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.

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!

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.

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 

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

Hello, and welcome!

Today marks the birth of this new blog, which will be a journey of exploration into peer-led mental health services in New Zealand. This is an area of mental health services that has recently begun to emerge in the country and I came across it last year whilst on placement in the capital.

Over the next few posts I will introduce you, the reader, to how I came across this phenomenon, I will attempt to uncover the history of peer-led mental health services in New Zealand and what's been happening so far, I will poke my nose around to find out what's currently available and I will try to make some sense of all the information and ponder what all this means to me, and what it might mean for the mental health sector. And along the way I'm sure I'll come across interesting links, websites and other resources too.

Hope you enjoy the ride!