Healthy Democracy The future of involvement in health and social care Edward Andersson, Jonathan Tritter and Richard Wilson (Editors) Healthy Democracy The future of involvement in health and social care © Involve and NHS National Centre for Involvement Involve 212 High Holborn London WC1V 7BF 020 7 632 0120 [email protected] www.involve.org.uk Contents Contents I Acknowledgments III A note on contributors V Foreword Rosie Winterton IX Introduction Edward Andersson, Jonathan Tritter and Richard Wilson 1 Overview: does Patient and Public Involvement matter? 5 Edward Andersson, Stella Creasy and Jonathan Tritter Theory and overviews 19 1. Patients as entrepreneurs: who is in charge of change? 19 Harry Cayton 2. Patient engagement: why is it important? 27 Angela Coulter 3. What is so good about citizens’ involvement in healthcare? 37 Albert Weale Structures in healthcare 45 4. Supporting involvement: the new NHS Centre for Involvement 45 Jonathan Tritter and Ian Brittain 5. The role of citizens and service users in regulating healthcare 53 Anna Coote 6. A new vision for local democratic accountability of healthcare services 67 Jane Martin II Contents Beyond the NHS 75 7. The role of the voluntary sector within involvement in health 75 Belinda Pratten 8. Partners in participation? Involving people who use social care services 83 Frances Hasler Involvement in Primary Care 95 9. Patient and Public Involvement and Practice Based Commissioning 95 Brian Fisher 10. Public and Patient Participation in Primary Care: a Golden Age? 107 Graham Box New Innovations 115 11. Foundation Trusts and Patient and Public Involvement 115 Sue Slipman 12. Creating reputations: Involvement beyond exit and louder than voice 121 Paul Hodgkin Appendix A 132 Selected milestones in Patient and Public Involvement Appendix B 134 A Glossary ofterms Acknowledgements Involve and the National Centre for Involvement would firstly like to thank all the authors who have given generous amounts of their time and ideas to make this publication possible. In addition we would like to thank Alice Casey and Gail Emerson for their com- ments on the chapters, Tim Balaam and Fabienne Erni of Headshift for the de- sign, and to Matthew Creasy for copyediting the publication. Edward Andersson and Richard Wilson would like to thank Bette Baldwin and Diane Warburton for their ever-helpful advice. Involve is also grateful for the finan- cial support that the Commission for Patient and Public Involvement in Health provided in the early stages of Involve’s health programme. Numerous individu- als have shared their experience of involvement in the NHS with Involve, particu- lar mention should go to Mary Adams, James Cavanagh, Bob Sang, Michael Shepherd, Cath Sisson and Trish Turner. Jonathan Tritter would like to thank David Gilbert, David Pink, Jane Martin, Jill Brunt, Ian Brittain and Sandy Sparks, whom have all played an invaluable role in making the NHS Centre for Involvement a reality. IV A note on contributors Edward Andersson is a researcher at Involve, with a special focus on health involvement. He currently advises the OECD on participatory budgeting and is active in a number of civic engagement and participation networks in the UK and abroad. Dr Graham Box is Chief Executive of the National Association for Patient Participation. His previous experience includes NHS management and man- agement consultancy in Brussels and Lisbon. Graham has a Doctorate from Oxford University where he studied policy responses to lifestyle illness. He also lectured in politics at Oxford where he specialised in political philosophy and comparative government. Ian Brittain is Director of Communications at the NHS Centre for Involvement. Having previously worked as Director of Communications for two Primary Care Trusts, Ian co-developed an interactive DVD and CD-ROM designed to help facilitate different ways to consult with patients and the public. He was also in- volved in the implementation of ‘Shadow’ Patients Forums and is a member of the Chartered Institute of Public Relations. Harry Cayton is National Director for Patients and the Public at the Department of Health. He is advisor to a number of voluntary organisations and has been chief ex- ecutive of both the Alzheimer’s Society and of the National Deaf Children’s Society. Anna Coote is the Head of Engaging Patients and the Public at the Healthcare Commission. She was formerly Director of Health Policy at the King’s Fund, lead- VI A note on contributors ing its work on health improvement and sustainable development in the health sector. Prior to that she was Deputy Director of the Institute for Public Policy Research, where she led groundbreaking work on health and social policy and on citizens’ juries and deliberative public involvement. Angela Coulter is Chief Executive of Picker Institute Europe, an independent research and development charity that works to promote understanding of the patient’s perspective at all levels of healthcare policy and practice. She is also editor of Health Expectations, an international peer-reviewed journal on patient and public involvement in health care and health policy. Stella Creasy is Head of Research at Involve. She was previously a local Councillor in East London, acting as Mayor and Chief Whip, and an adviser to Douglas Alexander MP. She wrote her doctorate on ‘Understanding the Lifeworld of Social Exclusion’ and specialises in the social psychology of public participation. Brian Fisher is a practising GP and the Public and Patent involvement lead for the NHS Alliance. He is on the PEC and Board of Lewisham PCT. He has a par- ticular interest in community development and patients having access to their own health records. Frances Hasler is the Head of User and Public Involvement at the Commission for Social Care Inspection. Previously, she was Chief Executive of the National Centre for Independent Living, a user-led organisation. Paul Hodgkin is a practising GP in Sheffield as well as the founder and Chief Executive of Patient Opinion, a website where patients can share the story of their care and rate the service they have received. He has worked for the Department of Health, South Yorkshire Strategic Health Authority and The King’s Fund. Jane Martin is Director of the Patient-Citizen Exchange at the NHS National Centre for Involvement. She is also a Senior Research Fellow in Public Leadership at Warwick Business School and was Executive Director of The Centre for Public Scrutiny until September 2006 Belinda Pratten is Senior Policy Officer at the National Council for Voluntary Organisations. She was previously Senior Lecturer in Health and Social Policy