essential reading for anyone interested in human rights and mental health
Please read the review, featured on the last page of the magazine, for a simple overview of changes needed if our mental health act is to meet our international human rights obligations, such as the UN Convention on the Rights of People with Disabilities.
Hallucinations can be terrifying, enlightening, amusing or just plain strange. They’re thought to be at the root of fairy tales, religious experiences and some kinds of art. Neurologist Oliver Sacks has been mapping the oddities of the human brain for decades, and his latest book,Hallucinations, is a thoughtful and compassionate look at the phantoms our brains can produce — which he calls “an essential part of the human condition.” In this chapter, Sacks examines auditory hallucinations. “Hearing voices” has long been the classic signifier of mental illness, but many otherwise healthy people just happen to have hallucinatory voices in their heads, according to Sacks.Hallucinations will be published Nov. 6.
Findings from our Toka Tū Project will be coming out over the next few months including findings from focus groups held around the country with people who use peer support services. We wanted to find out what outcomes people want in their lives and investigate how the peer support service they use support those outcomes. As a teaser I have interviewed Sarah O’Connor, one of the project members about her involvement in the project.
Can you explain the Tōka Tu evaluation project briefly?
Tōka Tu is about understanding what resources and support peer support providers need to evaluate their effectiveness and so evidence their value. It’s a three-year project and focuses on three parts:
What does good peer support look like? How would an organisation know how effective it is?
What resources and support do peer services need to use outcome measures?
What outcomes do peers value and what contribution do peer support services make to these achieving these outcomes?
This hasn’t been done in New Zealand before . We know anecdotally that peer support is important to people but evidence about the value of peer support is limited. In order to get the evidence we need to understand what resources peer services need to evaluate their effectiveness.
There is a push for more peer services, from both the consumer community in New Zealand and at government level in Rising to the Challenge: The Mental Health and Addiction Service Development Plan. An evidence base will add weight to the call for more peer services. Participating in this project has shown me how valued peer support is. In a lot of incidences people have gone as far as saying that it saved their lives.
What Peer Support services are involved?
There are 9 Non Government Organisations representing 11 services involved from across New Zealand. They all provide peer support but do so in a range of ways including a warmline, a respite service, one-to-one peer support and group work. The organisations provide staff who then become co-investigators in the project.
We are developing resources through Toka Tū that services will be able to use in an ongoing ways to evaluate themselves . This includes trialing a rubric that evaluates the quality of the service according to criteria that the co investigators have developed.
The other part of the project involves implementing outcome measures in organisations. Can you explain what is an outcome measure is?
In simple terms it is a way a person can look at measuring change in an aspect of their life. By answering questions in an outcome measure people establish a baseline and then by repeating the measure at another time they can see if change has occurred. It gives people an opportunity to see where they are at in their life, and what areas they might like to work on. By collecting this kind of data from a number of people using a service it is possible to see what changes are occurring and what changes the service may be supporting.
Services have chosen their own measure to trial. It is important that the outcome measure is a good fit for the service, it can be difficult to find a tool that fits with a peer service. The different measures that the peer services have chosen measure different things, including quality of life, well-being, recovery and satisfaction with the peer relationship.
There is a lot more involved in introducing an outcome measures into a service than I initially realised, particularly for smaller organisations. Large organisations tend to have I.T support , and resources to support implementation of an outcome measure but smaller organisations do not necessarily have that.
Just about everyone has said how important peer support is to them. A lot of people have said in the focus groups that they didn’t find out about peer support for a long time, wished they had known about it sooner and that it needs to be promoted. I would definitely agree with this!
I noticed in the focus groups that the peers are connected to each other in multiple ways, through different peer networks and so there is a real depth and honesty in their relationships.
In a lot of incidences people have gone as far as saying [peer support] saved their lives.
What have you enjoyed most about this project ?
It has been very enjoyable visiting the different organisations and facilitating the focus groups. The peer services are so welcoming and they are very positive environments to be in. The peers are so positive, they want to be there and really value the peer support services.
Mutual support was evident during the focus groups , peers celebrated each others achievements, and demonstrated the reciprocity that is one of the core values of peer support.
For future updates about Toka Tū sign up to the mailing list.
Seclusion, forcibly confining or restraining a person in isolation in a room that is barely furnished, in mental health services has been in the media spotlight this week, following publicity about a young man who has been in seclusion 23 hours a day for the past 3 years. See article in the Dominion Postand this interview with his father on National Radio. It is hard to fathom how this situation can have continued for so long, or the degree of trauma he has experienced over that time.
It is traumatising for all involved and especially for the person being secluded. This trauma can have serious negative effects for many years
It can seriously damage any trust people may have in mental health services and diminish the likelihood they will seek treatment from them in the future.
The bigger picture is that we all have a role to play if the practice of seclusion is to be eliminated . If we, as a society, demand that people are “cared for” to keep us safe, we end up with a risk adverse mental health system , and in some situations extreme inhumanity and cruelty to our fellow citizens .
Mental health services are in a conflicted situation because the attitudes of and beliefs of many in our communities is that people who are mentally ill are dangerous and unpredictable, and need to be cared for within psychiatric facilities away from the public. This forces treatment facilities to become places of containment and social control and not places of compassion and healing.
If we are to eliminate seclusion from mental health services then all of us need to challenge our beliefs about mental distress and be open to alternative ways of supporting people. This paper provides some ideas about alternative ways of thinking and the Like Minds, Like Mine Programme is a positive step in challenging our attitudes.
Latest update from the Tōka Tu project – a Kites Trust supported project that is seeking to find out what resources and procedures support peer support NGOs to initiate and undertake evaluation as well as identifying what outcomes are supported by peer support services in New Zealand.
I wait for a response from Dylan, Ben and the Asian medical student I didn’t catch the name of but there isn’t one for which feels like a very long time. I sit with vulnerability strapped to my abdomen and a gut feeling that I don’t have any control here. I feel like a specimen being examined and the way Dylan looks at me as if he wants me to incriminate myself by being stupid. I don’t like the silence of the room but for some reason I lock onto the noise of a passing backfiring car and wish I could be out of this place.
Finally someone speaks “You’re well dressed, articulate and intelligent Richard and by looking at your notes and from what I’ve seen over the short time I’ve know you.”
“Thank you but I’d like you to come out and say it rather than giving me a long spiel. I’ve had enough of this illness already and the don’t know’s, the could be’s and the uncertainly of something not being right.” Although I meant what I said it is more because I want people to stop moving around the issue and being silent. I feel awkward enough as it is. I didn’t dress up for him- I did it for myself. But maybe I should have dressed down? Maybe I should have brushed my hair another way and washed my feet before putting new socks on.He says a few other things but I feel I’m on some sort of uneven ground here-something’s got to give.
I feel unarmed in a situation where I should be armed. It’s like I’ve turned up to a meeting about getting my head beaten in I’m so exposed. In the corridor I hear a few more people talking and I start to think they’ve probably known what’s wrong with me all this time but they have failed to tell me.
In the room there is a smell of recently eaten marshmallows and bread. I suppose Dylan had a late lunch before I turned up. Perhaps he looked over my notes and had his sandwich with his favourite on it while he diagnosised me. The marshmallows were probably a treat or a snack before getting into the life of someone he hardly knows maybe that’s it.
“I’ve read over your notes and from what I see today you are a highly functioning schizophrenic.” I only hear the words schizophrenic for what seems like a minute. What the hell am I some sort of microwave or protein drink? I say to myself. “So what does that mean for me?” I mumble. I feel the sadness lift from my stomach to my head and sit there like a leaf blown in a autumn day which lands evenly on a rock before you on a path. “Some people I’ve had have gone on to get degrees.” But am I capable of that Dylan? I mean do you know how sad I feel right now? Of course I can’t say this because it’s a shock to be examined like a tinned can opened for dinner on a special night and thought of as some kind of machine.
The post above is an excerpt from Richard’s Memoir in progress.
You can follow Richard’s progress on this memoir and other writing projects on his blog .
Anne Helm, from Wellington, received an Award for Exceptional Contribution to Mental Health Service in Australia or New Zealand at The Mental Health Services Conference of Australia and New Zealand (TheMHS) in Melbourne on 21 August 2013.
This Award was given “in recognition of outstanding courage and determination, and powerful advocacy for truth and dignity so that mental health services can move forward with humanity, social justice and effectiveness”.
Anne was a panel member of the Confidential Forum for Former Inpatients of Psychiatric Hospitals established by the Government, and advocates for formal acknowledgement of the Forum report, Te Aiotanga and for an apology to former patients to enable learning and healing.
“The physical, emotional, and sexual abuses need national acknowledgement. Everyone in our community needs to know what happened, acknowledge it and learn from it”, says Anne.
Also recognised at the TheMHS awards was Jim Marbrook’s documentary Mental Notes (Media Category). Mental Notes explores the secret, often shameful history of New Zealand’s psychiatric hospitals and adds further weight to the call for an official acknowledgement.
The fact that the report of the Confidential Forum sits in the archives of a decommissioned Department of Internal affairs website is telling. The people who spoke to the Forum did so to make sure that the abuses and substandard care that many of them experienced never happens again and for the system to learn from their experiences. Surely a formal acknowledgement from the government of their stories is not too much to ask?
The advocacy recognised by the TheMHS award includes Anne’s 40 year history of advocating for the elimination of seclusion.
The practice of seclusion, leaving a distressed or agitated person locked in a bare room, was described as traumatic by many who told their stories at the Confidential Forum. Locally and nationally there is a goal to eliminate the practice of seclusion in mental health services. Anne wants a date set as the target for achieving this goal. Anne appears in an educational video “Opening Doors” in which people who have been secluded, along with nurses talk about the harm caused by the practice.
“Seclusion leaves a person abandoned; it complicates the already fragmented state that one goes into the acute [psychiatric] unit with.”
Anne took her message of healing and learning from the past to the Human Rights Commission’s Diversity Forum in August, and spoke alongside members of the disability community fighting for acknowledgement of people with intellectual disabilities who experienced ill-treatment in institutions.
Capital and Coast District Health Board (C&C DHB) are reviewing the services they need to support addiction and mental health consumers. The reconfiguration is called Te Ara Pai.
They are currently in the second stage of Te Ara Pai project. Some services have been told their contracts end in June 2014 and C&C DHB are reassessing what they are tendering for. We understand these services to be:
Peer support services
Family/ whānau services
Drop in and day activity centres
This as an opportunity to reshape services available for those of us who experience mental distress and/or addiction. Approximately 30% of all mental health and addiction spend in NZ is allocated to NGO (non government organisation) services so this project is significant.
There have been some information gathering forums as part of this process, the third and final forum is this Wednesday 14 August 2013,9.00am-1.00pm, at the Westpac Stadium. RSVPs are to email@example.com.
What are the bigger vision and fundamental values sitting behind these changes? How can the wider community of service users, providers, family/whānau talk about where we are heading and what is important?
The ARC Group wrote a paper Transformational Change in Mental Health following their Mental Health Leadership Summit in 2012. In that paper there was a call for local DHBs to be transparent about how money is spent and where it comes from.
“If we do not have a clear vision of where money comes and goes, we cannot control the investment of resources.”
Transformational Change in Mental Health outlines a possible alternative vision. In this paper, Professor Roberto Mezzina from Trieste, Italy, outlines how they have based the fundamentals of their mental health system on the concept of citizenship. This involves uncoupling social control from mental health services.
Dear to our hearts, here at Kites, is the promotion of peer support. The values of peer support could also help guide the current reconfiguration. Peer support is an explicitly values-driven activity with values derived from the principles of recovery and the consumer movement. These values are outlined in a Peer Support Paper prepared for C&C DHB by Phoenix. Phoenix is an informal local group of people with experience of mental distress/addiction promoting their shared interests.
The values of peer support outlined in the paper are:
Self determination – the right to direct our own lives
Participation and equality – the right to direct our own services
Reciprocity – a two-way helping relationship
Experiential knowledge – the use of lived experience as a knowledge base
Recovery and hope – hope and belief in people’s ability to recover.
‘I’m not sick’ wasn’t just a realisation for me – it’s a mantra and a commitment. After years of telling myself I was sick, it’s taking a lot of repetition in my head to drill it through so that my automatic response when I’m stressed out and don’t want to face the day isn’t that I’m depressed again – that I’m relapsing. And not communicating that to others. It’s a constant reframing exercise relating myself back to the rest of humanity. I even have a playlist called ‘Co-misery’ which has songs on it from some of my favourite artists of confusion, heartbreak, fear, shame and sadness to remind me I’m not the only one. It sounds crazy, but for years and years I thought that people who weren’t mentally ill didn’t struggle with life.
Last night Chloe Waretini was a guest on The Nutters Club NZ radio show and that led me to discover her fabulous blog.
Access to services and support is often via a diagnosis but services do not have a formal process where they say you are fixed. Choosing to remove the illness label in our own minds, like Chloe has done, is a very empowering thing to do.
The question that Chloe’s post raises for me , and it comes up in discussions between consumers from time to time, is when do we stop being mental health consumers?
If I don’t use services for five years do i still qualify as a “service user”? If I have not experienced mental distress for some time does my previous experience remain a major part of my identity?
Maybe, maybe not. Personal choice I guess.
For me anyway I will always have a common bond with others who have experienced mental distress . A bond based on the knowledge that we can wake up on any morning in a difficult place emotionally . Yes I may have tools and skills to help me regain my equilibrium over time , but that experience of vulnerability or uncertainty is one that I share with other consumers/ people with experience of mental distress/ survivors.