Patients or partners? Case studies of user involvement in the planning and delivery of adult mental health services in London

Abstract

User or patient involvement (UI) in the planning and delivery of health services is an aspiration of many industrialized economies, and has been promoted by United Kingdom (UK) governments for over two decades. This paper reports the findings of qualitative case studies of UI in two mental health provider Trusts in London. Semi-structured interviews were conducted with a variety of stakeholders, including Trust staff at all levels and user group members, to compare the expectations of diverse stakeholders and the extent to which these were achieved. We found that UI remained in the gift of provider managers: providers retained control over decision making, and expected users to address Trust agendas and conform to Trust management practices. Users wanted to achieve concrete changes to policies and services, but had broader aspirations to improve the status and condition of people with mental health problems. Suggestions are made about the direction of future strategies to improve UI.

Introduction

Exhortations to involve patients in the planning and delivery of healthcare services have been the subject of United Kingdom (UK) national policy documents for the past two decades (Dept. of Health, 2001; NHSE, (1996), NHSE, (2000)). Involving users of health services in healthcare planning may serve a number of related functions for public administrators. First, public involvement may improve the quality of services, by clarifying what patients want. This has tended to be the motive emphasized by UK policy directives. Secondly, user involvement (UI) in the planning of free access health services paid for by taxation is a sound democratic principle (Cooper, Coote, & Davies, 1995; Milewa, 1999). Thirdly, public involvement may be seen as a strategy that legitimates unpalatable change (rationing and/or increased charges), allowing politicians to deflect criticism by suggesting a broader consensus (Bowling, 1992; Redwood, 2000). Some commentators have observed that the promotion of UI throughout the industrialized world has coincided with impending crisis in the funding of healthcare (Lomas, 1997). Yet it has also been argued that involvement initiatives in the UK, United States (US) and Canada have introduced new grounds for dissent between service users, local communities, purchasing authorities and providers over issues such as hospital closures (Abelson, 2001; Charles & DeMaio, 1993; Checkoway, 1981), compounding public anxiety about the State's ability to meet increasing demand for healthcare (Ham & Alberti, 2002).

While successive UK governments have urged healthcare providers to involve service users, evidence of changes resulting from UI is limited (Crawford et al., 2002). Uncertainty of outcome is compounded by uncertainty about the process, as policy guidance has offered little clarification of the meaning of ‘involvement’. Terms such as ‘consultation’ and ‘partnership’ are used interchangeably (Arnstein, 1971; Barnes & Wistow, 1994), although consultation is a model in which professionals retain control of both the process and outcomes of UI, while partnership implies similar status, shared power and some equality of influence over both the agenda and outcomes of shared decision making (Chadderton, 1995).

The demand for UI has been particularly significant within mental health services, not only in the UK, but throughout the developed world (Australian Health Ministers, 1992; Geller, Brown, Fisher, Grudzinskas, & Manning, 1998; Mental Health Commission, 1998; WHO, 1989). The stigma of mental illness, the fight for recognition of intellectual capacity, and the historical use of physical and pharmaceutical control and restraint (Lord & Dufort, 1996) unite psychiatric patients and ‘survivors’ in a cause which encompasses, but is not limited to, the reform of services (Campbell, 1999; Campbell & Lindow, 1997; Croft & Beresford, 1993; Pilgrim & Waldron, 1998). In the US, consumers and ex-patients of psychiatry have employed the discourse of civil rights, rather than health sector reform (McLean, 1995), with considerable impact upon State policy and community services (Salzer, 1997). In the UK, where health service managers are required by central government to promote patient and public involvement, user-led reform has been hampered by: uncertainty about how to involve; conflicting management priorities; limited staff commitment; and users’ dissatisfaction with the extent of ‘involvement’ offered (Barnes, 1999; Bowl, 1996). User representatives are commonly required to fit into management structures, and struggle against professional authority, from a position weakened by lack of support networks and disparities in skills (Connor, 1999; Paap, 1978; Sullivan & Scattolon, 1995; Whiteford, Buckingham, & Manderscheid, 2002), while those who are prepared to conform to management practices may be disparaged as ‘unrepresentative’ of the general patient population by providers and users alike (Campbell, 1990).

This paper reports qualitative case studies carried out by the authors in London, UK, in the catchment areas of two Mental Health provider Trusts (NHS service providers). The literature described above relating to motives, content, difficulties and outcomes of UI activities provides the background to our case studies.