www.ebook3000.com Making the patient-consumer www.ebook3000.com Making the patient-consumer Patient organisations and health consumerism in Britain Alex Mold Manchester University Press Copyright © Alex Mold 2015 The right of Alex Mold to be identified as the author of this work has been asserted by her in accordance with the Copyright, Designs and Patents Act 1988 Published by Manchester University Press Altrincham Street, Manchester M1 7JA www.manchesteruniversitypress.co.uk 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 applied for ISBN 978 7190 9531 hardback First published 2015 The publisher has no responsibility for the persistence or accuracy of URLs for any external or third-party internet websites referred to in this book, and does not guarantee that any content on such websites is, or will remain, accurate or appropriate Edited and typeset by Frances Hackeson Freelance Publishing Services, Brinscall, Lancs www.ebook3000.com Contents Acknowledgements Abbreviations page vii ix Introduction 1â•… Autonomy â•… Representation â•… Complaint â•… Rights â•… Information â•… Voice â•… Choice 18 42 69 94 117 142 169 Conclusion Bibliography Index 192 209 233 www.ebook3000.com Acknowledgements This book is based on research carried out as part of a Wellcome Trust University Award (grant no 081454/Z/LS/HH) on the construction of the patient-consumer in Britain from 1960 to 1991 I am grateful to the Wellcome Trust for this grant and to the Faculty of Public Health and Policy at the London School of Hygiene & Tropical Medicine (LSHTM) who took on the funding of my position The LSHTM is a fantastic place for a historian of medicine to be based, close to the ‘coalface’ of contemporary health policy and practice, but also surrounded by a group of historians and social scientists Members of the Centre for History in Public Health, and especially Stuart Anderson, Martin Gorsky, Angela Grainger, Anne Hardy, Ingrid James, Susanne MacGregor, Gareth Millward, Jane Seymour, Chris Sirrs and Sue Taylor have all supported and enriched my work in innumerable ways The Centre’s Director, Virginia Berridge, has been and continues to be, a wonderful mentor, offering invaluable advice and guidance throughout this project and beyond Away from the LSHTM, discussions with Gayle Davis, Matthew Hilton, Beatrix Hoffman, Hilary Marland, David Reubi, Sally Sheard, Nancy Tomes, Elizabeth Toon and Duncan Wilson all helped my work develop So too, did the numerous seminar and conference audiences who listened to me talk about my work over the years; particularly helpful were those at Imperial College, the universities of Cambridge, Warwick, Exeter, Birmingham, Manchester, Liverpool, Zurich and Glasgow I feel extraordinarily lucky to be a part of a vibrant history of medicine community that spans the UK, Europe and North America, and the work of people within this community has fed into this book in all sorts of ways Historians, even those that study the contemporary period, remain reliant on libraries and archives Archivists at the Wellcome Library, The National Archives, the Modern Records Centre at the University of Warwick, The Churchill Archives, Churchill College, Cambridge and Birmingham City viii Acknowledgements Archives all provided invaluable assistance The libraries of the LSHTM and the London School of Economics, as well as Senate House Library, the Wellcome Library and the British Library gave me access to books and articles that were crucial to this project I would also like to thank the many individuals that I interviewed and spoke to informally about the history of patient consumerism Some parts of this book have been published as articles in the Historical Journal, the American Journal of Public Health, the Journal of Social Policy and the Bulletin of the History of Medicine I am grateful to the peer reviewers of these articles, and also of this book, for their insightful comments, and suggestions for improvements Thanks also to Tony Mason at Manchester University Press who oversaw the publication of this book Last, but by no means least, I would like to thank my friends and family During the research and writing of this book, I lost my grandmother Doreen Tanswell and my dear friend Francesca Carnevali The dignity of both of these strong women taught me more about what it means to be a patient in the modern NHS than any book or article My parents, Richard and Lindsay Mold, my grandmother Elsie, my sister Becky, my brother-inlaw Tim, my mother in-law Lois, my nieces Annabelle and Eloise and my nephew Tom, have all helped to keen me sane and remind me that there is life away from academia Most of all, I would like to thank Noelle, for her love, her patience, and her smile It is to her that this book is dedicated www.ebook3000.com Abbreviations ACHCEW Association of Community Health Councils of England and Wales Area Health Authority AHA Association for Improvement in Maternity Services AIMS ATP Association of Trained Patients BCA Birmingham City Archives BHA Birmingham Health Authority BMA British Medical Association BPAS British Pregnancy Advisory Service CA Consumers’ Association CCC Churchill College Cambridge CHC Community Health Council CMAC Contemporary Medical Archives Centre CoH College of Health DHSS Department of Health and Social Security EBCHC East Birmingham Community Health Council FPC Family Practitioner Committee GMC General Medical Council GMSC General Medical Services Committee ICAS Independent Complaints Advisory Service ICESCR International Covenant on Economic, Social and Cultural Rights ICS Institute of Community Studies IEA Institute for Economic Affairs IPPR Institute for Public Policy Research JCC Joint Consultants Committee MRC Modern Records Centre NAMH National Association for Mental Health NAWCH National Association for the Welfare of Children in Hospital ... sources and oral history interviews, Making the 10 Making the patient- consumer Patient- Consumer explores the role played by generic patient- consumer organisations in the development of patient consumerism. .. in 1974, were introduced to speak for the patient- consumer The notion of the patient as consumer shifted during the 1970s and 1980s, when patient organisations campaigned Making the patient- consumer. .. and society in modern Britain To locate the making of the patient- consumer in context, this Introduction will first consider historical approaches to the separate figures of the patient and the