Users' Voices is the latest in a series of recent studies undertaken by service users into their experiences of mental health services. Like Knowing our Own Minds (Mental Health Foundation, 1997) and Strategies for Living (Mental Health Foundation, 2000), it is a major contribution to our knowledge of service users' experiences of mental health services. Users' Voices consolidates and refines what is now becoming the gold standard of methodology for user-led research, through the training of mental health service users in research methodology. In addition, it reaches some important conclusions about service level and individual care standards that fit closely with the National Service Framework (NFS) for Mental Health.
The project trained over 60 interviewers, all of whom were service users, who then interviewed over 500 service users both in the community and in hospital, at seven sites, urban and rural, across England. This is a methodology that embodies a bottom up approach to research, in which service users draw on their own experience and knowledge of local mental health services. The research questions asked are of direct relevance to service users, and this effectively re-defines outcomes in terms of users' priorities. This can help to make greater sense of clinical research. For example, Faulkner and Thomas (Reference Faulkner and Thomas2002) have argued that research on drug interventions rarely takes sufficient account of what it is actually like to take the drug. If clinical drug trials paid closer attention to the lived experience of those who take these drugs, we would have a better understanding of issues such as non-compliance. User-led research is evolving into a powerful tool for service evaluation, which, as Rose points out, can be used in conjunction with the NSF, which recommends that service users should be involved in auditing the Care Programme Approach (CPA).
As for some of the findings, only around 50% of subjects felt they were given sufficient information about the side-effects of medication. Knowledge of the different components of the CPA was extremely patchy, and the majority of users appeared not to understand its purpose. Very few even knew they had a care plan, or had a copy of it, and even fewer knew the date of their next review. Not surprisingly, satisfaction with information was significantly associated with levels of satisfaction with community mental health services. Overall, the study shows just how little service users are involved in determining the nature of the service they receive. This work, like that of the Mental Health Foundation, should be read by every psychiatrist in the land, and its message taken to heart. The College would do well to place it on the recommended reading list for trainees.
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