BackgroundThis study set out to measure the extent and perceived impact of service user involvement (SUI) in mental health services and to explore different forms of SUI, both collective and individual. The focus was on service users’ (SUs’) interactions with managers and other key decision-makers in the UK NHS and social care. The theoretical frameworks used were organisational theory and new social movement theory.ObjectivesTo explore the impact of service user involvement in mental health on shaping policy agendas and delivery specifically in terms of their impact on key decision-makers.DesignA mixed-methods design was used.SettingThe study took place in three NHS foundation trusts (FTs): two metropolitan and one rural.MethodsThe methods included surveys, interviews, ethnographies, case studies and focus groups.ResultsIn the first phase of the study, which took the form of surveys, it was found that ‘ordinary’ SUs had a relatively high level of involvement in at least one service domain and that where they were involved they believed this had produced a positive impact on service development and delivery. Likewise a majority of front-line staff encouraged SUI and thought this had a positive impact although social workers were more likely to have directly participated in SUI initiatives than nurses. In the second phase of the study, which used qualitative methods, an ethnography of user-led organisations (ULOs) was conducted, which showed that ULOs were being forced to adapt in an organisational climate of change and complexity, and that decision-makers no longer claimed the high moral ground for working with ULOs, but expected them to work within a system of institutional behavioural norms. This posed many challenges for the ULOs. In phase 2 of the research we also examined the role of SU governors in NHS FTs. We posed the question of whether or not SU governors represented a shift away from more collective forms of organisation to a more individual form. It was found that SU governors, too, had to work within a system of norms deriving from the organisational structure and culture of the NHS, and this impacted on how far they were able to exercise influence. There was also evidence that user governors were beginning to organise collectively. In respect of individual forms of involvement we also attempted to run focus groups of people in receipt of personal budgets but concluded that, as yet, they are not embedded in mental health services.ConclusionsIt was concluded that SUs and managers are working in a climate of dynamic and complex organisational change, of which user involvement is an integral part, and that this has impacted on the nature of SUI as a new social movement. Managers need to attend to this in their interactions with SUs and their organisations.FundingThe National Institute for Health Research Health Services and Delivery Research programme.
User involvement in regulation: A qualitative study of service user involvement in Care Quality Commission inspections of health and social care providers in England