Hugh McLaughlin - Service-User Research in Health and Social Care

Hugh McLaughlin 2009

First published 2009

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In writing this book, I would like to thank all the service users I have met in practice, and as a researcher, those who have educated me, challenged me and helped to shape my ideas and views over the years. I would also like to thank Susannah Trefgarne, Anne Birtchnell and Rachel Burrows from Sage for their editorial encouragement and prompt response to any query. In particular, I would like to thank Catherine, without whose love, help and support and allowing me to elude the household chores, this book would never have seen the light of day. I would also like to thank James and Eleanor for making sure I never forgot who I was!

This book aims to provide the reader with a clear introduction to the rationale, costs and benefits, ethical considerations, ontological, epistemological, practicalities and critical issues in involving service users in research. Throughout the book you will find boxes, like the one below, which ask you to reflect on your understanding of the issues being considered. You may want to record your responses to chart your understanding of the issues as they develop throughout the books journey.

These critical issues, as you will find out, are contentious and will be visited and re-visited as we proceed through the book, unpicking assumptions, challenging received wisdoms and developing our awareness of the issues involved. By the end of the book it is intended that the reader will be able to critically assess where service user involvement would be beneficial, identify the strengths and weaknesses of such an approach, be able to justify a decision to include or exclude service users in research, identify the nature and limitations of service user knowledge claims and be able to critically evaluate other researchers attempts at involving service users.

To begin our journey this chapter charts the development of service user involvement in policy, practice and research, exploring what we mean by health and social care, service users and identifying the books structure and organization.

Beresford (2005), a key figure in involving service users in policy, education and research, rightly observes that we cannot begin to understand service user involvement in research without first considering user involvement more generally. He notes that there has been a growing and strengthening interest in the development of service user involvement in health and social care policy and planning since the 1980s. However, the development of service user involvement in research has been slower to develop. It is also worth noting that the development of service user involvement has been an international phenomenon, with ideas from other countries such as the USA, with its tradition of civil rights, and the developments in the Netherlands influencing the direction in the UK (Warren, 2007).

The Conservative governments of Thatcher and Major had been keen to reduce the power of professionals who were viewed as operating health and social care services for their own ends and wanted to move towards more customer centred organizations run by professional managers. Following the election of the Labour government in 1997 this trajectory was further enhanced with the introduction of the modernization thesis. Modernization (Department of Health, 1998a) is viewed as the necessary process for updating public services, including health and social care, to match the expectations of the modern day consumer. As such, it maintained the Conservatives attack on provider dominance whilst promoting business solutions to social policy problems and sharpening accountability (Newman, 2000). Modernization emphasized the importance of developing partnerships (Balloch and Taylor, 2001) and taking user involvement seriously, as well as requiring agencies to work with, and develop partnerships with those for whom they provided services. This emphasis on service user partnerships and involvement can be seen in a range of government publications, including Department of Health, 1998a, 2000a, 2000b, 2005; NHS Executive, 1999; and in the range of national service frameworks, for example, mental health, older people, children (Department of Health, 1999, 2001b; Department of Health and Department for Education and Skills, 2004) and the Valuing People strategy for people with learning difficulties (Department of Health, 2001c). In a more recent initiative the government has been establishing local involvement networks (LINks) in adult services whose remit includes the encouragement and support of local people to become involved in how local health and social care services are planned and run (Department of Health, 2007a). Importantly, LINks will look at all health and social care services within a geographical area irrespective of whether they are provided by the NHS, a local authority, a private company, a social enterprise or a charity. LINks will also have the right of entry to a range of services to examine what they do. It is too early to know whether LINks will be effective or not, but they represent an attempt to bridge the normal health and social divide whilst promoting public involvement.

The UK government has been keen to promote service user and carer involvement in social policy and service development, but this has often been more a question of ideology rather than one of definitive evidence. Crawford et al. (2002) have identified that the involvement of patients has contributed to the changes in the provision of services across a range of settings, but there is little evidence as to how these changes have impacted upon the quality of care or the health of patients. Simpson and OHouse (2002: 1265), in a systematic review, identified five randomized control trials and seven other comparative studies, mainly involving studies in the United States of America, whereby they concluded that: