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 about the Recovery Approach, adopted by NZ policy

In my previous post I promised I would talk a bit about the recovery approach.

I guess in order to make my point about why peer led services are consistent with recovery principles, I'll need to define recovery. Defining recovery is a tough one, if you read the literature you will not find a single consistent definition. However, it's usually described as a complex, non-linear journey or process that involves the following aspects:

1) Hope for the future 

2) Healing of self-identity 

3) Empowerment 

4) Re-connection with the larger community 

5) Rediscovery of meaning 

6) Regardless of symptoms experienced 

(Deegan, 1988; Jacobson & Greenley, 2001; O’Hagan, 2001) 

I think that entering into a perspective that values one's past experiences as a service user, and recognising how that can help someone else, is really important for recovery. Attending and receiving training in order to best perform that role, well as an OT I think that's a fantastic way to gain some skills which augment your past experiences in order to regain a sense of productivity and contribution to society. I just imagine if I were a service user and I had been plagued by depression and I've been disconnected and isolated (as many are), well getting back into work would be a great way to rebuild  my confidence, my sense of self-efficacy and I'll be able to contribute. It's also reaching out and connecting with others. 

Like my previous post pointed out, the service users who access peer services will benefit but it's also an act of empowerment for the person who's recovered and wants to give back. The best part is (see bold point #6 above) this is all regardless of symptoms. So to be recovered, you don't have to be entirely perfect and back to fantastic all the time. It's okay to still be on your journey even as you help others. It's about starting the journey, I reckon, taking a step to recover some hope and reclaim aspects of your identity. That's the part I really like. Of course this all resonates with the OT in me, as it's occupational justice being served, and it's increasing occupational participation. It's about empowerment, it's about (re)gaining a voice as service users, it's about reducing some of the stigma and disadvantage of being a mental health service user by showing that hey I HAVE got something to offer. That is incredible, and I'm so glad it's finally, finally happening.

References

Deegan, P. E. (1988). Recovery: The lived experience of rehabilitation [Electronic version]. Psychosocial Rehabilitation Journal, 11(4), 11-19. Retrieved from http://myweb.polyu.edu.hk/~ssmliang/web%20info/newlifereocovery/Deegan%201994(1988).pdf


Jacobson, N. & Greenley, D. (2001). What is recovery? A conceptual model and explication [Electronic version]. Psychiatric Services, 52, 482-485. Retrieved from http://www.psychservices.psychiatryonline.org/cgi/content/full/52/4/482


O’Hagan, M. (2001). Recovery competencies for New Zealand mental health workers [Electronic version]. Wellington:  Mental Health Commission. Retrieved from http://www.mhc.govt.nz/Resources/Publications/Workforce

Setting up peer services in Counties Manukau - threefold benefits for users, peers and clinicians

I was looking for information about peer services in NZ and found a very informative interview with Sue Hallwright, manager of the mental health development team in Counties Manukau DHB, who talks about the experience of setting up peer services. Sadly I wasn't allowed to embed on blogger.com so I've provided a summary and then a link for anyone who wants to have a look at the video (it's about 30 minutes long, but goes fast, very interesting!). 
Sue first talks about how some team members were sent to in Phoenix, Arizona, and came back inspired and impassioned. This service also provided their training programme so that helped get things up and running in a shorter time. Over the last few years, about 120 people with experience of mental health services have been trained to become peer support specialists who work within the multidisciplinary team. All service users have the right to receive peer support. 
This move has benefitted not only users, who receive support and regain hope from "living proof that recovery happens", but also the peer support specialists who through the training reshape their own experiences as strengths and are recast as "heroes" and "experts". Graduating from the training programme and having employment are strong evidence of recovery and a better future for users. Interestingly, she said that clinicians also benefitted because (for some of the jaded ones) the peer support specialists reminded the clinicians that there was hope!
Here is the link to the video and for anyone interested, here is a link to Sue Hallwright's current portfolio on the DHB website. I'll try to find a video of a user's or a peer's perspectives, or if anyone knows of any, please let me know!

So what are peer-led services anyway?

Before we go any further I thought it would be useful to explain what exactly are peer-led services. I found an excellent webpage describing this on the Te Pou website. Te Pou is the National Centre of Mental Health Research, Information and Workforce Development so their website is full of useful relevant information on mental health in New Zealand, including academic research, services, workforce development and so on. I'll put a link in the column on the right for anyone who is interested to have a browse.
Basically, a "peer" in "peer support" or "peer-led" (sometimes known as "consumer-led") services, refers to services that are provided by people with experience of mental health issues, who have used services before, and who are trained to provide support/services to others (Te Pou, 2009). This is very consistent with the Recovery Approach, which defines recovery as a journey, on which there are those who have gone before you and there are others who will come after. So someone who is further along on their recovery journey can provide support for someone earlier on theirs. These quotes (from the linked page above) were from the 2009 National Peer Support Forum and sums up the importance/relevance of peer services very well:

“Its like asking someone who has never tasted apples or apple juice to describe the taste of apple juice to you”.

“If you were building a house, who would you want to help you? Someone who had read a book about building a house or someone who had done it successfully?”

Well, if it were me, I'd definitely want someone who's "been there, done that" to help me. I really like the description of someone who had "read a book" versus someone who had built a house successfully. It may seem a bit harsh to say so but essentially, I guess that describes mental health providers who aren't users and have been trained to provide traditional services. We've gone through the courses, done the training, read the books and articles, but we haven't "walked the walk".
Anyone with any thoughts on that? What if it were you?

Reference

Te Pou. (2009). What is peer support? Retrieved August 27, 2010, from http://www.tepou.co.nz/page/697-service-user-workforce-development+peer-support+what-is-peer-support