Review of Independent Mental Health Advocate (IMHA)

292 Pages·2012·2.49 MB·English

The Right to Be Heard
Review of the Quality of Independent Mental Health
Advocate (IMHA) Services in England

Karen Newbigging, Dr Julie Ridley, Dr Mick McKeown, Karen
Machin and Dr Dina Poursanidou
Laura Able, Kaaren Cruse, Paul Grey, Stephanie de la Haye,
Zemikael Habte-Mariam, Doreen Joseph, Michelle Kiansumba and
June Sadd

Research Report

June 2012

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Review of Independent Mental Health Advocate (IMHA) Services

Contents
List of Figures and Tables ..................................................................................................................... vi
Acknowledgements .............................................................................................................................. viii
Abbreviations and Terms ..................................................................................................................... ix
Executive Summary ................................................................................................................................. 1
1. INTRODUCTION ........................................................................................................................... 17
2. BACKGROUND .............................................................................................................................. 20
2.1 Introduction ..................................................................................................................... 20
2.2 Independent Mental Health Advocacy .................................................................. 21
2.2.1 Purpose and role of Independent Mental Health Advocates ........... 21
2.2.2 Qualifying patients ........................................................................................... 23
2.2.3 Provision of IMHA services ........................................................................... 24
2.2.4 Role of mental health services ..................................................................... 24
2.2.5 Commissioning IMHA services .................................................................... 25
2.2.6 Care Quality Commission (CQC) Inspection of the Mental Health
Act .......................................................................................................................... 26
2.3 Current policy context ................................................................................................. 27
2.4 Previous research ........................................................................................................... 27
2.4.1 Statutory mental health advocacy .............................................................. 28
2.4.2 Mapping advocacy needs and/or provision either at a local or
regional level ...................................................................................................... 29
2.4.3 Evaluating mental health advocacy in specific settings ...................... 29
2.4.4 Mental health advocacy for specific populations ................................. 29
2.4.5 Standards and guidelines for the provision of advocacy prior to
2009 ....................................................................................................................... 30
3. STUDY DESIGN AND METHODS ............................................................................................ 32
3.1 Aims and objectives ...................................................................................................... 32
3.2 Scope ................................................................................................................................. 32
3.3 Study design .................................................................................................................... 33
3.4 Research methods ......................................................................................................... 33
3.4.1 Stage 1: Developing indicators of service quality for IMHA services33
3.4.2 Stage 2: Comparative case studies of IMHA services .......................... 36
3.5 Survey of independent sector providers ............................................................... 41
3.6 Study participants ......................................................................................................... 42
3.6.1 Focus group participants ............................................................................... 42
3.6.2 Case study participants .................................................................................. 43
3.7 Data analysis and synthesis ....................................................................................... 47
3.8 Research team ................................................................................................................ 48
3.9 Stakeholder involvement ............................................................................................ 49

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3.9.1 Project Advisory Group .................................................................................. 49
3.9.2 Service User Reference Group ..................................................................... 49
3.9.3 Stakeholder Panel ............................................................................................. 50
3.10 Ethical considerations .................................................................................................. 50
3.11 Methodological and practical challenges ............................................................. 51
3.11.1 Participant recruitment ................................................................................... 51
3.11.2 Information on IMHA activity and impact ............................................... 54
3.12 Limitations ........................................................................................................................ 54
4. EXPERIENCES OF QUALIFYING PATIENTS .......................................................................... 57
4.1 Introduction ..................................................................................................................... 57
4.2 Service user experience and issues ......................................................................... 57
4.2.1 Experiences of the Mental Health Act ....................................................... 58
4.2.2 Experiences of mental health services ...................................................... 62
5. ACCESS TO IMHA SERVICES .................................................................................................... 66
5.1 Introduction ..................................................................................................................... 66
5.2 Use of IMHA services ................................................................................................... 66
5.3 How people access IMHA services .......................................................................... 72
5.3.1 Finding out about IMHA services ............................................................... 72
5.3.2 Timing ................................................................................................................... 79
5.4 Making contact with IMHA services ....................................................................... 80
5.5 Referral to IMHA services ........................................................................................... 81
5.5.1 Source of referrals ............................................................................................ 81
5.5.2 Reasons for referral .......................................................................................... 83
5.5.3 Timing of referral and speed of response ............................................... 85
5.6 Reasons for not using IMHA services..................................................................... 86
5.7 Missed opportunities ................................................................................................... 87
5.8 Equity of access .............................................................................................................. 88
5.9 People placed out of their area of residence ...................................................... 90
5.10 Informal patients ........................................................................................................... 90
5.11 Factors influencing uptake of IMHA services ...................................................... 90
5.11.1 Understanding of the purpose of IMHA services and the role ........ 91
5.11.2 Availability of IMHA services ........................................................................ 91
5.11.3 Promotion by mental health services ........................................................ 91
5.11.4 Receptiveness of qualifying patients ......................................................... 92
5.11.5 A tangible commitment to equality of access ....................................... 93
6. UNDERSTANDING OF IMHA SERVICES ............................................................................... 95
6.1 Introduction ..................................................................................................................... 95
6.2 The purpose of IMHA .................................................................................................. 95
6.3 Understanding the role and remit of IMHA services ........................................ 99
6.4 Confusion about IMHA services, their purpose and role ............................. 101

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6.5 The mental health professional role and advocacy ....................................... 104
7. IMHA SERVICE LANDSCAPE ................................................................................................. 109
7.1 Introduction .................................................................................................................. 109
7.2 Profile of IMHA providers ........................................................................................ 109
7.2.1 Provider type ................................................................................................... 109
7.2.2 Type of advocacy service provided ......................................................... 110
7.2.3 Number of services providing IMHA ...................................................... 111
7.2.4 IMHA team sizes ............................................................................................ 113
7.2.5 IMHA and IMCA ............................................................................................. 114
7.2.6 IMHA and generic advocacy ...................................................................... 114
7.3 Ethos of IMHA services ............................................................................................. 116
7.4 IMHA staff ..................................................................................................................... 118
7.4.1 Individual characteristics of IMHAs ......................................................... 118
7.4.2 Personal qualities ........................................................................................... 121
7.4.3 IMHA training and knowledge ................................................................. 122
7.4.4 IMHA skills........................................................................................................ 123
7.5 Caseload size and allocation .................................................................................. 125
7.6 Monitoring and review ............................................................................................. 127
8. PROVISION OF IMHA SUPPORT ......................................................................................... 131
8.1 Introduction .................................................................................................................. 131
8.2 The IMHA and partner relationship ..................................................................... 131
8.3 A complex role............................................................................................................. 133
8.4 Dilemmas with IMHA role ....................................................................................... 134
8.5 Key role in providing information ........................................................................ 135
8.6 IMHA role at meetings ............................................................................................. 136
8.6.1 Care Programme Approach (CPA) Meetings ....................................... 136
8.6.2 Mental Health Review Tribunals............................................................... 138
8.6.3 Managers’ Meetings/Hearings ................................................................. 140
8.6.4 Ward rounds/MDT meetings .................................................................... 141
8.7 Accessing patient records ....................................................................................... 143
8.8 Advance Directives ..................................................................................................... 145
8.9 Non-instructed advocacy ........................................................................................ 146
8.10 Relationship with Safeguarding ............................................................................ 149
9. IMHA SERVICES AND THE DIVERSITY OF QUALIFYING PATIENTS ......................... 151
9.1 Introduction .................................................................................................................. 151
9.2 Provision for children and young people .......................................................... 151
9.3 Provision for older adults ........................................................................................ 153
9.4 Provision for people from BME communities .................................................. 154
9.5 Gender sensitive provision ...................................................................................... 160
9.6 Provision for Lesbian Gay Bisexual and Transgender (LGBT) people ...... 160

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9.7 People with learning difficulties ............................................................................ 161
9.8 People with physical disabilities and/or sensory impairment .................... 162
10. THE MENTAL HEALTH SERVICES CONTEXT .................................................................... 164
10.1 Introduction .................................................................................................................. 164
10.2 Practical facilitation of advocacy ........................................................................... 164
10.3 Building relationships over time ........................................................................... 167
10.4 Positive relationships with IMHA services ......................................................... 169
10.5 Boundaries and independence .............................................................................. 171
10.6 Negative relationships .............................................................................................. 174
10.7 Resistance and conflict in relationships ............................................................. 178
10.8 Effective working relationships .............................................................................. 180
10.9 A framework for analysing the relationship between mental health
services and IMHA ..................................................................................................... 182
11. MAKING A DIFFERENCE ......................................................................................................... 186
11.1 Overview ........................................................................................................................ 186
11.2 Satisfaction with IMHA ............................................................................................. 186
11.3 Impacts of IMHA ......................................................................................................... 190
11.3.1 Process............................................................................................................... 192
11.3.2 Outcomes ......................................................................................................... 197
11.4 Measuring Impact ...................................................................................................... 202
12. COMMISSIONING IMHA SERVICES ................................................................................... 206
12.1 Introduction .................................................................................................................. 206
12.2 Introduction of IMHA services ............................................................................... 206
12.3 Commissioning arrangements ............................................................................... 207
12.4 Needs assessments .................................................................................................... 208
12.5 Service specifications ................................................................................................ 210
12.6 Investment in IMHA services .................................................................................. 211
12.7 Tendering and contracting ..................................................................................... 213
12.8 Monitoring arrangements ....................................................................................... 215
12.9 Commissioning for people placed out of area ................................................ 217
12.10 Commissioners’ understanding of IMHA ........................................................... 218
12.11 Commissioning a whole system approach to advocacy .............................. 219
12.12 Commissioning mental health services to support IMHA services .......... 220
12.13 Commissioning for quality IMHA service in the future ................................ 221
13. QUALITY OF IMHA SERVICES ............................................................................................... 224
13.1 Introduction .................................................................................................................. 224
13.2 A framework for the quality indicators for IMHA services .......................... 224
13.3 Quality indicators for IMHA services ................................................................... 225
13.3.1 Effective Commissioning ............................................................................. 226
13.3.2 Availability and access to IMHA services .............................................. 228
13.3.3 IMHA Service Characteristics ..................................................................... 229

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13.3.4 Organisation and management of IMHA services ............................ 230
13.3.5 The IMHA role ................................................................................................. 231
13.3.6 Meeting diverse needs ................................................................................ 232
13.3.7 Monitoring the outcomes of IMHA services........................................ 232
13.3.8 The mental health services context ......................................................... 233
14. DISCUSSION ............................................................................................................................... 235
14.1 Introduction .................................................................................................................. 235
14.2 Accessibility of IMHA services ................................................................................ 235
14.3 Appropriate support from IMHA services ......................................................... 239
14.4 Effectiveness of IMHA services .............................................................................. 241
14.5 The critical nature of the relationship with mental health services .......... 243
14.6 Practice and policy implications ............................................................................ 244
14.7 Future research ............................................................................................................ 246
15. CONCLUSION AND RECOMMENDATIONS .................................................................... 247
15.1 Recommendations for government..................................................................... 247
15.2 Recommendations for the Care Quality Commission ................................... 249
15.3 Recommendations for commissioners ............................................................... 249
15.4 Recommendations for mental health services ................................................. 250
15.5 Recommendations for IMHA services ................................................................. 251
15.6 Recommendations for service user, carer and community organisations252
15.7 Recommendations for Higher Education Institutions and training
providers ........................................................................................................................ 252
16. APPENDICES ............................................................................................................................... 253
Appendix 1: Members of the Project Advisory Group ................................................ 254
Appendix 2: Members of the Service User Reference Group ................................... 255
Appendix 3: Stakeholder Panel ........................................................................................... 256
Appendix 4: Papers reviewed for the focused literature review .............................. 257
Appendix 5: Overview of the Case Study Sites .............................................................. 261
Appendix 6: Overview of case study process ................................................................. 265
Appendix 7: Sampling Frame ............................................................................................... 266
Appendix 8: Profile of qualifying patients ....................................................................... 267
Appendix 9: Commissioning IMHA services ................................................................... 270
References ............................................................................................................................................. 272

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List of Figures and Tables
Figures
Figure 1: The role of IMHAs............................................................................................................... 22
Figure 2: Contact with mental health services ............................................................................ 47
Figure 3: Experience of detention under the MH Act .............................................................. 47
Figure 4: Number of people referred to and using IMHA services by case study site 66
Figure 5: Number of detained patients in the urban and rural case study sites
between 2008 and 2011 ..................................................................................................................... 67
Figure 6: Sources of referrals to IMHA services ......................................................................... 81
Figure 7: Missed opportunities for referral to IMHA services from mental health case
note analysis ........................................................................................................................................... 88
Figure 8: Comparison of expected and actual uptake of IMHA services by qualifying
patients from BME communities in Site A for 2010-2011 ...................................................... 89
Figure 9: Type of area where IMHA providers operated ..................................................... 110
Figure 10: Range of advocacy provided by advocacy services providing IMHA ........ 111
Figure 11: Case Vignette – Solving the problem of off-ward leave ................................. 171
Figure 12: The impact of mental health professionals’ understanding and disposition
to independent mental health advocacy on their relationships with IMHA services 183
Figure 13: Case Vignette – Finding My Voice .......................................................................... 201
Figure 14: Dimensions of quality for IMHA services ............................................................. 224
Figure 15: Data collection process in the case study sites .................................................. 265

Tables
Table 1: Recruitment methods used in each case study site................................................. 41
Table 2: Overview of focus group participants ........................................................................... 43
Table 3: Overview of participants by case study site ............................................................... 45
Table 4: Percentages of qualifying patients who were detained or on a CTO who were
using IMHA services in 2010-2011 ................................................................................................. 68
Table 5: Characteristics of IMHA partners 2010-2011 in the case study sites ................ 69
Table 6: Reasons for referral rank ordered by referral source .............................................. 84
Table 7: Understanding of mental health staff in the case study sites of the IMHA role
.................................................................................................................................................................. 100
Table 8: Number of IMHA providers identified in each case study site ......................... 112
Table 9: Numbers of paid advocates and IMHAs in the case study sites ...................... 114
Table 10: Summary of identified impacts of IMHA in relation to process and
outcomes .............................................................................................................................................. 192
Table 11: Six personal outcomes of instructed mental health advocacy including
IMHA ....................................................................................................................................................... 203
Table 12: Estimated number of qualifying patients 2009- 2011 ....................................... 210
Table 13: Description of the case study sites ........................................................................... 264

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Table 14: Sampling frame used to identify potential service user participants........... 266
Table 15: Age of service user participants in the case study sites .................................... 267
Table 16: Ethnic origin as defined by service user participants in the case study sites
.................................................................................................................................................................. 268
Table 17: Disabilities identified by service user participants in the case study sites . 269
Table 18: Summary of the IMHA commissioning arrangements in the case study sites
.................................................................................................................................................................. 271

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Acknowledgements
We are deeply grateful to those individuals and organisations that have supported
this work. We are particularly grateful to the mental health service users who shared
their experiences with us and who gave their time so generously to help us with our
research. This study would not have been possible without the active participation of
the IMHA services and we are indebted to those individuals and services that helped
with this research. We would like to thank Collette Byrne, Action for Advocacy; Julian
Christopher, Equalities National Council, Polly Falconer, the Afiya Trust, Ramesh
Kanani and Zulekha Dala, Aawaz for their particular support with this. We would also
like to thank the Mental Health Trusts, PCTs and local authorities that participated in
the case studies but necessarily remain anonymous: we are grateful to all the staff
that we interviewed for their time and helpful insights. We are also indebted to the
Clinical Studies Officers, who helped us with the recruitment of participants.
We are grateful to members of the Service User Reference Group and the Project
Advisory Group who have given generously their time and advice. Our special thanks
go to Professor Chris Heginbotham, who chaired the Advisory Group for his
contribution and on-going support.
We would also like to thank Laura Buckley, Dr Nina Grant and Emma Hawkesford for
research support; Carmit Erez for administrative support, and Anne Rennie and Anne-
Marie Baugh, who provided efficient transcription services.
Finally, we would like to thank the Department of Health for initiating this project
and funding our work. This is an independent report commissioned and funded by
the Policy Research Programme in the Department of Health. The views expressed
are not necessarily those of the Department.
A note on terminology
Participants used a range of terms to refer to people using IMHA services. These
included 'patient', 'client' and 'service user’ and ’survivor’ and we have left these in
the quotes as expressed by participants.
We have used the terms 'qualifying patient' to describe those people entitled to
access IMHA services, and we describe those qualifying and using IMHA services as
the 'advocacy partner' or the 'IMHA partner'. We use the term 'service users' to refer
to people who use mental health services in general, including those who do not
qualify for IMHA services. We use the term 'carer' to refer to family members and
friends who have specific caring responsibilities in relation to a service user.

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Abbreviations and Terms
Advocacy partner Qualifying patient using IMHA services
or IMHA partner
AMHP Approved Mental Health Professional
Best interests Making a judgment, on behalf of someone who lacks capacity,
about their best interests
BME Black and minority ethnic
CAMHS Child and Adolescent Mental Health Services
CMHT Community Mental Health Team
CPA Care Programme Approach
CPN Community Psychiatric Nurse
CQC Care Quality Commission
CSO Clinical Studies Officer
CTO Community Treatment Order
DOLS Deprivation Of Liberty Safeguards: safeguards for people
deprived of their liberty but not covered by the Mental Health
Act 1983 safeguards
ECT Electroconvulsive Therapy
ENC Equalities National Council
Equality analysis An analysis of the effect of policies on different groups protected
from discrimination by the Equality Act 2010
Equality impact A method for examining the main functions and policies of an
assessments organisation to see whether they have the potential to affect
people differently and to enable an organisation to address
existing or potential inequalities.
FTE Full Time Equivalent
ICAS Independent Complaints Advocacy Service
IMCA Independent Mental Capacity Advocate: a statutory advocate,
introduced by the Mental Capacity Act 2005, to safeguard the

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