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.