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First published in Great Britain in 2012 by

The Policy Press
University of Bristol
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The Policy Press 2012

British Library Cataloguing in Publication Data
A catalogue record for this book is available from the British Library.

Library of Congress Cataloging-in-Publication Data
A catalog record for this book has been requested.

ISBN 978-1-4473-0748-8

The right of Marian Barnes and Phil Cotterell to be identified as editors of this work has been asserted by them in accordance with the Copyright, Designs and Patents Act 1988.

All rights reserved: no part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without the prior permission of The Policy Press.

The statements and opinions contained within this publication are solely those of the editors and contributors and not of the University of Bristol or The Policy Press. The University of Bristol and The Policy Press disclaim responsibility for any injury to persons or property resulting from any material published in this publication.

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Contents

Introduction: From margin to mainstream
Marian Barnes and Phil Cotterell

Part One: Introduction: user movements
Marian Barnes and Phil Cotterell

1: Survivors History Group takes a critical look at historians
Survivors History Group

2: The Nottingham Advocacy Group: a short history
Marian Barnes and Colin Gell

3: Building solidarity, ensuring diversity: lessons from service users and disabled peoples movements
Peter Beresford and Fran Branfield

4: Service users and the third sector: opportunities, challenges and potentials in influencing the governance of public services
Graham P. Martin

5: The capacity, impact and challenge of service users experiential knowledge
Phil Cotterell and Carolyn Morris

Part Two: User involvement in services
Marian Barnes and Phil Cotterell

6: Collaboration in public services: can service users and staff participate together?
Michelle Farr

7: Changing patterns of service user involvement, 1990-2010
Clare Evans and Ray Jones

8: Looking out from the middle: influencing policy change through user involvement
Joe Duffy and Brendan McKeever

9: Changing minds: unleashing the potential of mental health service users a critical perspective on current models of service user involvement and their impact on wellbeing and recovery
Stephanie McKinley and Sarah Yiannoullou

10: Moving forward: understanding the negative experiences and impacts of patient and public involvement in health service planning, development and evaluation
Sophie Staniszewska, Carole Mockford, Andy Gibson, Sandy Herron-Marx and Rebecca Putz

Part Three: User involvement in research
Marian Barnes and Phil Cotterell

11: Young mothers experiential knowledge and the research process
Geraldine Brady, Geraldine Brown and Corinne Wilson

12: Involving young people in research: making an impact in public health
Louca-Mai Brady, with young researchers Ellie Davis, Amrita Ghosh, Bhavika Surti and Laura Wilson

13: Projects through partnership: promoting participatory values throughout the research process
Robert Kirkwood

14: Involving older people in research: empowering engagement?
Lizzie Ward and Beatrice Gahagan

15: Still out there? Is the service user voice becoming lost as user involvement moves into the mental health research mainstream?
Kati Turner and Steve Gillard

16: Service user-led research in the NHS: wasting our time?
Patsy Staddon

17: Should we? Could we? Measuring involvement
Rachel Purtell, Wendy Rickard and Katrina Wyatt

18: Evaluating the impact of public involvement on research
Rosemary Barber, Jonathan Boote, Glenys Parry, Cindy Cooper and Philippa Yeeles

Conclusion: Critical and different perspectives on user involvement
Marian Barnes and Phil Cotterell

Rosemary Barber is an honorary senior research fellow at the University of Sheffield, School of Health and Related Research, where she jointly leads a research theme on public involvement in research. She became interested in public involvement through her work as a clinical psychologist in adult mental health. Current research interests include evaluating the impact of public involvement, and working with service user co-investigators to explore acceptable and unacceptable aspects of psychological interventions and ways of improving services for people with long-term depression. She is a member of INVOLVE and the Medical Research Councils Public Panel.

Marian Barnes is currently Professor of Social Policy at the University of Brighton. She has both researched and worked with service user and carer groups for over 20 years and has also studied public participation in different policy contexts.

Peter Beresford OBE Professor of Social Policy and Director of the Centre for Citizen Participation at Brunel University. He is also a long-term user of mental health services and chair of Shaping Our Lives, the national independent service user controlled organisation and network. He has a longstanding involvement in issues of participation and empowerment as writer, researcher, educator, service user and campaigner. He is a member of the Ministerial Reference Group for Adult Social Care, a trustee of the National Skills Academy for Social Care and a member of the Advisory Board of the National Institute for Health Research.

Jonathan Boote is employed by the National Institute for Health Research (NIHR) Research Design Service for Yorkshire and the Humber as a research fellow with particular responsibility for patient and public involvement, and has been involved in a programme of research on patient and public involvement at the University of Sheffield for the last 10 years. He is a member of the NIHR Stroke Research Networks Clinical Studies Group on Patient, Carer and Public Involvement, the Strategic Local Priority Group for Patient and Public Involvement in South Yorkshire, and invoNET.

Geraldine Brady is a senior research fellow at Coventry University in the Applied Research Centre in Sustainable Regeneration. Her substantive area of research has been a range of qualitative research, evaluation and training projects exploring the experiences of pregnant teenagers and young parents. Together with colleagues she has used visual methods to provide insight into the lives of young people and to challenge negative perceptions. Her interest in the experiences of children and young people began with her PhD, which explored perspectives of living with the diagnosis of attention deficit hyperactivity disorder (ADHD). Geraldine is keen to promote links between research, policy and practice, including encouraging reflection on the processes and decisions involved in research.

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