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EDITORIALS: Gillian M Craig Involving users in developing health services BMJ 2008; 336: 286-287 [Full text]

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User Involvement in Mental Health

Jenny Jack, Rhodri Huws, Consultant Psychiatrist, Sheena Mansell, Clinical Psychologist, both East Glade Centre, 1 East Glade Crescent, Sheffield S12 4QN   (24 February 2008)

User Involvement in Mental Health 24 February 2008
Jenny Jack, Specialist Registrar in Psychiatry Chesterfield Royal Hospital, Calow, Chesterfield, S44 5BL, Rhodri Huws, Consultant Psychiatrist, Sheena Mansell, Clinical Psychologist, both East Glade Centre, 1 East Glade Crescent, Sheffield S12 4QN Send response to journal: Re: User Involvement in Mental Health	In her editorial, Craig[1] highlighted the need to distinguish passive forms of user involvement -- where patients' views are elicited, with the associated risk of 'tokenism' -- from active input where real influence is possible. Similarly, Fudge et al[2] noted the vagueness of the concept of user involvement, ranging from patient satisfaction surveys to more active participation in areas such as peer support. In their study, only small numbers of patients became involved in the development of a stroke service. They raised the question of whether characteristics of certain patient groups affect the implementation of user involvement. We investigated interest in user involvement, and barriers to this, among patients of a community mental health team with, predominantly, chronic psychotic illness. We adopted a questionnaire format, following which those expressing interest were invited to attend a focus group. We aimed to determine the level of interest among patients in becoming involved in the service as active users, helping to identify and set up services for which there may be a need, or acting as user representatives on interview panels or at governance meetings. From a sample of 100 patients, one third completed the questionnaire. Less than half expressed an interest in user involvement and 90% felt there would be a barrier to this. Barriers cited were anxiety, lack of knowledge and interest, transport, and a concern that opinions would not be listened to. Of those attending a subsequent focus group, the main concerns were anxieties relating to specific aspects of their care. This resulted in difficulty generating a discussion around user involvement in a broader sense, although anxiety and lack of knowledge were again raised as impediments. We highlight the difficulty in engaging patients from this marginalised population in meaningful discussion around user involvement with a view towards more active participation. Future attempts to elicit attitudes to user involvement, as a means to encouraging more service users to become involved in mental health services may benefit from employing less formal methods, with views collected through discussion in a more familiar environment. One example would be within informal groups where patients and staff members already meet regularly, such as drop-ins or activity groups. [1] Craig GM. Involving Users in Developing Health Services. BMJ 2008; 286-7 (9 February) [2] Fudge, N, Wolfe CDA, McKevitt, C. Assessing the Promise of User Involvement in Health Service Development: ethnographic study. BMJ 2008; 313-17 (9 February) Competing interests: None declared