by the urban poor.

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2 How Janamanas Partners with Government and Women …

collecting information about households on demographic details like household size, gender composition, number of children and elderly and occupational structure of head of the household. A large section of the population who worked was employed in the informal sector, which is characterised by low pay, job insecurity and lack of employment-related benefits. Nearly 33% of head of the household worked as casual labourers reflecting the precarious nature of work. The RCVs described the various contributory factors of mental illness for different sections in their community, i.e. children, adolescents, married adults and elderly recognising that the community is comprised of heterogeneous population. Mental health issues were attributed to personal characteristics like age, education, income, occupation, gender; influence of close social circle like family and friends, community-level characteristics like workplace, educational institution; and societal characteristics like culture and policies. All of these are the social determinants of mental health. In the case of children, factors contributing to mental health issues were related to family structure, relationship with parents, educational problems, poverty and violence. Among adolescents, the main reasons leading to mental health problems were related to relationships, sexuality, unemployment, substance use, etc. Married adults in the community faced marital discord, sexual problems, rigid patriarchal norms, poverty, etc. Among elderly persons, possible causes for mental health issues were loneliness, separation from children, property disputes, violence, fear of death, illness, etc. The community members also reported the prevalence of substance use (109 per 1000 households), schizophrenia (5 per 1000 households) and common mental disorders in their neighbourhood. The RCVs identified the following issues in the community: • Low level of awareness and secrecy about mental illness in the community. • Poor availability of mental health services in the community. In order to address these issues, they suggested the following strategies: • Community-level awareness programmes. • Skill training for impoverished families. • Community-level interventions in the case of substance use and intimate partner violence. • Encourage all women to be part of the SHG network. During interactions with the community in Koch Bihar, Anjali staff found that there was a high level of acceptance of and utilisation of faith healers for physical and mental health issues among the rural population and some segments of the urban population. This resulted in Anjali staff seeking out a faith healer to understand his experiences with treating those with mental illness. The faith healer was clear that he could not treat mental illness and could only reduce symptoms like agitation and hysteria. Despite this, people travelled nearly 25 km to seek his help, which underscored his popularity. Acceptance of faith healers could also be attributed to the limited availability of psychiatric services. The nearest publicly provided psychiatric outpatient services were 20 km away.

2.4 Evidence on Intimate Partner Violence in West Bengal

47

2.4 Evidence on Intimate Partner Violence in West Bengal According to a WHO report, an intimate partner or husband is the most common perpetrator of violence against women (Krug et al. 2002). In the Indian context, where women are economically dependent on their spouse or have no say on how to use money from their own earnings due to entrenched patriarchal beliefs, there is a higher likelihood of violence by their spouse. Such violence can take the form of physical assault like slapping, kicking, beating, burning, attacking with weapons; emotional violence like controlling wife’s behaviour, threats, humiliation, isolation from natal family, suspicions about wife’s fidelity; and sexual violence like forcing partners into intercourse against their consent. We had seen in Chap. 1 that the prevalence of intimate partner violence (including physical or sexual violence) was higher than the national average in West Bengal (36%). On certain aspects of women’s empowerment, West Bengal does well. For instance, 70.8% of women in West Bengal participated in decisions on their healthcare, making household purchases and visiting her family, when compared to the all India average of 63%. Also, 58.1% of women in West Bengal had access to money that they themselves could use, although only 43.5% of them had a bank account that they themselves could use. Various factors such as both partners’ background characteristics, relationship issues, gender norms in society, level of community tolerance to intimate partner violence and legal remedies available to citizens influence the prevalence of intimate partner violence, about which there is data from the National Family Health Survey. Table 2.2 shows that most types of violence, be it emotional, physical or a combination of these, showed an increase with women’s age. In the case of emotional violence, it peaked among women aged 40–49 years and physical violence at 30–39 years. Emotional violence was highest among women in the age group 25–29 and 40–49, two age groups which reflect reproductive changes like childbirth and menopause. After the age of 25, nearly one-third of women experienced physical violence, which is the period of childbirth and child-rearing. Sexual violence was highest among teenage women and 25–29 age group. Clearly, the young are in danger of sexual violence from their spouse. While no age group is free from violence, it shows a marked increase from the age of 25 years upwards, indicating the vulnerability of this demography. Further, the combination of all these types of abuse was prevalent among nearly 40% of women aged 30 years and above, suggesting severe stress that these age groups will face. Patriarchal norms are more entrenched in rural areas, with all types of violence being higher among women living in rural areas, with physical violence being more than 10 percentage points higher in rural than urban areas. Intimate partner violence is least when the wife is the same age as the husband and highest when the wife is more than 10 years younger than the spouse. This points to strengthening of patriarchal norms as the age gap between the spouses increase. Alcohol intake by husband, especially the practice of getting drunk frequently is associated with higher levels of

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2 How Janamanas Partners with Government and Women …

Table 2.2 Percentage of ever-married women age 15–49 who have ever experienced emotional, physical, or sexual violence committed by their husband, according to background characteristics of wife and husband, West Bengal, 2015–16 Background characteristics of respondent Age of wife

Emotional violence

Physical violence

Sexual violence

Physical or sexual violence

Emotional physical or sexual violence

15–19

9.6

16.8

10.0

17.6

20.9

20–24

10.7

26.1

5.7

27.9

30.4

25–29

13.7

31.5

10.6

33.2

35.6

30–39

13.4

35.0

7.3

36.8

38.8

40–49

14.6

34.0

9.2

34.3

36.7

Place of residence of wife

Rural

14.6

35.4

9.8

36.9

39.6

Urban

9.8

22.8

5.0

23.7

25.3

Spousal age difference

Wife is same age

7.8

16.1

6.3

16.1

23.4

Wife 1–4 years younger

10.9

31.6

6.8

32.8

35.2

Wife 5–9 years younger

12.2

28.0

6.8

29.2

31.0

Wife 10+ years younger

14.2

32.7

9.6

34.9

37.6

Number of marital control behaviours by husband

0

5.5

21.6

2.8

22.4

23.6

1–2

14.4

36.9

10.9

38.7

40.4

3–4

26.1

43.1

15.1

45.0

52.0

5–6

36.3

58.7

25.5

61.4

63.2

Husband’s alcohol consumption

Does not drink

9.6

23.4

5.6

24.5

26.9

Drinks/Never 26.3 gets drunk

32.5

1.0

33.5

39.6

Gets drunk sometimes

18.0

52.4

14.3

55.0

57.1

Gets drunk often

45.4

86.8

37.0

86.8

87.3

Source International Institute for Population Sciences and ICF (2017). National Family Health Survey (NFHS 4) 2015–16: West Bengal. Mumbai: IIPS

2.4 Evidence on Intimate Partner Violence in West Bengal

49

Table 2.3 Types of injuries reported by women due to different types of spousal violence, West Bengal, 2015–16 (as %) Type of spousal violence experienced

Cuts, bruises or aches

Severe burns

Eye injuries, sprains, dislocations, or minor burns

Deep wounds, broken bones, broken teeth, or any other serious injury

Any of these injuries

Experienced physical violence

29.8

0.4

10.9

8.1

34.5

Experienced sexual violence

34.0

0.5

16.8

15.0

38.3

Experienced physical or sexual violence

28.2

0.4

10.8

8.1

32.5

Experienced physical and sexual violence

43.0

0.6

20.8

17.6

48.7

Source International Institute for Population Sciences and ICF (2017). National Family Health Survey (NFHS 4) 2015–16: West Bengal. Mumbai: IIPS

all types of violence. Excessive alcohol intake and violence against spouse reveals the need for services and sensitization programmes to address women and men. Violence against women by their husband has the potential to cause physical and mental injuries. Table 2.3 shows that injuries to women were higher among those who reported sexual violence and a combination of sexual and physical violence. Injuries like cuts/bruises and eye injuries/minor burns were quite high among women who experience sexual violence. Shockingly, nearly one-third of assaulted women suffered some kind of injury as a result of the abuse. The attitude of women themselves to intimate partner violence is a telling reflection of social conditioning that normalises such violence. Nearly one-third of married women stated that men were justified in hitting their wife if she did not respect his family or if she argued with him. In this context, many women will not have a space to share their experience of violence or seek legal remedies. This downplaying of her trauma could potentially lead to mental distress and practices like self-harm. Many factors like lack of access to financial resources, traditional beliefs about sanctity of marriage, poor support from natal families, fear of approaching police, worry about children’s future might inhibit women from seeking help. Figure 2.2 reveals that majority of women (64.2%) who had experienced intimate partner violence had never sought help or told anyone and only 10.9% sought help to address the problem.

50 Fig. 2.2 Percentage distribution of women age 15–49 who have ever experienced physical or sexual violence by whether they have ever sought help, West Bengal, 2015–16. Source International Institute for Population Sciences and ICF (2017). National Family Health Survey (NFHS 4) 2015–16: West Bengal. Mumbai: IIPS

2 How Janamanas Partners with Government and Women …

24.9

10.9

64.2

Never sought help, never told anyone Never sought help but told someone Sought help

With cultural and economic barriers to seeking help, it is not surprising that majority of women who sought help did so from their husband’s family (61.9%), own family (34.7%) and neighbours (Fig. 2.3). Less than 10% of assaulted women sought help from lawyers or police. Clearly, all this points to the need for interventions in the community among all genders about understanding and doing away with violence against women.

2.5 Workshops with the Municipality to Overcome Resistance to the Programme Although utilisation of local networks to implement a community mental health programme is an important strategy, the extent to which the strategy succeeds is determined partly by group-related factors, partly by norms and crucially by relationship between groups and the government. Initially, the government functionaries were wary of non-governmental organisations’ (NGOs) ability to implement a programme. When Anjali received this feedback, they decided to adopt a consultative approach with the government and held a series of six workshops with municipal councillors, community organisers and other authorities to disseminate information about the programme. After the workshops, the municipality was conducive to the conduct of the programme. A community organiser who is involved in the SHG programme stated that initially when Anjali spoke to them about Janamanas, she did not understand the scope of the work (Bandhopadhyay and Chakraborty 2009). It was only after Anjali trained a group of women for Janamanas in Khardah Municipality, that she understood the importance of the work, with the trained women setting up

2.5 Workshops with the Municipality to Overcome Resistance …

Lawyer

51

9.3

Police

5.1

Religious leader

6.4

Neighbour

27.8

Friend

14.7

Husband's family

61.9

Own family

34.7 0

10

20

30

40

50

60

70

Fig. 2.3 Percentage of women age 15–49 among those who have sought help from any source, the source from which help was sought for physical and sexual violence, West Bengal, 2015–16. Note Women can report more than one source from which they sought help. Source International Institute for Population Sciences and ICF (2017). National Family Health Survey (NFHS 4) 2015–16: West Bengal. Mumbai: IIPS

kiosks in various wards. According to her, kiosks have not only provided counsellingbased mental healthcare to the population but also developed skills of women from deprived backgrounds.

2.6 Knowledge Sharing with Community-Level Resources Like Self-help Groups Anjali adopted the policy of building on resources that the community already has—SHG network—to roll out the mental health programme. The Janamanas training aimed to share knowledge on mental health from a rights-based perspective in order to develop skills of the local community to take charge of their mental health. Resource persons from Anjali developed the curriculum for the training programme keeping in mind the findings from the survey. After the survey was conducted, Anjali commenced the Janamanas programme with training for SHG members (all female). The training programme was spread over 6 months for 108 participants selected by community organisers from the three municipalities. In the course of the sessions which were participatory, it emerged that the participants’ understanding of mental health was in terms of lack of illness, i.e. an illness perspective. The trainers discussed mental illness, meaning of positive mental health, rights of persons with mental health issues and right to mental health. The founder, Anjali, states that, ‘Ini-

52

2 How Janamanas Partners with Government and Women …

tially Janamanas had only the training programme and we pitched it as a livelihood option’. The training was also an avenue for the participants to share their day-to-day family issues. According to the Coordinator, Janamanas, ‘Nobody had given them a chance to talk and nobody had listened to them. At the training they felt respected, as what they spoke was taken seriously. This brought about a Parivartan (change) in their lives’.

2.6.1 Audience Analysis Prior to initiating the Janamanas training, Anjali conducts an audience analysis which gauges the participants’ interest, understanding and connection to mental health and wellness by administering a questionnaire. The analysis also serves as a training needs assessment. The objectives of the audience analysis are: • To assess the level of interest and commitment of the audience towards mental health and wellness. • To understand the training need of the participants on issues regarding mental health, illness and rights. • To know their expectation from the training. The training need of the participants is assessed through the following questions: • • • • • • • •

What is mental health? What is mental illness? What is the difference between mental health and mental illness? Name some common mental illness that you have heard of. What the common types of mental illness which we come across regularly? What is human rights? What are the rights that you are entitled (provided by the constitution) in your life? What are the rights that you can practice in your life?

The responses are ranked and participants are selected for the Janamanas training on the following criteria: • • • • • •

Member of SHG. Age between 18 and 45 years. Should have 8 years of schooling. Family income does not exceed Rs. 3000 a month. First-hand experiences of mental health condition in self and others. Individual scores on knowledge of the participants on issues related to mental health and rights.

2.6 Knowledge Sharing with Community-Level Resources Like …

53

After the Janamanas training, the women selected to take charge of the community mental health programme were trained in basic counselling skills for another 6 months.

2.6.2 Training Programme for Community Cadre Creating a community-based mental health cadre who will implement the community mental health programme is central to Janamanas. The aim is to enable the community to be in charge of their mental health and to develop a group of 20 women leaders to anchor the programme. In the first training programme at Khardah, Rajarhat Gopalpur and Kamarhati, government health workers were included in the training programme. But their participation in the programme declined considerably after the kiosks were set up due to their workload as health workers. Consequently, in the next training programme at Bishnupur Panchayat, only members of SHGs were selected for the training. SHG women who are selected by the community organisers undergo a six-month training comprising 20 sessions, including the introductory session and exposure visit. Training is held twice a month for each group and each session lasts for 4 h. The training emphasises the right to mental health and discusses the role of Anjali and the community in making the state responsive to mental health (Fig. 2.4). The curriculum is modified after audience analysis (Table 2.4). All sessions start with ‘Walker’s Cycle’, which is a game connected to the theme of the session. Participants have a personal as well as reality connect to the theme. The sessions are not about learning by taking notes, but rather with the use of case studies, film show followed by a discussion, play acting, advocacy, message development, poster making, preparation of survey questionnaire and exposure visits. Most of the activities are group-based except the initial session which is on ‘Self’. The section on gender

Fig. 2.4 SHG members at training programme—Janamanas. Source Shared by Anjali

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2 How Janamanas Partners with Government and Women …

Table 2.4 Curriculum for Janamanas training programme, 2012 S. no.

Sections

Number of sessions

Topic

1

Section 1 Self

4

Self-identification and its importance Self- and mental wellness Self and society Barriers to mental wellness of the self

2

Section 2 Mental wellness

4

Introducing mental health and illness From illness to wellness via health Mental wellness of your family Mental wellness of your community

3

Section 3 Gender and sexuality

4

Introducing gender as a concept Gender and mental wellness Introducing sexuality as a concept Sexuality and mental wellness

4

Section 4 Communication

4

Introducing communication as a tool for wellness Hearing and listening Empathy, concept and practice Non-judgmental responding

5

Section 5 Rights

1 session

Everyone’s right to wellness

6

Section 6 Livelihood

1 session

Livelihood and wellness

7

Section 7 Projects

4 weeks

Projects

Source Project documents

and sexuality has been newly introduced at the training in Bishnupur Panchayat, as they realised that participants wanted to discuss these issues. The focus of the current training is more on wellness rather than lack of illness. Once the participants complete their action projects, the training culminates in the Janamanas mela, in which participants showcase their projects. On completion of this cycle, those selected as kiosk operators undergo a six-month training in counselling. Anjali conducts the programme in partnership with Samikshani. Resource persons include psychologists and psychiatrists. Participants are taught basic counselling skills without the use of psychological terminology. The training focuses on being non-judgemental and enhancing listening skills. The training coordinator discusses the challenges in training, as mental health needs a different sensibility which is difficult to operationalise in the context of poverty.

2.7 Outreach Camps to Sensitise Community About Mental Health

55

2.7 Outreach Camps to Sensitise Community About Mental Health Janamanas has different types of community awareness programmes, namely, outreach camps, street corner meetings, information dissemination at SHG meetings and home visits. Street corner awareness programmes, including street theatre, are conducted by the outreach workers once in 3 months. The outreach workers discuss mental health and availability of mental health services at the kiosk. Camps are rotated among all the wards in the municipality. At present, outreach camps are held twice a month in the implementation area, though it was a weekly programme earlier. The decision to hold the camp at bimonthly intervals was taken by the camp organisers and kiosk operators, as there was hardly any time to incorporate feedback and plan for the next month. Camps are held only after a planning and feedback meeting. The camp organisers are in charge of organising the camp, though a few kiosk coordinators also attend the camp. The camps are generally organised in a school or a club, but not in office spaces of any political party. While the programme believes in partnership with the government, affiliation with political parties is avoided. In order to mobilise people for the camp, banners are put up announcing the date and venue of the camp and SHG members residing in the vicinity of the venue are requested to inform their neighbourhood about the event (Fig. 2.5). If the camp is held at a club, then the camp organisers ensure that the club secretary participates in the programme and if it is held at a school, then the principal joins. The health worker of the municipality usually gives the invitation speech. They do try to get the municipal council chairperson to attend, since their presence increases

Fig. 2.5 Outreach camp of Janamanas. Source Shared by Anjali

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2 How Janamanas Partners with Government and Women …

the value and visibility of the programme. The chairperson and school principal or club secretary speak about the importance of addressing an area that is usually neglected—mental health issues. They speak about not feeling ashamed if one is affected by mental illness, as treatment is available and reiterate the need to seek help for mental health issues, while highlighting the kiosk’s services. The camp organisers and kiosk operators speak about wellness and need for everyone not to neglect their own mind. They give examples of mental health issues faced in the community and need to address these issues in the community rather than in a mental hospital. The camp’s duration is about 30–45 min and around 30–45 people attend it. They usually target women in the locality, as women are comfortable about sharing their problems at a camp, although men also attend. The camp organisers and kiosk operators distribute leaflets, which provide information about the address of the kiosk and type of services available, to the participants. After the session, participants are encouraged to clarify doubts and discuss any issues that they face. Participants speak about family members/friends who they feel might have a mental health issue and they are asked to refer the person to the kiosk. The main issues discussed and signatures of all participants are documented in the camp register. Usually, they get four to five referrals to the kiosk after the camp. The kiosk operators have observed that referrals are higher when the camp is held at a venue closer to the kiosk. According to a kiosk operator, the main objectives of the camp are to: • Disseminate information about the availability of mental health services at the kiosk. • Assert the importance of taking care of one’s mind. The kiosk operators, camp organisers and outreach workers belong to SHGs and they use that network to disseminate information about mental health and services at the kiosk. These discussions are of 15-min duration and take place at the bimonthly SHG meetings. All the group leaders are requested to share the message of mental health and the kiosk among members in their group. At an individual level, kiosk operators spread this message at gatherings which involve group participation like yoga classes. Occasionally, they do come across instances of abuse of the person with mental health issues by neighbours, which take the form of verbal abuse like taunting the person with mental health issues by calling her/him a ‘Pagal’. In such instances, kiosk operators educate those involved in the abuse and stress that persons with mental health issues are no different from a person with diabetes or hypertension. Just as diabetes and hypertension can be managed with medication, so too can mental illness. Outreach workers and kiosk operators visit homes in their neighbourhood to spread awareness about mental health and mental health services available at the kiosk. They undertake nearly 20–30 home visits in a month. Table 2.5 present the information on the awareness activities carried out by Janamanas during 2010–12. In the last two years, Janamanas staff has conducted nearly six outreach camps every month amounting to 144 camps with 5760 participants. Targets for participation at the camps have been achieved with an average of 40 participants per camp. Awareness of mental health and the kiosk has been disseminated through 576 home visits in the community and at 288 SHG meetings.

2.8 Community Women-Led Mental Health Kiosks

57

Table 2.5 Community awareness activities of Janamanas, 2010–12 S. no.

Community awareness activities

1

Number of outreach camps

Number

2

Number of participants in outreach camp

3

Number of home visits made by kiosk operators

576

4

Number of mental health awareness talk by kiosk operators at SHG meetings

288

144 5760

Note Data for the period 2008–09 is not available for this study Source Janamanas programme records

2.8 Community Women-Led Mental Health Kiosks The human resource structure of Janamanas indicates the predominance of community-level women workers, as 30 of 32 staff are community-level workers hired from the community (Table 2.6). At Rajarhat Municipality, staff salaries were paid by the municipality since 2011. The use of community-based staff, support from the government in provision of infrastructure and taking over the programme in one municipality, and referral to health care facilities for those in need of medication have kept costs relatively low. The SHG members were not keen to become primary mental healthcare workers in the community. Anjali understood that something more concrete was needed. The municipality authorities suggested starting a centre which could be used by the community for counselling and referral services. The decision to start mental health kiosks was taken within 3 months after the training had commenced. The SHG members were apprehensive about the acceptability of a mental health service that did not have a doctor or medicines. The founder, Anjali, asked them to recollect their first experience with the training in which they did not expect pills, but were content

Table 2.6 Human resource structure of Janamanas in 2012

S. no.

Locality/Centre

Staff designation

1

Rajarhat Gopalpur

Kiosk operators Outreach workers

7

2

Khardah

Kiosk operators

5

Outreach workers

3

3

Anjali

6

Camp organisers

9

Coordinator

1

Trainer Total

Number

1 32

Note All staff are female; salary of Rajarhat-Gopalpur staff are paid by the municipality Source Interview with Janamanas coordinator

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Fig. 2.6 Kiosk operators at Janamanas Kiosk. Source Shared by Anjali

that they could share their problems with someone. The kiosk was operationalised in 2008 and currently functions as a counselling service cum referral centre for persons with mental health issues (Fig. 2.6). Due to the interaction between mental health and poverty, the kiosks emphasise on the social aspects of mental illness such as gender, sexuality, livelihoods, access to basic services, citizenship, etc. Consequently, the women who lead the Janamanas programme go beyond just counselling. They extend their help in facilitating public–government interface. The kiosk operators and outreach workers also involve themselves in government campaigns like immunisation and education. This close connect to the community is what strengthens their problem-solving skills. From the participants of the training programme, after identifying the best candidates, some were selected as kiosk operators, some as camp organisers and some as outreach workers. Outreach workers are the first point of contact for a person with mental health needs in the community, i.e. they identify and refer persons with mental health issues to the kiosk. Kiosk operators are in charge of the kiosk and provide counselling and referral services. Camp organisers plan and conduct outreach camps and liaison with community stakeholders to hold awareness programmes. The staff are encouraged to formulate strategies or in other words to use the skills that they acquired during the training. The Janamanas coordinator does not formulate the kiosk’s plan and strategies, but rather facilitates, as Anjali believes in workplace autonomy. The selected women participated in more than one network—as members of a government livelihood scheme and as members of a community mental health programme which was jointly implemented by an NGO and the government. One of the kiosk operators spoke about the factors that motivated her to join and continue with Janamanas. She spoke about the respect and recognition that she got from the community as one of the main drivers behind her participation. She also spoke

2.8 Community Women-Led Mental Health Kiosks

59

about how her engagement with Anjali was her first exposure to a working life. Although her family was hesitant initially, she successfully negotiated with them and continued, as it gave her the opportunity to be independent and learn something new. The Janamanas coordinator felt that love, respect and a space to be heard were motivating factors in women opting to work with the programme.

2.9 Involvement of Community Stakeholders in Identifying Persons in Need of Mental Health Assistance At Janamanas, the stress is on getting multiple stakeholders involved in the identification process. The stakeholders involved in identification are outreach workers, kiosk operators, SHG members, health workers, local self-government institutions (panchayats) leaders, partner NGOs, municipal councillor and the general community. The outreach workers are the point of first contact in the community and are involved in case identification in their locality. Outreach workers undertake home visits to identify persons with a mental health issue in the household. Details provided by a family are not taken down in front of them, rather it is noted later, as family members get suspicious about confidential information being compromised. Therefore at least two outreach workers or kiosk operators go on the home visit to ensure that there is no loss of information. This information is then transferred to a Home Visit Register after the outreach worker intimates the kiosk. The Home Visit Register maintained at the kiosk has information on each person with mental health issues’ name, area, gender, age, monthly income, description of the person with mental health issues/family’s status and action to be taken. The family and person with mental health issues are informed about the services at the kiosk and are requested to meet the kiosk operators at the kiosk. When Janamanas was initiated, outreach workers were paid Rs. 5 for every referral to the kiosk though currently they are not remunerated, as it is voluntary. As kiosk operators spread awareness about mental health and services available at the kiosk during SHG meetings, SHG members identify and refer persons with mental health issues to the kiosk. Partner NGOs in the community also refer persons with mental health issues to the kiosk. Similarly, municipal councillor, ward president (political leader), club secretary, club member and health workers of the municipality identify and refer persons with mental health issues. At a group discussion with the persons experiencing mental health issues and their caregivers, when they were asked about how they started using the kiosk, they mentioned that they were referred by the kiosk operator, outreach worker, municipal chairperson and self-referral after seeing the kiosk banner. The kiosk operators reported that in their experience the most important source of referrals to the kiosk are outreach camp, outreach workers and walk-ins. The information displayed in Fig. 2.7 corroborates what persons with mental health issues, caregivers and kiosk operators stated about referral to the kiosk. The largest proportion of referrals to the

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2 How Janamanas Partners with Government and Women …

5%

5%

5%

25%

Family member Other NGO Neighbour

25%

10%

Outreach camp Self Help Group member

15%

10%

Health worker Municipality staff Voluntary walk in

Fig. 2.7 Percentage distribution of persons with mental health issues registered with Janamanas by source of referral to kiosk, 2010–12. Source Janamanas programme records

kiosk have been through outreach camps, voluntary walk-ins and by health workers highlighting the importance of communication strategy and use of local human resources in encouraging the use of mental health services. Establishing networks with the municipality and SHG has also proved to be a good strategy, as both together accounts for 20% of referrals.

2.10 Counselling Services at the Mental Health Kiosk The kiosk functions on 5 days a week at Rajarhat Gopalpur and thrice a week at Khardah. The sessions are usually held one-to-one and last for 30 min if it is a new registration. If a client can afford it, they are encouraged to pay Re 1 in a drop box for the services that they use. The monthly caseload at the kiosk is nearly 20. Home-based counselling services are provided to clients if they live at a considerable distance from the kiosk or if the caregivers are too old to bring them or if the client is not in a condition to be brought to the kiosk. Speaking about service utilisation during a group discussion at the kiosk at Khardah, a caregiver highlighted how her family member benefited from homebased counselling services provided by the kiosk operators. After the person went through a failed relationship, she developed problems like poor self-care, withdrawal from social life, poor intake of food and physical aggression with her parents. Both parents passed away in quick succession. This is when the girl’s aunt approached the kiosk for help. The kiosk operators had to make several visits every week to the girl’s home before she opened up to them. After a month of counselling, she made progress and eventually became normal. A caregiver spoke about how she benefitted from counselling services at Janamanas. Her husband who was working suddenly felt that mosquitoes were following him and trying to kill him. He also felt that people in the temple were conspiring

2.10 Counselling Services at the Mental Health Kiosk

61

against him. He became suspicious and would refuse to eat food thinking that it was poisoned. Further, he started behaving in a violent manner. After dealing with her husband’s behaviour on a day-to-day basis, the caregiver had become depressed and hopelessness had engulfed her. Since she was an SHG member, she knew about the kiosk and approached them to help both her and her husband. Initially, her husband agreed to take treatment and was referred to a psychiatrist by the kiosk operators. However, he does not take his medicines regularly and tends to discontinue when he feels better. She benefitted from counselling and has learned to cope with her husband’s illness. The kiosks have provided services for 2545 clients during the period 2010–12. The kiosk operators and outreach workers have ensured that the most vulnerable in the slum like women and those belonging to the lowest monthly income group categories access mental health services. It can be observed that most of the persons with mental health issues are in the working age group, more than half of them are females, are literate and belong to severely disadvantaged economic groups with most of them reporting a monthly income of less than Rs. 3000 (Table 2.7). When a new person with mental health issues is referred to the kiosk, details are documented in the Kiosk Register. The details collected are name, address, gender, age, monthly income, reason for coming to kiosk and how the person with mental health issues came to know about the kiosk. In the intake form, name, age, gender and ward number to which the person with mental health issues belongs are noted down. The problem for which the person with mental health issues has visited the kiosk, the discussion with her/him, resolution points are recorded in the form. Information at the level of persons with mental health issues is not transferred from kiosks to Anjali. Only summary data of persons with mental health issues is shared with Anjali at the end of the month. The baseline survey which was done prior to rolling out the programme had highlighted the contributory factors to mental health problems and the information presented in Fig. 2.8 substantiates this. The community primarily utilise the kiosk to address family-related issues like conflict within family (27%), relationship issues (20%), intimate partner violence (15%), scholastic performance of children and substance use. It is clear that most of the clients utilised the kiosks for interpersonal issues (72%). The kiosk operators have observed that in case of females, problems arise due to prevailing patriarchal norms, which dictate how they should lead their lives. Only three per cent reported to the kiosk with acute mental illness. Most of the interpersonal issues are handled by the kiosk operators, which show that common mental health problems can be managed at the community-level by trained laypersons. After three or four sittings, if kiosk operators find that the person does not share her/his problem, they understand that she/he needs specialised attention and refer her/him to a doctor. In the case of those whose families are extremely poor, the kiosk operators accompany them to the hospital. One of the kiosk operators stated that the presence of a psychiatrist and medicines at the kiosk will increase utilisation of the kiosk.

62 Table 2.7 Percentage distribution of persons with mental health issues registered with Janamanas by socio-demographic characteristics, 2010–12

2 How Janamanas Partners with Government and Women …

Socio-demographic characteristics

Percentage distribution

1. Age group (in years)

0–14

8.1 (207)

15–29

22.8 (579)

30–44

33.3 (848)

45–59

28.5 (725)

2. Gender

3. Literacy status

4. Religion

5. Monthly household income

60+

7.3 (186)

Total

100.0 (2545)

Male

46.9 (1193)

Female

53.1 (1352)

Total

100.0 (2545)

Illiterate

–

Literate

100.0 (2545)

Total

100.0 (2545)

Hindu

88.0 (2240)

Muslim

12.0 (305)

Total

100.0 (2545)

Less than 1000

20.4 (239)

1001–3000

44.1 (517)

3001–5000

15.3 (179)

5001–10,000

11.8 (139)

10,001–15,000

3.4 (40)

Above 15,000

5.1 (60)

Total

100.0 (1173)

Note 1372 (54%) persons with mental health issues have not revealed their monthly household income; data for the period 2008–09 is not available for this study Source Janamanas programme records

2.11 Referral to Other Service Providers Kiosk operators refer persons with mental health issues who require medical attention to psychiatrists. At Khardah Municipality, the kiosk operators refer persons with mental health issues to the nearest available psychiatrist, whereas at Rajarhat–Gopalpur, they refer them to the outpatient department of Pavlov Hospital. At Rajarhat— Gopalpur, they refer around five cases every month to Pavlov Hospital. At Khardah, kiosk operators refer the same number to a private psychiatrist who provides treatment at a discounted fee. In case of women experiencing domestic violence, they are referred to one of the partner NGOs, Swayam for legal aid. Kiosk operators help community members with disability certification for physical disability. All referrals are documented in the Kiosk Register. The importance of the public health system

2.11 Referral to Other Service Providers

63 Family conflict

3%

4% 5% 1%

Intimate partner violence

27%

10%

Relationship issues Scholastic performance of children

15%

15% 20%

Substance use Acute mental illness Issues related to sexual health/ activity/ preference/ orientation Issues related to physical disability within family members Issues related to aged family members

Fig. 2.8 Percentage distribution of persons with mental health issues registered with Janamanas by reason for utilising kiosks, 2010–12. Source Janamanas programme records

for low socio-economic status group communities is underscored by the fact that of the 255 referrals to health care facilities, 80% were to government health facilities. This also reveals Anjali’s commitment to work with the public health system. Discussion with a caregiver revealed how her sister benefitted from home-based counselling and referral to government hospital psychiatric unit (GHPU) for medical care. ‘My sister eloped with a boy while she was still in school. Within three months of her marriage, she complained to her natal family that her husband and his parents were abusing her. Shortly after that, she attempted suicide. Her husband’s family seems to have admitted her in a hospital. But they did not allow my sister to return to her natal home. It is after her second admission to a hospital that they allowed her to go home with her mother. Our mother, who was from a village attributed mental illness to black magic and on the advice of neighbours took her to faith healer. However, the solace and relief that our mother expected from faith healing eluded her, although she spent nearly Rs. 20000 and had to mortgage her jewels to pay the faith healer. The turning point in the girl’s path towards recovery happened when someone from the Municipality suggested to me that we contact the kiosk for help. As the girl could not be taken to the kiosk, the kiosk operators visited her at home. From her symptoms they understood that she needed immediate medical attention and arranged to take her to the General Hospital Psychiatry Unit, where she was prescribed medicines. They accompanied her for the follow-up visit as well. She was also provided home-based counselling. With medication and counselling my sister has made good progress and is now working in a home-based industry in her neighbourhood. Our mother hopes that she would be able to complete her education eventually’.

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2.12 Autonomy in Decision on Follow-up Care: Client-Centred Practice After the first session, although the person is asked to come for the next session, it is left to the individual to decide about continuing with the intervention. Persons with mental health issues usually ask for an appointment. If the person comes back, counselling sessions lasting for about 15 min are provided. The follow-up information is recorded in the Kiosk Register or the Intake Form. Changes in the person’s condition are recorded in the case history column in the Kiosk Register. The date for the next appointment at the kiosk is noted in the register and intimated to the person. Earlier, there was a system of telephonic follow-up. However, this was discontinued after a month, as the kiosk operators were inundated with calls at any time of the day and night and people stopped coming to the kiosk. Home visits are done only if necessary, particularly to the following cases: • • • •

Persons affected by severe domestic violence. Person is too poor to go to the government mental hospital to collect medicines. Person requires to be taken to the hospital in an ambulance. Person has been referred by an important stakeholder.

The Janamanas coordinator has suggested that kiosk operators should encourage neighbours of the person with mental health issues to conduct home visits in order to avoid taking on work beyond their capacity.

2.13 Networking and Advocacy with Government, Other NGOs: Mental Healthcare Needs, Livelihood and Legal Service Providers According to the Janamanas replication manual, the following principles guide Anjali’s collaboration: • Positive mental health is essential for all, and the rights of persons living with psychosocial disability need to be strengthened. • Women from resource-poor communities have the potential to move from the margins into the centre of social change processes. • Livelihoods with dignity can be a powerful path to sustain local community mental health in resource-poor communities. • The government can be a powerful ally and change agent in CMHPs.

Implementation of Janamanas involved networking with municipality authorities, as Anjali wanted the municipality to own the programme. The space for the training has been provided by the municipality. In fact, in Rajarhat, the programme has been handed over to the municipality in 2011 and they pay the staff’s salary (six kiosk operators and seven outreach workers). One of the objectives of Janamanas

2.13 Networking and Advocacy with Government, Other NGOs …

65

is to integrate mental health with the District Development Plan, which necessitates considerable networking with the government and this has been achieved at Rajarhat Gopalpur Municipality. Minutes of stakeholder meetings are documented by the Janamanas coordinator. Janamanas staff liaises with the municipality, local clubs and schools to organise outreach camps, with the District General Hospital for disability certification and with Pavlov mental Hospital for referrals. Anjali has established relationships with NGOs working in the locality that Janamanas is implemented, like Jeevika. They also work with Prayas and Swayam, NGOs which works on substance use and legal aid.

2.14 Internal Monitoring Kiosk operators submit a monthly report of their activities and achievements for the period to the Janamanas coordinator. The Janamanas coordinator compiles the progress at the kiosk and outreach camps in a consolidated report. According to her, ‘We realised the importance of documentation, as at the end of the month if nothing is written down, work cannot be projected’. At the time of our field visit, Janamanas did not have an MIS. Post that, they have put in place an MIS recording basic demographic data of clients and the reason for them using services. The programme was evaluated internally after 2 years by interviewing key stakeholders in the municipality like the chairperson, urban planner, town project officer of Khardah Municipality; chairperson, executive officer, urban planner, community organiser of Rajarhat Gopalpur Municipality; and chairperson, council member, town project officer and community organiser of Kamarhati Municipality.

2.15 Impact of Janamanas: Institutionalising the Community Mental Health Programme with the Municipality At the time of our documentation, there was one internal evaluation and one external documentation of Janamanas. Both look at processes and opinions of key stakeholders. As an evaluation had not yet been done, we do not have quantitative information.

2.15.1 Developing Community-Based Leadership An internal evaluation conducted by Anjali quoted municipality functionaries saying that a positive aspect of the programme was that women from the municipality work for people in the municipality. The municipality functionaries stated that though

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initially the concept underlying the programme was not understood, as there was poor awareness about positive mental health, the programme has managed to help people understand that there is a need for counselling and medicines, and that for some improvement is achieved with just counselling. An external evaluation by One World Foundation India (2011) described the training of community-based cadre as one of the major impacts of the programme. This is especially so as the training of local women from socio-economically disadvantaged sections of society has an impact on skilling them and increasing their capacity to earn a livelihood. In addition, the employment of women from the community makes the mental health programme more acceptable to residents of that locality.

2.15.2 Deliver Mental Healthcare to Last Mile Communities One World Foundation India (2011) argues that Janamanas delivered mental health care in underserved areas with a focus on promotional mental healthcare. For the people in these areas, having a service within their geography has implications for reduction of indirect costs on travel to a health facility. This factor was appreciated by municipality functionaries in an internal evaluation (Bandhopadhyay and Chakraborty 2009).

2.15.3 Mainstreaming Mental Healthcare in Urban Local Bodies The documentation by One World Foundation India found that Janamanas is a best practice model, as Anjali has worked with the government to mainstream mental health care in the District Development Plan. Functionaries of the municipality were keen that the programme continues and that municipality health staff should also be trained by Anjali. They felt that acceptance by the municipality was an important reason for Janamanas’s success (Bandhopadhyay and Chakraborty 2009).

2.15.4 Concerns and Suggestions One of the municipality functionaries mentioned that improving awareness about positive mental health requires more awareness programmes using easy-tounderstand messages for ordinary people in the community. He also expressed concern about long-run sustainability of the programme. The programme has been discontinued at Kamarhati and Khardah.

2.15 Impact of Janamanas: Institutionalising the Community Mental …

67

One World Foundation India (2011) highlight that funding, political interference, mindset of the community, inadequate visibility and lack of adequate medical attention were the main challenges. A comprehensive model according to them should have psychiatric care. They also argued for making the training more rigorous in order to enable community-level cadre to address complex psychosocial issues. It was also suggested to create new cadre of workers comprising past users and improve the salary structures of kiosk operators to maintain their motivation. Anjali has accepted some of the recommendations and were considering inclusion of psychiatric care.

2.16 Challenges of Funding, Staff Motivation and Community Awareness According to key functionaries of Anjali, the shift in paradigm from medical to non-medical mental healthcare was something that kiosk operators found difficult to accept. Many of the kiosk operators found the low salary a demotivating factor in addition to dealing with their family members’ hostile attitude to them working. Functionaries of Anjali spoke about the need to constantly motivate kiosk operators, due to their declining enthusiasm. While refresher trainings were required to update kiosk operators’ knowledge, due to funding constraints, it could not be carried out. This financial barrier to training can cause stagnation of the programme, as the strategy of Janamanas has been on developing leadership at the grassroots level to provide mental healthcare in the community. The municipality has not responded to kiosk operators’ request for helping persons and caregivers dealing with extreme poverty and mental illness. Also, the government understands mental health from a clinical perspective, as it is more tangible than the Janamanas approach which looks at mental health promotion and addressing social determinants. It is probably because of this non-medical approach that the government is not sufficiently invested in this approach. At the community level, the staff have to deal with their suspicions their work. Kiosk operators also find it exhausting to meet the demands of caregivers like escorting clients to a hospital. Owing to poor awareness among caregivers about the need for continuity of treatment in the case of severe mental disorders, some clients drop out of treatment. Caregivers also occasionally undermine efforts taken by kiosk operators and attribute recovery to faith healing.

2.17 Recommendation to Other Organisations Wishing to Start Community-Based Mental Health Services The founder, Anjali has the following suggestions for other organisations wishing to start community mental health services: • Comprehensive understanding of the community.

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• • • • • • • • • • • •

2 How Janamanas Partners with Government and Women …

Spend time in the community and listen to all sections, especially ordinary people. Constant contact with the community. Programme has to be designed according to communities’ needs. Understand how power plays out in the government system. Value of the organisation has to match that of the programme. Map the resources on the community. Promote the safety of women. Simplified data recording formats. Note and act on communities’ queries during awareness programmes. Understanding cost implications. Cost-effective approach. Develop resilience in the community.

Appendix See Table 2.8.

Table 2.8 Components of Janamanas S. no.

Component

Objective

Process

DocumentationPerson responsible

1

Capacity building

To develop community mental health cadre and leaders

• Curriculum development • Audience analysis • Selection of participants (SHG leaders) • Training on right to mental health

Format

Training coordinator, Janamanas coordinator

2

Community awareness

To disseminate knowledge about mental health and services in the kiosk

• Outreach camp Camp • Street corner register meetings • SHG meetings • Home visit • Leaflets • Hoarding/banner

Camp organiser, kiosk operators, outreach workers, Janamanas coordinator

3

Identification To increase and referral utilisation of to kiosk mental health service

• Home visit • Outreach camp • Community stakeholders

Outreach worker, kiosk operators

Home visit register

(continued)

References

69

Table 2.8 (continued) S. no.

Component

Objective

Process

DocumentationPerson responsible

4

Counselling

To improve mental health and wellbeing

Counselling sessions

Case history register Kiosk register/Intake form

Kiosk operators

5

Referral to other service providers

To improve clinical and social aspects

• Refer to psychiatrist for medical treatment • Refer to NGO for legal aid • Refer to government for disability pension

Kiosk register

Kiosk operators

6

Follow-up

To enable continuity of care

• Home visit • Counselling at kiosk

Kiosk register

Kiosk operators

7

Networking and advocacy

To increase community ownership and acceptance To include mental health in District Development Plan

• Partner with NGOs already working in the selected wards • Liaison with municipality

Minutes book

Janamanas coordinator

Note Instead of intake form, case history register is being used at Rajarhat Municipality Kiosk after the kiosk was handed over to the municipality Source Documents of Janamanas and discussion with kiosk operators, Janamanas coordinator, founder

References Bandhopadhyay, S. B., & Chakraborty, S. (2009). Impact assessment of Janamanas, 2007–09. Kolkata: Anjali. Baseline. (2008). Janamanas: A mental health survey. Census of India. (2011a). District census handbook: North Twenty Four Parganas. West Bengal: Directorate of Census Operations. Census of India. (2011b). District census handbook: South Twenty Four Parganas. West Bengal: Directorate of Census Operations. Census of India. (2011c). District census handbook: Koch Bihar. West Bengal: Directorate of Census Operations.

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Krug, E. G., Dahlberg, L. L., Mercy, J. A., Zwi, A. B., & Lozano, R. (2002). World report on violence and health. Geneva: World Health Organisation. One World Foundation India. (2011). Janamanas community-based mental health project: Best practice documentation. New Delhi: One World Foundation India.

Chapter 3

Integration of Mental Healthcare with General Healthcare Services for Tribals: The Decentralised Approach to Community Mental Health Programme by ASHWINI Abstract In 2005, ASHWINI initiated its Community Mental Health Programme (CMHP) by integrating mental health with general health services as a response to high suicide rates among the tribal population. The mental health programme is decentralised and operates through area centres, which are managed by tribal health animators. Health animators along with village health guides have played a crucial role in generating awareness among tribals about the need to take treatment for mental illness while maintaining their traditional belief in healing by oracles. As a result of empowering tribals to take charge of their health, continuity of care is ensured. Keywords Tribal mental health · Traditional healing · Oracle · Decentralised mental healthcare, health animator · Follow-up The evolution of Association for Health Welfare in the Nilgiris (ASHWINI), a NonGovernment Organisation (NGO) based in Gudalur taluk in The Nilgiris district is intertwined with the work done by Action for Community Organisation, Rehabilitation and Development (ACCORD). Gudalur was witness to rampant exploitation of tribals, which resulted in the dispossession of their land, loss of livelihood and marginalisation. Tribals were forced to become agricultural labourers on the very land that belonged to them in order to eke out a subsistence living. In 1986, a group of social activists who were moved by the plight of the tribals in Gudalur started ACCORD in order to mobilise tribal communities (Paniya, Bettakurumba, Mullukurumba, Kattunaicken and Irula) to fight for their land rights, self-sufficiency and freedom from exploitation. Tribals were organised into village level organisations called Sangam, and in 1988 Sangams were federated to form Adivasi Munnetra Sangam (AMS). In the course of their work, ACCORD was confronted with severe health deprivations among the tribals with unacceptably high levels of malnutrition, maternal and child death and death from communicable diseases like dysentery and tuberculosis. They realised that health was a core issue that needed to be addressed. In 1987, two doctors joined ACCORD and launched a community health programme in the tribal villages, based on the ideology of self-sufficiency of tribal communities in managing health. The doctors trained and recruited tribal women as health workers, who were at the forefront in the health transformation that was to take place among © Springer Nature Singapore Pte Ltd. 2019 G. Balagopal and A. R. M. Kapanee, Mental Health Care Services in Community Settings, https://doi.org/10.1007/978-981-13-9101-9_3

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3 Integration of Mental Healthcare with General Healthcare …

tribals. The health workers’ efforts were complemented by mobile clinics, which visited the villages to provide medical care. Concerted action by the health workers and medical team resulted in an improvement in the health-seeking behaviour. There were inevitable cases needing hospitalisation. But tribals could not afford private health care nor did they want to depend on the ill-equipped government hospitals that discriminated against them. The village sangams strongly felt that the community needed a hospital of its own. A search for suitable people to start the hospital ensued, and with the induction of a doctor couple (surgeon and gynaecologist), the Gudalur Adivasi Hospital (GAH) was set up in 1990. ASHWINI was registered as a separate legal entity in 1990 with the vision of setting up a ‘Community owned and managed health programme’. The staff were identified from the tribal community and given skills training in nursing, accounting, lab, etc. The Community Health Programme (CHP) expanded to cover over 300 hamlets and a population of about 20,000 in the two taluks of Gudalur and Pandalur. This was decentralised with the establishment of eight area centres managed by Area Centre Teams (ACTs) covering 20–60 villages each. The health component in the area centre was led by health animators—tribal nurses trained by ASHWINI so that health care would reach peripheral areas. In a stark departure from the practice of specialists appropriating decision-making, ASHWINI is characterised by the representation of tribals on the executive committee and general body. The organisation’s decision to foray into mental health care was precipitated by a startling finding in 2004—suicide was the second leading cause of death after cancer. Following this, they began to identify more tribals with mental illness.

3.1 Decentralised Mental Healthcare Services In 2005, ASHWINI initiated its Community Mental Health Programme (CMHP) by integrating mental health with general health services. The CMHP is implemented in Gudalur and Pandalur Taluks in The Nilgiris district of Tamil Nadu. Scheduled Tribes (STs who are also referred to as tribals or Adivasis) comprised 4.5% of the total population in The Nilgiris and the proportion was higher in rural than urban areas. The total population in Gudalur was 105,196 and in Pandalur was 125,877. Each taluk was divided into eight areas for administrative purposes. The four area centres in Gudalur Taluk are Gudalur, Devala, Devarshola and Srimadurai. The four area centres in Pandalur Taluk are Erumad, Ayyankolly, Ponnani and Pattavayal.

3.2 Public Education and Medical Services for Tribals …

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3.2 Public Education and Medical Services for Tribals Comprise a Community Mental Health Programme To ASHWINI, community is the tribal community and primarily tribals who are members of the AMS. The community is thus defined in terms of identity and as residents of a geographical location. According to one of the doctors, ‘It is difficult to access villages that are not part of the Sangam. In Sangam villages one can easily talk to the “thalaivars” (village heads)’. The Vision/Mission of the CMHP are: • ‘Integration of mental health with general healthcare’. The CMHP of ASHWINI follows the Sakalawara initiative, with public education, case detection and follow-up being the main components. To the doctors, the aim of a CMHP is to: • • • • • • •

Create awareness in the community about mental illness, Ensure early detection and treatment, Provide continuity of care, Help the community take responsibility for its mentally ill patients, Provide treatment close to home, Give economic support during hospitalisation and Rehabilitation.

3.3 High Suicide Mortality Among Tribals and Community Perspectives on Mental Illness The emergence of suicide as one of the leading causes of death among the tribal population served by ASHWINI, opened up an investigation into this phenomenon. They identified this after undertaking an audit of all the deaths and found that suicide was a major cause of death. When ASHWINI examined the reason for suicide, they found that several of them had displayed changes in their behavioural pattern before committing suicide. The team felt that just as ASHWINI had managed to drastically bring down maternal deaths, they could intervene to prevent suicides. A psychiatrist from St. John’s Medical College, Bengaluru, provided technical assistance and they were able to identify mental illness among the tribal community. However, they were unable to follow-up clients, as many in the health team did not believe that mental illness was an illness that could be treated. Clearly, the community was resistant to biomedical notions of mental health. ASHWINI wanted to intervene and make a difference in changing the community’s perception and enabling people to accept mental healthcare. At around this time, ASHWINI was offered funding for this by Tata Trusts.

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Prior to commencing mental health services, ASHWINI conducted a baseline survey to identify the number of persons with mental illness in the 184 Sangam Villages. Focus Group Discussions (FGDs) with 2759 families were used to understand community perception of mental illness and to identify clients with the same (ASHWINI 2009). Participants identified 86 persons with mental illness, who were on treatment and 67 persons who, they felt, had a mental illness, 17 cases of epilepsy, 11 cases of intellectual disability and 79 cases of substance use disorders (marijuana and alcohol) in their neighbourhood. Based on the participants’ description, doctors examined the clients and found that 67.9% had psychosis and 32.1% had neurosis. Information on community’s perception about mental illness highlighted the lack of awareness about mental illness from a biomedical perspective, belief in supernatural causes and dependence on ‘velichappadu’ (oracles) and ‘mantravadi’ (sorcerers) for recovery. A relatively large proportion of the participants (45%) had no knowledge about mental illness and nearly 22% attributed mental illness to divine will or punishment. While there are sections among tribals who continue to hold on to traditional beliefs, there are people like a tribal chieftain who was clear that mental illness needed allopathic treatment. According to him, ‘In my childhood there was no access to allopathy and so we used traditional medicines for all illnesses. But now I use traditional medicine only for cough, knee pain and back pain. For any other illness I use allopathy. In fact, when I understood that a relative of mine had mental illness I referred him to Gudalur Adivasi Hospital. I feel that the main reason why mental illness returns are because patients discontinue treatment’.

3.4 Empowering the Community: Capacity Building of Tribals as Human Resources in Health In keeping with ASHWINI’s vision of empowering the community to take responsibility for its health needs, capacity building of the staff and volunteers from the villages became the primary focus. Resource persons from National Institute of Mental Health and Neuro Sciences (NIMHANS), Bengaluru; Christian Medical College (CMC), Vellore and King’s College London (KCL) conducted a series of workshop to raise skills of doctors, health animators and hospital staff in identification and treatment of mental illness. Health Animators’ work includes: • Health education programmes in the villages regarding diseases and their prevention, • Screening, • Motivating those who need medical help to seek treatment, • Antenatal care, • Monitoring children below five years of age, • Mental health,

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• • • • • •

Chronic illness monitoring, Maintenance of registers, VHG training, Maintaining Birth and Death Register, ‘Eligible couple’—family planning, Communicating with Accredited Social Health Activist (ASHA) workers and other government staff, • Dispensing medicines and • Follow-up along with the doctors during the Mobile Clinic Visits. The CMHP staff is comprised of 1 doctor (gynaecologist), 15 health animators, 200 health guides, 1 social worker, 1 driver for the mobile clinic and 1 data entry operator. One coordinator is present but he is not exclusive to the CMHP. The medical officers at the hospital provide pharmacological intervention. The programme does not have a psychiatrist. The components of the CMHP are presented in Appendix Table 3.3.

3.4.1 Training Programmes for Staff In the early years of the CMHP, intensive workshops were held by external resource persons from NIMHANS and CMC Vellore for the staff. The focus of these early workshops was to discuss common psychiatric illnesses, treatment, side effects, conducting simulated exercises of approaching and handling mental health issues, weeding out any misconceptions among the staff related to mental health and clarifying the roles and responsibilities of members at different levels in the team. The resource person from NIMHANS provided two manuals—‘Mental Health Care by Primary Care doctors’ and ‘Manual of Mental Health Care for Health Workers’, which focused on mental healthcare in primary care settings. Later sessions by the psychiatrist from NIMHANS involved evaluation of clients who were already on treatment to demonstrate to the staff, proper interviewing techniques in managing PWMI, methods for eliciting symptoms and side effects of medications. A critical analysis of each client’s treatment regimen was done and treatment plans were made. Training specifically for mental health by external resource persons was discontinued after the first 3-year period of the CMHP. The doctors though have continued to learn from the psychiatrists who occasionally come to evaluate their clients. Exposure visits are organised for the staff to other Mental Health Organisations, for example, in December 2005 the field staff went to The Banyan, Chennai.

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3.4.2 Training Programmes for Village Health Guides The training sessions for the VHGs are planned keeping in mind the knowledge level and cultural belief of the group. Although the mandate for the training of VHGs is with the Health Animators, preparation of the curriculum and schedule is done jointly with the doctors and coordinator of the community health programme. In the initial months of the CMHP, the coordinator or doctors were involved in the training, and they did so until the health animators were confident enough in handling the mental health training sessions by themselves. A training manual for lay health workers has been developed by ASHWINI. The manual explains why intervening in mental illness is important. It starts by discussing the concept of being healthy—which means having a sound body, a sound mind and social well-being. The rationale for expanding health outreach from maternal deaths, tuberculosis, anaemia and diarrhoea to mental illness is explained with high suicide mortality emerging as a public health problem among tribals. Given the link between suicides and mental illness, it is important to realise that with treatment, people get better and will not die prematurely. The VHGs have a deep connection with the tribal community, as they themselves are tribals. Hence if they identify a person with mental illness, they must try and persuade their community members to take psychiatric treatment. The manual also guides VHGs on how to encourage a PWMI to accept treatment. It states that PWMI should be treated with respect. Simple and easily identifiable symptoms like talking to self, suspiciousness about family members without reason, crying without reason, talks of committing suicide, thinking that he/she is possessed by a spirit are discussed with VHGs. The manual also discusses different types of mental illness, their symptoms, treatment and side effects of medicines. It also clarifies commonly occurring doubts that VHGs may have about mental illness. Village Health Guides training occurs usually once per month and mental health is included along with other health issues in the training. Once or twice a year, a VHG training camp is held at GAH for a period of 2 days. The methods employed in the training include analysing typical cases, role-play and viewing of video clips of clients before and after treatment. Small skits of village situations and video recordings are also viewed during these sessions. The VHGs and health animators share their experiences and stories of success or failure in handling clients in their own villages. Situations of failure/helplessness are analysed and solutions are worked out together by the team. The VHGs who were trained during the initial 3 years (2005–08) of the CMHP were evaluated at the end of their training.

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3.4.3 Training Programmes for ACCORD and Viswa Bharati Vidyodaya Trust Staff The ACCORD and Viswa Bharati Vidyodaya Trust (VBVT, which runs educational programmes for tribals at Gudalur) staff were also educated in the early years of the CMHP, on the basic concepts of mental health and issues related to mental illness. This was because the multisectoral team comprising of health animators, social animators and education coordinators are involved in conducting health education sessions for the community. The staff across these sectors is also involved in managing PWMI at their area/village level.

3.4.4 Training and Capacity Building Needs The founders of ASHWINI, as well as the health animators and nurses interviewed, spoke of the need to have regular refresher training, especially for the health animators. Since they had obtained only a preliminary training in detecting, treatment and side effects, they opined that further training was needed in these areas. Other areas in which training was needed as specified by them: • • • •

Counselling skills, How to pick up subtle illnesses, Child mental health problems and Training on side effects for new medicines.

3.5 Incorporation of Mental Health into Health Education Programme and Acceptance of Plural Health Seeking Behaviour Mental health awareness was incorporated into the already existing Health Education Programmes being conducted in the villages since 2005. Awareness programmes were conducted using street plays, skits, posters, flip charts, video clippings and powerpoint presentations. The emphasis was to have a holistic approach with discussions about antenatal care, tuberculosis, HIV infection, dental health, mental illness, etc., so that health education on mental illness is mainstreamed. The focus of the Health Education Programmes was on demystification and simplification of mental illness, need for treating mental illness and the importance of community involvement. In these meetings, efforts were made to bring the villagers’ attention to the specific issues of substance abuse, epilepsy and intellectual disability. In later meetings, reallife cases of clients from the same village or from the neighbouring villages who had been successfully treated were shared with the people, recognising that, show-

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casing recovery could be an important communication mechanism. The main issue confronting the programme is the persistence of traditional beliefs and currently, the policy is to accept that the community has plural health-seeking behaviour. As a health animator elucidated, ‘If the caregiver was reluctant to believe that the illness had nothing to do with black magic or evil spirits then I would exhort them to take treatment along with whatever other practices they wanted to engage in’. A client who was on treatment at ASHWINI said he had tried allopathic treatment in the government hospital before a health animator suggested ASHWINI. But he continues to parallelly use faith healing, as he feels that medicines alone do not control his symptoms. One of the health animators spoke about her experience in understanding that mental illness was an illness and that it could be treated came about after she witnessed recovery among clients who were treated. According to her, ‘When the resource person came and taught us, I never believed him. I always thought and was very sure that this illness is because of black magic or because a “mantravadi” has done bad things. I had this belief almost up to a year after the training started. Though I did not believe it, I gave medicines as it was told to me. Then when I saw people changing and being cured I realized that it is nothing to do with evil spirits and black magic’. Emphasising the need for a holistic approach to health education and the impact on the community of seeing clients symptoms being managed, a Health Animator noted, ‘Sometimes we need to talk of all else before we talk about mental illness. Initially people were not interested in what we do. But when people saw some of the patients getting cured and doing well, then they started believing’. A health animator at one of the area centres is also an oracle. It is a hereditary profession for him, as his parents were oracles. In addition to referring persons who he feels might have a mental illness for treatment, if the person and his/her caregiver requests, he also provides faith-healing services. He sees quite a few cases of possession. To drive away from the spirit, he follow a specific ritual. On a banana leaf, he places incense sticks, betel nut leaves, Bengal gram and a coconut and hammers in four nails around it. A cloth knot, which has been blessed and dipped in turmeric is kept in front of the client. Then he exorcises the spirit by threatening to beat it and asks it to look at the leaf. The spirit then leaves the person whom it has possessed. Village meetings were conducted by the ACT, as they were known to villagers for several years and were trusted. Many of these meetings, especially in big villages, were held in the evenings when all the people had returned from work and would last for an hour. Describing the difference in holding village meetings then and now, the team member said, ‘Earlier, we used to give Health education during mobile van visit to villages. We also used to arrange village level meetings. Now it has become difficult since the villagers are either drunk or are watching television, which has been provided free. Now we organise health education in Sangam meetings’. Specific health education programmes targeting youth, school students and school teachers were also conducted. On some occasions, youth camps were held wherein inputs were given regarding life skills and mental health was a component in the training. During the period 2008–12, 153 awareness programmes have been conducted. It

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is important to note that tribals do not discriminate or isolate persons with mental illness. According to the doctor, ‘The community here is very supportive and not discriminative. Since the community is strong the patients get support’. A VHG states that ‘The response of the community towards individuals with mental illness in my village is good. If someone is sitting silent, then they try and talk to him and make the person feel better. If they come to know that he is sick, then they support him. For e.g. A family in the village had all members with psychosis. The villagers would provide them food and support’. One of the VHGs is also a traditional healer. As a healer and a health guide, she focuses on both the physical and mental health of the people in her village, and based on her understanding administers herbal medicines or basic allopathic treatment. She also follows up on those who are already on medication. According to her, ‘For any illness I first call on the Supreme/God and if need be, then takes patient to the doctor. The Supreme tells me if this will be cured by herbal medicines or need to take to the doctor. This message comes to me in my mind. I inform the Health Animator when she observes anyone in her village having symptoms of mental illness. I find medicines effective in treating mental illness and observes that to treat mental illness one needs to see God and take treatment’.

3.6 How Are Persons with Mental Illness Identified in the Community? During health education meetings, health animators request the villagers also to identify PWMI and inform the VHGs. Persons who were found wandering in the area were easier to identify. For instance, Kunji (name changed to protect identity) was found wandering by VHGs and was immediately referred for treatment. Any visibly unwell person gets identified and referred for treatment. Village Health Guides identify and refer persons with mental and physical illness to the area centre. They telephonically convey information about a newly identified client to the health animator. Once the client is referred to the area centres, the health animator gives a referral slip to the individual to meet the doctor in either the area centre, or during mobile clinic visit or at GAH. In emergencies when the client cannot be taken to the hospital, the health animator contacts the doctor telephonically and the doctor prescribes medication over the telephone if it is warranted. In some instances, VHGs accompany the client to GAH. A referral follow-up book is maintained in each of the area centres, which maintains a record of whether the client visited the doctor as scheduled. The health animator makes an entry in this register after doing a home visit or discussing with the VHG or the doctor.

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3.7 Pharmacological Interventions Through Outpatient Clinics and Inpatient Services The CMHP is not a programme that is implemented in isolation from general healthcare; rather it has been integrated into the area centres and Gudalur Adivasi Hospital without using specialist mental health professionals (psychiatrist, psychologist). Persons with mental illness are treated no differently from a person with physical illness, with no distinct cadre or clinic to treat them. ASHWINI charges a user fee of Rs. 10 for outpatient consultation and medication, while inpatient treatment is free. During the period, 2005–08, the CMHP was funded by the Sir Ratan Tata Trust (SRTT) as a separate project, but subsequently, it was funded as a component of the community health programme. Area Centre Teams play an important role in planning, implementation and monitoring of health programmes. There is a three-stage referral system, with Village Health Guides (VHGs), health animators and GAH. Village Health Guides are the point of the first contact for the community. They are tribals who have volunteered to do health-related work in their villages without any monetary reward. They identify and refer health complaints to health animators, who in turn refer to GAH for evaluation by the doctor. After a clinical evaluation, clients are referred back to the area centres for follow-up care. Health animators coordinate the community health programme in the villages under their area centre. Health animators are highly motivated towards the cause of tribal welfare. According to one health animator, ‘When I joined in the early nineties, tribals were not given good care in the government and private hospitals, with some doctors even refusing to examine tribal patients. The tribals were afraid to go to these hospitals. I felt that I would help the community by being a part of the health programme’. The outpatient clinic at GAH functions on 6 days a week for tribals and for non-tribals it is open twice a week. For clients with mental illness, a case history is taken by the doctors and nurses, as nurses are able to elicit information. Nurses psychoeducate clients and caregivers on mental illness and medication. Information about the client is recorded in a Mental Health Register which has details like name, area, Sangam number, age, gender, tribe, marital status, presenting complaints, history of presenting illness, symptoms, past psychiatric history, past medical history, family history, use of drugs/alcohol, personal history, Mental Status Examination (MSE), physical examination, investigation, diagnosis, medications, management plan, follow-up. Some of the information from the register like name, area centre, sangam number, age, gender, tribe, date of enrollment, diagnosis and treatment status is transferred to a spreadsheet database (Mental Health Patients Database). Once a client is started on psychiatric drugs in the OPD, it is immediately conveyed to the health animator of the area centre to ensure regular follow-up of the client at the village level. At the pharmacy, medicine issue is tracked in a register called Pharmacy OPD Medicine Issue Register, which has details on date, bill number, doctor’s name, patient’s name, medicine name, quantity, batch number and expiry date. The area centre maintains an OP register, which has details on the name of patient, area, age,

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sex, tribe, insurance number, diagnosis and amount paid. The stock register at the area centre contains information for each medicine and dosage, date, the opening stock, expiry date, quantity received, cost, closing balance. Counselling services, which were a recent development are provided for those patients who need it. Alcoholics Anonymous (AA) conducts meetings at the GAH once every week though there is poor representation of tribal clients. A tribal chieftain we spoke to had identified alcoholism as one of the major challenges that tribals face currently. He felt that with relatively high wages for casual work, alcohol has become affordable for tribal workers. It has become prevalent among women and children as well. To address this problem, ASHWINI must appoint at least two people in each locality to act like a protective fence against alcoholism. A Tamil Nadu State Aids Control Society (TANSACS) counsellor who is posted at GAH also counsels clients with mental illness (depression and anxiety), who are referred by the doctor as well as walk-in clients. The first session lasts for nearly 20–30 min and clients are requested to attend follow-up sessions. The counsellor reported that providing a non-judgmental space to clients is important. He uses an assessment tool for clients with depression so that he can address symptoms reported by clients. In the case of clients who report negative thoughts and have lost interest in life, he talks about the meaning of life to them. He encourages them to talk about their interests and focus on hope. He finds that most of his clients are women. Information on socio-demographic characteristics of clients of CMHP, ASHWINI presented in Table 3.1 indicate that majority were females (62.9%). A larger proportion of clients belonged to the age group 30–44 and 15–29 years, which fall in the working age group. More than half of the clients belonged to the Paniya tribe (59%), followed by Kattunaickens (18.8%). A relatively larger proportion of the clients were from Devarshola (17.6%), Srimadurai (15.1%) and Gudalur (14%), and the rest were more or less equally distributed among the other five area centres. Information on the diagnostic categories of the clients reveals that a larger proportion of clients were diagnosed with depression (40.9%), psychosis (35.3%) and epilepsy (18.5%) Given that the CMHP was initiated in response to suicides among the tribal community, the presence of a larger proportion of clients with depression point to the need for regular follow-up services. The database shows that the diagnostic pattern was not the same for males and females, as most males are diagnosed with psychosis, while most females are diagnosed with depression. Although the staff spoke about the emerging problem of substance use disorders (addiction to alcohol and marijuana) among tribals, less than one per cent of the clients enrolled with CMHP are diagnosed with substance use disorders. According to the founders, tribals with substance use issues do not utilise the CMHP. It could be because of stigma or refusal to accept it as a mental health issue. In fact, ASHWINI could not proceed with a survey on the use of alcohol in the community in 2011–12, as there was poor cooperation from the community and hesitation on part of the team. When TTK Foundation had tried to work with ASHWINI on deaddiction, tribals did not enrol for the programme. However, a few tribals have recently enrolled with Alcoholics Anonymous, which has initiated work with ASHWINI.

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Table 3.1 Percentage distribution of clients of CMHP, ASHWINI by socio-demographic characteristics and diagnosis, 2005–2012 Socio-demographic characteristics

Percentage distribution

1. Gender

Male

37.1 (162)

Female

62.9 (275)

Total

100.0 (437)

0–14

7.6 (33)

15–29

30.4 (133)

30–44

32.7 (143)

45–59

20.1 (88)

2. Age group (in years)

3. Scheduled Tribe categories

4. Diagnosis

60+

5.9 (26)

Not recorded

3.2 (14)

Total

100.0 (437)

Paniya

59.0 (258)

Kattunaicken

18.8 (82)

Bettakurumba

13.5 (59)

Mullukurumba

5.0 (22)

Irula

0.9 (4)

Not recorded

2.7 (12)

Total

100.0 (437)

Depression

40.9 (177)

Psychosis

35.3 (153)

Epilepsy

18.5 (80)

Neurosis

4.8 (21)

Substance use disorder

0.5 (2)

Total

100.0 (433)

Note Figures in parenthesis are absolute numbers; diagnosis was not available for 4 clients Source Calculated from ASHWINI OP database

Figure 3.1 shows that there is a consistent decline in the number of clients enrolling for treatment between 2005 and 2012. Nearly one-third of enrollments have taken place in 2005, the year in which the programme was initiated. There is a marked drop in enrollment within just a year of starting the programme. After the initial years, ASHWINI has not held capacity building programmes exclusively on mental health, which assumes importance given that Health Animators’ and VHGs’ core area of work is not mental illness. So, the transfer of knowledge to newly appointed staff have probably not happened at the desired level. A staff mentioned that there should be periodic training programmes like the ones conducted during 2005–2008, so that new recruits understand mental illness. Awareness programmes also do not focus only on mental health; rather it is part of health education. Another reason for the decline could be that in the first year, clients who had been undiagnosed

35.0

83

33.0

Percentage

30.0 25.0 20.0

16.2

15.0

9.9

9.9

10.0

9.6

6.9

8.3

6.3

5.0 2012

2011

2010

2009

2008

2007

2006

0.0 2005

Fig. 3.1 Percentage distribution of ASHWINI CMHP OP clients by year of enrollment, 2005–12. Source Calculated from CMHP database

Percentage distribution of clients

3.7 Pharmacological Interventions Through Outpatient Clinics …

Year of enrollment

and not medically treated were identified and treated. Subsequently, the project has witnessed identification earlier, as clients were referred within a short span of onset of mental illness as VHGs were trained to detect behavioural changes. Clients in need of acute care are referred to GAH by the health animator. Occasionally, if required, the VHG stays with the client at GAH and the health animator visits the client, particularly if the client had been reluctant to get admitted. During the client’s stay in the hospital, caregivers are educated regarding the nature of the illness, medication, importance of follow-up and compliance with care. At GAH, admissions for all illnesses are tracked in family folders and a computerised database is maintained. GAH has been provided a grant by the government to subsidise inpatient care and hence, they do not levy bed charges.

3.8 Preventing Drop out Through Follow-up Services Follow-up services are provided by ASHWINI through home visits by health animators and VHGs and mobile clinic visits by the medical team. Village Health Guides based at the village follow-up with the client regularly and if needed, home deliver medicines and update the health animator regarding the status of clients in the village usually once a month either through direct contact or telephonically. The focus of follow-up is to check the client’s symptom level, social and occupational functioning, medicine compliance, food intake and sleep habits. The health animators and VHGs motivate the client to be engaged in some work and provide psychoeducation to the family. In the case of clients who drop out of treatment, the health animator continues to follow them up to check if they are worsening and attempts to motivate them to get back to treatment. If need be, the health animator talks to the neighbours to motivate the client to get back to treatment. The mobile clinic visits happen once a month to all sangam villages and the health animators

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Fig. 3.2 Percentage distribution of ASHWINI CMHP clients by follow-up status across gender, 2012. Source Calculated from CMHP database

Percentage distribution

of the area centre accompany the doctor in these visits. Occasionally, ASHWINI conducts reviews of clients by psychiatrists, whenever they note that the progress of certain clients is not satisfactory. The health animators enter follow-up related information into the Mental Health Card (colour coded), which is stored in the area centre. The card has a three-point scoring system (normal, less and poor) which tracks client’s progress on a monthly basis on sleep, appetite, hygiene, work, social norms, cooperation, hallucination/delusion, depression, elation, alcohol/drug abuse, suicidal intentions, violence, fits, medicine intake, side effects. The entries that are made in the card are passed onto the main GAH register when the desk review is conducted once in a quarter, which is attended by health animators of all area centres. In these meetings, the doctors review the symptom status of each patient and decide if there is a need to change medications. A ‘Chronic Register’ is also maintained in the area centres, which has details on attendance for clients’ chronic diseases, including mental illness. The purpose of the register is to maintain a record of whether the client is on follow-up and is being given treatment. The follow-up data is maintained in the CMHP OP database, though details have not been recorded for a large number of epilepsy clients. ASHWINI does exceedingly well in minimising drop out as shown in Fig. 3.2. At follow-up, only 26% of CMHP clients had dropped out from treatment, 35.9% of clients were regularly taking treatment and 24.4% had been discharged from treatment on medical advice.1 It is important to note that VHGs conduct home visits to clients who have dropped out. Nearly 13.7% of the clients had expired and when this data is disaggregated by age, it is seen that 38.8% of them belonged to the age group 30–44 years and 26.5% to the age group 45–59 years. As the cause of death data is not available, we cannot draw any conclusion about a relatively large proportion of deaths among those in the 30–44 year age group. Even if the age data pertains to age at the time of enrollment and given that most deaths have taken place 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0%

26.5 17.4 22.7

33.3 Male

25.7

26.0

11.6

13.7

25.3

24.4

37.3

35.9

Female

Total

Gender

1 Data

Drop out

Death

Discharged from treatment

Regular

on follow-up status is not recorded for 64 clients, mainly in case of epilepsy.

3.8 Preventing Drop out Through Follow-up Services Table 3.2 Percentage distribution of clients of CMHP, ASHWINI by reason for drop out from treatment, 2005–12

85

S. no.

Reason for drop out

Percentage distribution

1

Migrated

33.0 (32)

2

Not specified

55.7 (54)

3

No white card

5.2 (5)

4

Poor drug compliance

1.0 (1)

5

No improvement

1.0 (1)

6

Other

4.1 (4)

Total

100.0 (97)

Note Figures in parenthesis are absolute numbers Source Calculated from CMHP database

among clients enrolled in the years 2005 and 2006, the age at death would still be in the early fifties. Among the reasons for dropping out of treatment, one-third reported that it was due to migration and for a large proportion (56%) reasons for dropping out from treatment were not known (Table 3.2). CMHPs which are located in areas that witness a higher magnitude of labour migration would face challenges in the continuity of care. Among the six clients who were interviewed for this study, three of them were taking their medicines consistently and attending reviews at the OP and one of them was independent in taking medicines. Two of them had discontinued treatment, as side effects were interfering with their work and also because of belief in supernatural causes and black magic. The client who was regular and independent in taking medication was living alone, as her parents had passed away. She was working at a Mahatma Gandhi National Rural Employment Scheme (MGNREGS) work site and stated that she did not experience any difficulty with the earthwork assigned to her. According to her, the importance of drug compliance was communicated to her at GAH. The clients and caregivers interviewed during home visits expressed satisfaction with mental health services being provided by ASHWINI. They had health animators and health guides following them up and would meet the doctor during the mobile clinic visits. They reported family and community support. When queried regarding their expectations from ASHWINI, a few of the responses were: ‘hope to keep getting medicines’, ‘not be charged Rs. 10 for treatment’.

3.9 Restoration of Routine Functioning ASHWINI’s approach to psychosocial rehabilitation focuses on clients getting back to work that they had been involved in before the onset of illness. As most of the clients are manual labourers, they return to work once they are stable or discharged from treatment. Employment support is provided in cases where clients specifically

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request it. For instance, in some cases, Health Animators and VHGs intervene and sensitise former employers to re-employ the client or provide jobs in ACCORD project. For clients who are interested in a source of livelihood, ACT provides milch animals or hens. The health animators report that there was not much demand for employment from clients with mental illness. Information on livelihood support and employment placement is not documented.

3.10 Impact of CMHP The health team comprising health animators, doctors and coordinator meet on a monthly basis to review and evaluate the activities in the programme. Health animators have to submit a monthly report with information on the total number of clients, clients who are regular with treatment and number of home visits conducted. The founder states that one of the impacts of the CMHP has been in improving knowledge about mental illness. Another impact according to the founder, ASHWINI is that the CMHP has managed to reach mental health services to tribals because of which many of them have started to get back to employment. Due to follow-up services offered by the CMHP, drop out rates are minimal. Community ownership is a strong point of the CMHP.

3.10.1 Innovations An evaluation report highlights enthusiasm among all cadres involved in the mental health programme of ASHWINI and considers the involvement of the village health guides in identification and follow-up and use of video documentation of ‘before’ and ‘after’ treatment as innovations (Sridharan 2006).

3.10.2 Awareness on Mental Illness: Improved Knowledge that Psychiatric Disorders Are an Illness, but Persistence of Belief in Faith Healing The evaluation by Sridharan (2006) found that recovery of clients was found to an important factor in improving awareness among the community, VHGs and health animators. Results of another impact assessment reveal that the proportion of respondents who did not have knowledge about mental illness had decreased from 45 to 3% within 3 years of work in the community (ASHWINI 2009). However, explanatory models of mental illness among tribal communities still attribute mental illness to supernatural causes like ‘black magic’, ‘possession’, ‘divine wrath’ and as ‘pun-

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87

ishment for past life misdeeds’, with 37% believing that mental illness is caused by divine wrath and 66% believing that mental illness is caused by ‘sorcery’ after 3 years of programme rollout (ASHWINI 2009). Further, while 85% were aware that GAH provided psychiatric services, more than half of them continued to believe that people have to be taken to temples or sorcerers, indicating pluralistic health seeking practice (ASHWINI 2009). Community understanding of mental illness is one of the factors that influence health-seeking behaviour. Manoharan’s (2006) evaluation on ASHWINI found that amongst the persons from the Adivasi community that he had interviewed, traditional beliefs regarding the causation of mental illness were predominant and that almost all clients who were part of the study had accessed traditional interventions before approaching the CMHP for treatment. He noted that health education programmes by the CMHP to create mental health awareness in the community had not been very active, but the change in the beliefs and attitudes of the health guides was an important first step. According to him, by training more health guides in mental health and sustaining the motivation of all the health staff, there can be a positive impact in terms of changes in the perceptions of mental illness in the community, community support for people with mental illness, early detection of illness and appropriate treatment. The present documentation indicates that ASHWINI has implemented these suggestions and focused on community mental health awareness programmes as well as the training of VHGs. The VHG training occurs usually once per month and mental health is included along with other health issues in the training. An evaluation by Yalsangi (2011) found that community awareness scores were significantly (p-value of