Issue 16 – July 2009Author: Bob Diamond (firstname.lastname@example.org)
- User involvement at all levels of mental health services significantly contributes towards a more informed and personally meaningful understanding of distress.
- User involvement improves the effectiveness of care and support provided by Mental Health services by promoting a shared dialogue between workers and people who use services.
- There is a huge variation nationally of user involvement within Mental Health services, the debate continues as to whether real influences on services can be achieved through user involvement being situated within or outside of services.
Implications for practice
- A therapeutic relationship is not possible without some form of user involvement. User involvement is essential for developing a collaborative dialogue so to understand a person’s experiences and support someone with their distress.
- User involvement should be a regular consideration during our work at individual, team and organisational levels.
IntroductionHealth policy guidelines state that people who use mental health services should be involved in the planning and delivery of care that they receive1. Involvement of people who use services ranges from consultation over service planning, involvement with staff training and recruitment, to employment within services. For an excellent overview of the history, actions and resources available see Campbell (2006)2. User involvement has been described in various capacities such as: users being passive recipients of communication, subject of consultation and agent in control3. Involvement has also been discussed at various levels in the organisation such as interaction between service users, between users and professionals, management of local services and planning of overall services3. Hickey (1998)4 highlighted a continuum from least to most meaningful user participation: from services providing users with information and explanations, consulting with users, equal partnership between users and services, and finally to user-control. Provision of information and consultation are described as a ‘consumerist approach’, whereas partnership and user control are seen as ‘a process of democratisation’ and refer to active citizenship. Some years ago, local mental health services introduced a number of service standards to promote user involvement, amongst the standards were: involvement with staff training and recruitment; staff and service development; and employment of service users in development posts (for a full copy of the standards see Diamond et al. 20035).
User involvement as essential to the understanding of distressOur current understanding and interventions for distress is partial and limited. Increasing dialogue and involvement between professionals and people who use mental health services will elaborate our understanding of distress. Furthermore, collaborative involvement can lead to more meaningful and useful ways of providing care and support. Shared decision-making through user involvement shows more satisfactory outcomes with all forms of support (medication and talking treatments). User involvement in the provision of services is an opportunity to contribute to a much-needed change in the values and knowledge within services. Such involvement also provides opportunities for an extended dialogue between workers and people who use services to explore confusion, distress, social exclusion and what helps recovery6. User involvement attempts to avoid the ‘us and them’ culture and encourages mental health professionals to value people’s understanding and story of their experiences (their ‘personal narrative’). Involvement requires services to see such personal narratives as a valuable form of evidence and not simply as subjective and irrelevant. There are many accounts of users’ and survivors’ experiences of distress (see Read & Reynolds, 19967). Wallcraft and Michaelson (2001)8 propose that the current discourse within services of ‘psychopathology of breakdown and crisis,’ needs to replaced by developing a survivor discourse that is less stigmatising, less dismissive, more meaningful and purposeful. There is a risk that the current rhetoric in the NHS of partnerships, which implies a sense of involvement and equality, overlooks the exercise of interests and power. Campbell2 notes that it is much more comfortable for those in positions of power and influence to maintain the existing structure to services, than to radically change services. It is a sobering caution that user involvement may not always be fully thought through and can be poorly implemented. Other critics suggest user involvement has gone as far as it is likely to under the present structure of care. There is a risk that if people with experiences of using services are co-opted into involvement in statutory services, an essential critical voice may be diminished. The remedy for some is a significant increase in resources to existing user involvement; alternatively for others it is to remove user involvement initiatives to outside of statutory services. The debate continues as to whether real participative involvement by people who use mental health services can be achieved through involvement situated inside or outside of services.
- Department of Health (1999). National Service Framework for Mental Health. London: HMSO.
- Campbell, P. (2006). Some things you should know about user/survivor action: A Mind resource pack. Mind publications.
- Peck, E., Gulliver, P. & Towell, D. (2002) Information, consultation or control: User involvement in mental health services in England at the turn of the century. Journal of Mental Health, 11(4), 441 – 451.
- Hickey, G. (1998). Exploring the concept of user involvement in mental health through a participation continuum. Journal of Clinical Nursing, 7(1), 83 – 88.
- Diamond, B. Parkin, G. Morris, K. Bettinis, J. & Bettesworth, C. (2003) User involvement: Substance or spin? Journal of Mental Health, 12 (6), 613 – 626.
- May, R. (2001). Crossing the “them and us” barriers: an inside perspective on user involvement in clinical psychology. Clinical Psychology Forum, 150, 14-17.
- Read, J. & Reynolds, J. (1996). Speaking our minds: An anthology. Basingstoke: Macmillan press.
- Wallcraft, J. & Michaelson, J. (2001) Developing a survivor discourse to replace the ‘psychopathology’ of breakdown and crisis. In C. Newnes, G. Holmes, C. Dunn, (Eds). This is madness too. Ross on Wye: PCCS books
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