Looking back, and looking forwards

I have been chatting to friends and reflecting on what I have learned through writing this blog. From what I gather so far, the benefits of peer services outweigh the limitations, and like anything else there are issues that will have to be considered and new ways of doing things developed.
A study of prison peer programmes (Devilly, Sorbello, Eccleston & Ward, 2005) highlighted good outcomes through provision of peer support programmes in substance abuse counselling and reducing self-harm/suicidal ideation. It mentions risks of 1) prisoners rejecting peer support due to negative stereotypes 2) health professionals being alienated due to preference for peer services. To me both of these illustrate how new services and new paradigms require rethinking roles and relationships. Issues of education for peer supporters will have to be sorted out, as will support for the peers themselves. A more difficult issue may be that of conflict of interest/accountability. If a service user reveals violent or criminal intent, whose "side" is the peer on? Other than trying to persuade the user not to proceed, are they equally bound by loyalty to fellow users as they are bound professionally by confidentiality laws?

My opinion on all this is we are generally headed in the right direction, increasing the rights and empowerment of service users, supporting people's recovery journeys, enabling people to make connections with others and contribute to the community. All this sits well with my philosophy as an OT, enabling people to make their own decisions, empowering people to find their unique solutions, supporting people to participate in meaningful activities, such as work, social contact, reintegrating into society. Giving people the support to find personal solutions to their problems and then enabling them to help others do the same, there's a sustainable process which holds much promise, especially since there will always be more users than healthcare staff. There will be some issues to rethink, but they are merely teething problems, such as working out new relationships, roles and accountability processes within the user-peer-staff triangle which could replace the old patient-staff relationship. As Mary O'Hagan says in the video in my previous post, all stakeholders' perspectives have to be considered - users, staff, families, and now, peer workers as well who are both users and staff.
OTs have a role in facilitating this phenomenon for mental health services because we believe in occupational justice for traditionally marginalised groups, we believe in enabling people to take control of their lives, and we acknowledge that every person is unique and we don't have the answers to everyone's problems, but that they do, and they can find these solutions with support from us.
Anecdotally, when I think back to my first mental health placement, I see a stark difference between users who believed they could help similar others and users who didn't. The first group was enthusiastic, productive, positive, excited about the future, even though they might have had symptoms. They infected me with excitement and anticipation of all the positive changes that were in the pipeline and I felt enthusiastic and hopeful. The second group didn't have any meaning or structure or hope, and didn't feel they could contribute anything, or didn't value themselves. Sometimes they refused to do self-care even though they had done it before, they claimed they couldn't do it, or said "What's the point?" That hopelessness and lack of a future to look forward to made me really sad and discouraged. If peer services can help in some measure to transform the second group to the first, then as an OT I really want to be part of that process.
Reference
Devilly, G. J., Sorbello, L., Eccleston, L. & Ward, T. (2005). Prison-based peer-education schemes [Electronic version]. Aggression and Violent Behavior, 10,219-40.

Mary O'Hagan recounts "pills, pillows, patriarchy" of her experience

Look what I uncovered from Mary O'Hagan's website (emphasis mine; I'm sure some of you will recognise her name on mental health articles/reports)...
Mary was:
•    an initiator of the service user movement in New Zealand in the late 1980s 
•    the first chair of the World Network of Users and Survivors of Psychiatry (1991-95)
•    an advisor to the United Nations and World Health Organization (1997- 2004) on disability issues as they relate to people with major mental distress
•    a mental health commissioner for New Zealand (2000-2007) – the highest government position held by an openly identified service user in any country.
That answers the questions: When did peer services begin in NZ? and How does NZ stand amongst other countries in public/political acceptance of mental health service users recovery and contribution? Go NZ!
Here is a video of her talking about her negative experience of traditional mental health services she received as a user and the role of the Mental Health Commission.

Reference

O'Hagan, M. (2010). Leader and recovery expert with lived experience. Retrieved from http://www.maryohagan.com/mental-health-rights.html

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

What services are out there?

A search on what peer led services are out there in New Zealand at the moment brings up all kinds of links. There are big community organisations/NGOs (such as Pathways, Richmond New Zealand) that provide peer services as part of their larger package of care and there are smaller groups throughout the country with various target groups.
I was quite interested to find out however that there is a national network called Balance NZ that is a consumer run initiative that works as an umbrella organisation to regional peer led networks and targets people living with mood disorders. Balance NZ is a very new initiative, which sprung out of recommendations made following a peer support forum in 2009. I think that's awesome! It's really exciting to see that the peer led service movement is really taking off in New Zealand and as peer-run services really sits well with the Recovery Approach that government policy is pushing, I think the sector is well-poised to really develop and grow and spread far and wide! :) You can see a list of all regional services here.
In my next post I will talk about "recovery" and try and explain why I think peer led services sit well with this approach to service delivery (which we in NZ are adopting)... Stay tuned!
Meanwhile I've put in a link to more information about the peer support forum from the Te Pou website and also, there are videos of peer supporters talking about their stories as well, I can't embed them but here is the link.