Can peer workers really represent users? What about "Activists"?

I started thinking today that there must be an “other” side to all this wonderful, positive talk about peer led services, mustn’t there? In a spirit of curiosity and intellectual inquiry, I asked Google what evaluations there were of such services.

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

A bit of history

Gawith and Abrams (2006) wrote a great article tracing the journey of mental health services in NZ. Consumer advocacy and consumer-led services have their roots in the 1980s and a series of inquiries (eg Cartwright Report of 1988 and Mason Reports in the 1990s) brought to attention the dire state of patient rights and questioned the total authority traditionally associated with the medical profession. The Mental Health Commission was set up to do something about this and services have been, well, recovering from the past ever since. I would really recommend this article for anyone interested in a well-written overview of the evolution of services in NZ from the historical psychiatry-led biomedical focus to today's recovery and consumer rights focus. I found it really helped my understanding to step back and look at the bigger picture, politically, socially, all the events that propelled and impacted the development of services (including peer-led services) along the way.
Reference
Gawith, L. & Abrams, P. (2006). Long journey to recovery for Kiwi consumers: Recent developments in mental health policy and practice in New Zealand [Electronic version]. Australian Psychologist, 41(2), 140-48.

How I found out about peer-led mental health services

Last year I had my first mental health placement, which turned out to be fantastic - educational, inspiring, encouraging. The organisation I was with had what I thought was a very positive and progressive approach to service provision. They treated every person as unique and really tried to empower people. They used a recovery/strengths approach and I really enjoyed it because their philosophy fit very well with my own personal beliefs, and was also consistent with occupational therapy philosophy of enabling, empowerment and being client-centred.

During my placement I got the chance to take part in a human rights workshop for mental health service users, organised by Case Consulting, a peer-led service. I was the only person who did not identify as a service user/provider in the workshop. It was led by a very vocal, funny and assertive woman who wasn't at all like most of the service users I had met so far. She led a full, busy life, running workshops and seminars, educating people, had her own business, and what really struck me was how she was entirely unafraid to be known as a service user. At the time I thought, wow this is like gay pride, as in people who are normally ostracized by society but who have turned around and gained a sense of community and pride from who they are. The atmosphere was so positive, affirming and empowering, I felt a bit left out! Not that the other participants weren't warm and friendly, but I sort of thought to myself, well this must be what it's like to be the "odd one out", which I never really felt before even though I am really a minority in this country too. It was strange but inspiring and I went away with much to reflect upon, about myself, my identity, my own status as a minority...

This workshop also sat well with occupational therapy, in particular occupational justice as it dealt with issues like rights as job-seekers and employees. Now that I think about it, human rights education is all about empowering people through information/education, which is one way of targeting discrimination and stigma. We know that stigma is a huge barrier to occupational participation and quality of life in all areas of life (Byrne, 2000) so this is a wonderful step forwards.

Case Consulting is still holding these workshops as far as I know and for those who are interested in inviting them to your part of the country to hold one, here is the link to their human rights workshop series, Korowai Whaimana.

Here is a picture of the certificate I got at the end! :)

REFERENCES

Byrne, P. (2000). Stigma of mental illness and ways of diminishing it [Electronic version]. Advances in Psychiatric Treatment, 6, 65-72. Retrieved from http://apt.rcpsych.org/cgi/content/short/6/1/65