Introduction

Patient and public involvement has been suggested as a mechanism to engage individuals more fully in their own healthcare and to reorient service provision around the needs of users rather than providers (Tritter and Macallum, 2006). Yet, patterns of health inequality are also reflected in those who tend to be involved and those who are members of ‘hard to reach’ groups. The Acheson Report (Acheson, 1998) includes no explicit mention of involvement but has had a significant influence in integrating a sensitivity to diversity in most activities seeking to engage patients, carers and members of the public. Unless user involvement draws on the diverse range of the population and aims to be inclusive, it can only serve to reinforce existing patterns of inequality in health provision, access and outcomes.

A key weakness in user involvement is its capacity to result in a ‘tyranny of the majority’ (Madison, 1961[1787]). Indeed, there is evidence that particular populations are underrepresented in user involvement activities (Clark et al, 2004). The users who participate may be disproportionately those who have experience of services and are best able to engage and present their issues. Therefore greater emphasis on involving users may exacerbate underlying inequalities of access, resources and ability.

This chapter begins by summarising the recent UK policy context and differentiating between types of involvement. It then highlights the problems in trying to define ‘hard to reach’ groups and the importance of user involvement for such groups. There is a particular focus on the health inequalities experienced by two ‘hard to reach’ groups – people with serious mental illness and those who are homeless – and examples of successful involvement strategies. The chapter concludes by suggesting that user involvement is everyone's business but requires radical shifts in both theory and practice to succeed.

The policy context of user involvement

The past 20 years have been characterised by a rapid growth in a range of different user involvement activities underpinned by a multitude of policy directives across all countries of the Organisation for Economic Cooperation and Development. Since the establishment of Community Health Councils in 1973, the rhetoric of user involvement has become a central component of health and social policy in the UK. The 1990 NHS and Community Care Act was the first piece of UK legislation to establish a formal requirement for user involvement in service planning.