Healthy Democracy The future of involvement in health and social care

152 Pages·2006·0.69 MB·English

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