At first I thought it might be too early to tell as this phenomenon seems recent, relatively speaking. Surprisingly, I found a systematic review of 12 comparative studies (mostly American) focussing broadly on the effects of user involvement in mental health services. Simpson and House (2002) concluded that there were no major disadvantages and some benefits of user involvement in providing services. Okay. For a different perspective I looked at a user-led evaluation of the same thing. Rose, Fleischmann and Schofield (2010) studied two London boroughs and what I thought interesting in their study was the comparison of users classed as “activists” and “non-activists”. (For those who must know, there was no difference in both groups’ perception of the impact of peer services. 92% of the whole sample thought peer involvement improved services. Non-activists gave more generalised answers while activists gave more specific answers.) What really struck me in this article was the description of “activism” as an issue in peer services with two contradictory views. Remembering that this is discussing user-providers, ie peer workers, read this excerpt (emphasis mine):
The first says that user activists are more pathological and this is why they criticize services… if user activists become upset or angry during user involvement activities then this behaviour is often seen as a result of their perceived illness…Managers and professionals wish to hear the ‘authentic voice’ of experience but not if it is expressed too negatively...The second claims that user activists are less ‘ill’ and more articulate, and this is why they are able to function in processes aimed at change in mental health services.
In either case, activists are considered not to be ‘representative’. Rose et al. (2002) referred to this as the ‘catch 22’. If a user is articulate enough to participate in change management activities then they are not ‘representative’ of ordinary users. Ordinary users are not articulate (but they are satisfied). Activists cannot speak on behalf of ordinary users and ordinary users cannot speak for themselves. In such a discourse, no service user can have a voice.The cynic in me immediately pounced on that. So user-providers who speak out and criticise services (ie, activists) are either pathological (so ignore them, it’s the diagnosis talking) or else non representative of other users. Meaning… the “average” user (if there is such a thing) are satisfied and don’t criticise? So do health professionals listen to the peer service providers? If they don't, is there a point to peer services? Can we ever look beyond the diagnosis? In my opinion, this is a human rights issues because it's almost as if once you get a mental illness diagnosis, you can't move on. If you recover enough to lobby for improvement of services as a peer worker but get caught in a "catch-22" as described above, wouldn't this defeat the purpose of having peer services in the first place (in addition to being detrimental to promoting recovery)? Do mentally ill people have a right to move onwards and upwards?
References
(I also included the reference in the excerpt, in case anyone wanted it)
Rose, D., Fleischmann, P. & Schofield, P. (2010). Perceptions of user involvement: a user-led study [Electronic version]. International Journal of Social Psychiatry, 56, 389. DOI: 10.1177/0020764009106618. Retrieved from http://isp.sagepub.com/content/56/4/389.full.pdf+html
Rose, D., Fleischmann, P., Tonkiss, F., Campbell, P. & Wykes, T. (2002) User and carer involvement in change management in a mental health context: Review of the literature. Southampton: National Institute for Health Research SDO Programme. Retrieved from http://www.sdo.nihr.ac.uk/files/project/17-final-report.pdf
Simpson, E. L. & House, A. O. (2002). Involving users in the delivery and evaluation of mental health services: systematic review [Electronic version]. British Medical Journal, 325, 1265. doi: 10.1136/bmj.325.7375.1265 Retrieved from http://www.bmj.com/content/325/7375/1265.full
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