Chapter 3: Health Consumer Groups in the United Kingdom: Progress or Stagnation?
Kathryn Jones and Rob Baggott Improving patient and public involvement (PPI) in health care has been a declared aim of recent British governments (Department of Health 1996, 1999, 2004a). The objective has been to develop services that are more responsive to the needs of patients and the public by strengthening their role in decision-making at individual, service and policy levels. Timothy Milewa in this volume argues that new governance arrangements bringing multiple actors – including patients, the public, professions and commercial interests – into negotiation, design and implementation of health policy have opened new avenues for interaction and activism. Even so, there is ongoing concern about a ‘democratic deficit’ in the National Health Service (NHS), particularly the lack of representation of public and patient interests at the policy level (Cooper et al. 1995; House of Commons Health Committee 2007). As voluntary sector organizations seeking to promote or represent the interests of users and carers in the health arena, UK health consumer groups play an important role in redressing this deficit. These groups have long been involved in providing support and services to patients and the public (Lock 1986). However, academic interest in health consumer groups developed from the late 1980s, reflecting a growing awareness of their activities (Hogg 1999; Wood 2000). In 1999 the United Kingdom’s Economic and Social Research Council (ESRC) funded a study of health consumer groups which showed that groups engaged with different policy actors and undertook various policy activities. The study concluded that they were becoming more involved...
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