Positive and Inclusive? Effective ways for professionals to involve carers in information sharing Report to the National Co-ordinating Centre for NHS Service Delivery and Organisation R & D (NCCSDO) Autumn 2004 prepared by Vanessa Pinfold, Paul Farmer Rethink severe mental illness Joan Rapaport, Sophie Bellringer, Peter Huxley, Joanna Murray, Sube Banerjee, Mike Slade, Elizabeth Kuipers, Dinesh Bhugra, Samantha Waitere Institute of Psychiatry Address for correspondence Dr Vanessa Pinfold Rethink severe mental illness 28 Castle Street Kingston-Upon-Thames Surrey KT1 1SS E-mail: [email protected] Telephone: 020 8547 9217 © NCCSDO 2005 1 Positive and Inclusive? Effective ways for professionals to involve carers in information sharing Contents Acknowledgements 4 Preface 5 Executive Summary Introduction 8 Literature and policy review 8 Methods 9 Results 9 Recommendations 11 The Report Section 1 Introduction 12 1.1 Contemporary developments 13 1.2 Carer context 14 1.3 Summary 15 Section 2 Policy and literature review 16 2.1 Frameworks governing confidentiality and information sharing 16 2.2 Legislation and policy 19 2.3 International policy and law 24 2.4 Good practice approaches 25 2.5 Summary 31 Section 3 Method 33 3.1 Aims 33 3.2 Study management 33 3.3 Data collection and analysis 34 3.4 Summary 47 Section 4 Policy analysis 48 4.1 Policies received 49 4.2 Supplemental information 49 4.3 Meeting carer needs: policy statements 51 4.4 Good policy models 54 4.5 Summary 58 Section 5 Survey 60 5.1 Introduction 60 5.2 Good practice views from service users 60 5.3 Good practice views from adult carers 68 5.4 Good practice views from professionals 80 5.5 Good practice views from carer support workers 91 © NCCSDO 2005 2 Positive and Inclusive? Effective ways for professionals to involve carers in information sharing 5.6 Contrasting stakeholder perspectives 97 5.7 Summary 104 Section 6 Interviews 105 6.1 Interviews with stakeholders working with mental illness among adults of working age 105 6.2 Interviews with stakeholders working with older adults 118 6.3 Comparing stakeholder views 124 6.4 Summary 127 Section 7 Stakeholder groups 130 7.1 Attitudes and approach 130 7.2 Communication and actions 130 7.3 Services 130 7.4 Training 131 7.5 Summary 132 Section 8 Workshops 136 8.1 Workshop feedback: pro forma 136 8.2 Case vignettes 138 8.3 Good practice implementation and recommendations 142 8.4 Summary 142 Section 9 Effective information sharing 144 9.1 Overview: comparing and contrasting stakeholder views 145 9.2 A basic framework 149 9.3 General principles and attitudes towards carer empowerment 152 9.4 Service structures that support good practice 154 9.5 Good practice strategies 156 9.6 Strategies for specific groups 163 9.7 Strategies when service users withhold consent to share information 163 9.8 Information sharing – final reflections? 166 9.9 Summary 168 Section 10 Next steps 171 References 173 Appendices Appendix 1 Expert panel members 180 Appendix 2 Summary history of carer policy and legislation 181 Appendix 3 National survey: carers’ version 183 Appendix 4 Partnership organisations involved in the study 190 Appendix 5 In-depth interview schedule 191 Appendix 6 Case vignettes used in the workshops 192 © NCCSDO 2005 3 Positive and Inclusive? Effective ways for professionals to involve carers in information sharing Acknowledgements This study is a collaborative project between Rethink severe mental illness (the largest mental health charity in England providing support to 7000 people daily through 380 services and 135 support groups) and the Health Services Research Department at the Institute of Psychiatry. In carrying out the research, the project team has drawn on the support and expertise of an extensive group of people contacted through networks such as Mental Health Alliance, organisations such as Age Concern, Mind and the South London and Maudsley NHS Trust and from individual contacts. This short project would not have been possible without the support of these stakeholders. In addition to developing a network of contacts, the project team formed an expert panel, a virtual network and a virtual panel. The expert panel met on three occasions. It has steered and shaped the project, and been involved in writing this final report. Members of the panel are listed in Appendix 1 and we are grateful for the time, support and encouragement that they provided. The virtual network helped to publicise the study and have also commented on the final report. Again we thank all the virtual network members for their enthusiasm and support. The research data collected for the study has been provided by mental health service users, professionals working in mental health, carers supporting a person with mental health problems and carer support workers. People accessed our surveys online, were interviewed over the telephone, attended workshops or groups hosted by the research team, and sent in policy documents supporting the sharing of information between mental health professionals and carers. We are grateful to everyone who has participated in this national study. Finally the research team would like to recognise the support provided by colleagues in Rethink and at the Institute of Psychiatry. This project has been a team effort – thank you to everyone who has played a part. © NCCSDO 2005 4 Positive and Inclusive? Effective ways for professionals to involve carers in information sharing Preface This research project addresses good practice within mental health for the sharing of information between mental health professionals and carers. Within mental health, the sharing of information between professionals and carers is only one information sharing context. Others include information shared between professionals, and between service users and professionals. There are some common principles governing the sharing of information, and these will be outlined in the report, but there are also distinct practices or strategies that are particularly relevant to information sharing between mental health professionals and carers, the specific focus in this report. It is important from the outset to acknowledge the practical difficulties that can arise when using the term ‘carer’. There is no single definition of a carer (Clements, 1996). This report defines a mental health ‘carer’ as a relative, friend or neighbour who provides practical and emotional support to someone with a mental health problem. A carer may or may not live with the person they support. However, the term carer is controversial. Some carers dislike it because it implies they did not ‘care’ before the person they support became unwell or because it unhelpfully professionalises the relationships. Others do not recognise that the ‘regular and substantial’ support they provide entitles them to specific ‘carer’s rights’ such as carer assessments. When does the role of a mother, father, wife, husband, partner, neighbour or friend end and the role of ‘carer’ begin? Equally there are service users who do not recognise their carers as such and who do not want them involved with their mental health care. The term carer thus encompasses a variety of relationships and caring contexts compounded by legal complexities, such as the criterion for the ‘nearest relative’ (see Section 2.2.3). The context of care is something we will return to throughout the report as a central consideration when professionals decide how to share information with ‘carers’. The government’s commitment to carers includes three strategic elements: the provision of information, support and direct care. In this study we considered the different types of ‘information’ that carers require at times, and share when appropriate, to help them support a person with mental health problems. We also address where information should not be shared with carers, and highlight the central role of service user consent. We have used three different terms to distinguish between different information types: 1. General information for example information in the public domain on mental health problems, available treatments or resource directories for local services © NCCSDO 2005 5 Positive and Inclusive? Effective ways for professionals to involve carers in information sharing 2. Personal information for example specific information relating to the care of the person with mental health problems such as diagnosis, medication types or content of their care plan 3. Sensitive personal information for example information that is of a highly personal nature such as HIV status, history of sexual and emotional abuse or views on relationships with family members. These terms can be broadly defined but how they apply to individual cases may vary because what counts as sensitive information in one scenario, will be considered in another as personal information. Personal and sensitive information is often regarded as confidential information. In Western societies confidentiality in healthcare is of crucial importance because it underpins the development of the therapeutic alliance between the service user and professional. Confidential information is central to this study because the principle of ‘patient confidentiality’ governs how and to what extent professionals share information with carers in mental health. The focus of this study is on examples of good practice in information sharing between mental health professionals and carers. This research investigated good practice by acquiring positive and inclusive examples of how carers are