Summary

The ethical case for involving service users in service planning and delivery, and in research and evaluation, has been made on several grounds. One important set of reasons is that such involvement is ethical, as well as effective. In this chapter the ethical case for service user involvement is reviewed as well as how this involvement operates at various levels. Whether a consumerist or a more democratic or empowering approach is taken as the framework for such involvement, there are increasing principle-based justifications for user involvement.

Introduction

Developments in health and social care in the UK, outlined in The NHS Plan (DH, 2000) and Independence, wellbeing and choice (DH, 2005), should be devised in partnership with or led by citizens with experiences of the services provided (Beresford and Evans, 1999; Peck et al, 2002). Arguments are based both on a challenge to positivist approaches underpinning the development of services (Beresford and Evans, 1999; Beresford, 2001) and also as an ethical requirement, in terms of civil rights, overcoming oppression and respect for people with disabilities (Rutter et al, 2004). In challenging traditional, linear, positivist methods, service user groups and other commentators argue that such approaches can be disempowering and miss important aspects of service users’ experiences. Overall, the argument is that people who are most directly and profoundly affected by services should have a say in and be able to contribute their unique expertise to changes in such service provision. This chapter considers the challenges and the opportunities these developments imply.

Clarifying the domain

Before moving on to the main argument, there is a need to clarify the domain. The concern in this chapter is with the development of social care and health services in general. Broadly, two strands of work can be seen to be included in this definition: managing existing or planning new services; and research that is planned, undertaken and informs direct service development. Frequently, both these sets of activities involve groups of various kinds: ‘working’, ‘steering’, ‘advisory’ or ‘reference’, to name but four varieties.

Many other forces are at play. Very often, managers and politicians also directly influence the spending on and direction of research, as well as services. Funding from charities forms a relatively small but important element of financial support for research and the voluntary sector also plays an increasing role in service provision.