KEY POINTS:
Hayley Sher, a survivor of sexual abuse, married with two children, represents the new face of mental health care. She's using her experience of mental illness to help others.
Training was difficult. She'd just recovered from a bout of depression - a lapse triggered by the death of her father which brought up painful, un-resolved memories. There was anxiety too, about driving to the course in the rain, something until then she had avoided at all costs. During the sessions about suicide she had to deal with flashbacks to her own attempts as a teenager.
Sher works for the rapidly growing Mind and Body Consultants, an Epsom-based organisation with 45 staff . The work isn't for everyone. Necessary qualifications for the job are experience of mental illness and a willingness to declare that to the world.
Says managing director Jim Burdett: "I lead an organisation composed entirely of mad people, seriously mad people - labelled as schizophrenic, borderline personality disorder, bipolar, depressed, whatever - and it works."
"We tell people, when they apply for a job, they'll be coming out of the closet. Plus they'll be presenting to clinicians about the services we provide - standing there as a mad person telling some of their story."
So the lunatics are literally running the asylum. Well, part of it. Mind and Body has $2 million worth of contracts to provide a variety of services to Auckland, Waitemata and Canterbury district health boards, the Ministry of Health and Mental Health Commission. The bulk of those are "peer support" contracts, which, in bold Burdett-speak designed to claim back hurtful words, means "a positive, purposeful, relationship between two mad people".
Sher's suicide flashbacks were to an upbringing involving physical and mental abuse and being bullied at school. "As a toddler, I remember being swatted, simply for being in the wrong place at the wrong time. My mother's favourite phrase was: 'you're going to be stupid all your life'."
Sher attempted suicide twice as a teenager. Since then she has had bleak thoughts but has never acted on them. "The kids and my husband keep me going. I may have those thoughts and feel myself sliding down again, but I have so much support around me now I know how to get out of it."
Suicide. It's a topic never far away from any discussion on mental health. Burdett and many of his staff have contemplated it at some stage.
While working at Mind and Body, Catherine Dakin took an overdose early last year, recovered and is now a team leader (see story below). "Catherine's experience is the sort of thing that created the basis for the service we provide," says Burdett. "It grew out of really heartfelt experience."
Details of suicides are rarely reported, the concern being that to do so will sensationalise the act and lead to more suicides. What is in the news lately are stories about unusually high rates of suicide among in-patients at several DHB mental health units, plus some stories of people using DHB services and despite warnings they were at risk, killing themselves.
The issue highlights a fundamental difference between the new and old face of mental health services. One is paternalistic and assumes people need to be controlled and looked after. The other, known as recovery-oriented services, assumes people with empathic support and encouragement can live full and meaningful lives.
The concept is challenging because autonomy, the right for people to run their lives as they choose, logically includes the right to precipitate their deaths. "I have absolutely no problem with people who are trying to harm others being locked up," says Burdett. "But making somebody stay alive who is finding their life unbearable is, ethically, a completely different issue."
As he points out, the statistics show the mad killer is a rare event, whereas people harming themselves is not.
The latest statistics (for 2005) are not good - 502 deaths, nearly 100 more than the road toll that year. The suicide rate - 13.2 deaths per 100,000 population - puts us near the top of the list when compared to other countries. Among 15-24-year-old males, the rate is 27.6, second only to Finland (33.1). Hospitalisations for intentional self-harm also make grim reading: 5400 cases in 2006, a rate of 151.7 per 100,000 population.
But while people killing themselves goes with the territory of mental illness, Burdett's approach is to respond with empathy and optimism. "Suicide is the result of despair. What we do is counter the despair, give certainty there is light at the end of the tunnel. The only other choice is to imprison people so they can't kill themselves."
The problem with the "lock them up until they're feeling better" approach is that it compounds the despair. "It's a horrific and traumatising thing for a person, guilty of no crime, to be deprived of their liberty and put into solitary confinement by physical force. What peer support is saying is there is always hope. We demonstrate that by our own example," says Burdett who has had a 15-year battle with depression and anxiety.
There's also a logistics problem with imprisoning those prone to suicide. Close to 90,000 people use secondary mental health services - services beyond primary care such as community mental health centres or hospitals. Given that a large number of that group is likely to contemplate suicide at times, the question becomes, who do you lock up, when and for how long? Then there's the issue of space - it's impossible to lock up 10,000 people let alone 90,000.
Mind and Body's peer support contracts with the Auckland DHB got a boost following a Ministry of Health decision to cease funding level one and two supported accommodation providers. The decision was an acknowledgement that the funding mechanism for beds was keeping people stuck where they were rather than supporting them to rehabilitate.
The change, focusing on social inclusion rather than institutional care, resulted in some community-based group homes becoming boarding houses and some residences provided by a supported landlord.
The significance for those living in such homes was that they could choose where they wanted to live, enjoying the rights and responsibilities of tenants and control of their own money. Mind and Body's job was to support people in this new freedom, to realise their dreams and aspirations.
On a Wednesday afternoon at a Mt Albert cafe there's a glimpse of how it all works. Ben Weaver and Dan Beck meet here regularly. Weaver is a peer support worker. Beck, 34, diagnosed schizo-affective (schizophrenia with depression) has recently moved out of a level one home to his own place. Before that he spent six years in level three accommodation.
"It's the lowest form of living. There is no way I'm going back to that," says Beck. "There is nothing to do. You just sit around bludging cigarettes off each other, and once they are all gone then you're up the road picking up cigarettes off the ground.
"People would get in your face because they would get bored and just go around hassling each other. The staff would just treat us like: 'Take your f****** medication.' You just didn't feel like a person. It had its good points - you had a bed to sleep in. But you couldn't live how you wanted to live and you were in poverty, you got $50 a week. It was miserable."
With Weaver's help Beck has figured out what his strengths are and set goals, which include completing a year-long certificate in live sound. When he finishes he wants to get a job - he says he's sick of being poor.
He's also developing an awareness of his illness and the warning signs of an episode. "Usually something will kick it off - an argument with someone or something. Then I'll start spinning out. I had one on the weekend.
"I find if I'm in negative space people around me start getting negative as well. It's like they start having a go at me. Then you start going down and down and down and going crazy."
The day we meet Beck took a day off school and found he didn't spin out. "Do you see how much a big step that is?" says Weaver. "Because for me, I'd have a trigger like that and that trigger would set me off on a voyage that would end me up back inside."
Beck understands the significance. "It's kind of wisening up. I'm not going to let the same dog bite me twice. It may be that I am getting well because usually I brood: 'Oh, my mate left me, my girlfriend left me, now I'm going to kill myself'.
"Usually I just spiral down and it's a big dramatic Hollywood scene. I'm known as being a drama queen. I'm not violent but I can get aggressive and really hurt - an act I do to try and protect my own feelings. The neighbours asked me to come over for a beer. I said no because I knew if I did, the situation could get heavier - so I guess I pulled myself out."
Burdett says it's about developing rapport based on empathy and commonality of experiences. And it's about individual choice.
"We talk to people about their strengths, hopes, dreams and aspirations. It has a positive focus that leads towards a life where you stay alive because it's good to be alive. If you have everything you need to live well, the fact you hear voices is only relevant if they get in the way of making those choices."
THE DILEMMA OF 'TO BE OR NOT TO BE'
Catherine Dakin's qualifications to become a peer support worker were her experience of mental illness - diagnosed variously as chronic depressive disorder and borderline personality disorder - which began in 1995 after her son was born with Down Syndrome. Early in 2007 she took an overdose.
Much of my experience of mental illness seems negative - a lot of your life feels stolen. Peer support provided a way of using that experience positively to connect with others and to offer hope.
Early in 2007, for a number of reasons, I was feeling hopeless. I'd been busy finishing the second year of my degree in Social Practice at Unitec, maybe there was a bit of compassion fatigue at work. I was struggling at home as a single parent and feeling burnt out.
I'd been in hospital respite care which had not gone well. A friend took me home and after she left, I decided to take the pills and go to a beach close by. I remember an incredible sadness and hopelessness - a feeling that nothing would change. There was a sense of injustice too - that things had been unfair and weighted in the wrong place. I felt powerless.
It was the third overdose I'd taken - the worst one was the first after my son's first birthday. That's the problem when it's happened before, suicide becomes like a default position for when things are really terrible. It wasn't a huge overdose, but the intention was there. Why, when I feel powerless, do I then become more invisible and want to completely disappear? That doesn't make sense.
One of my daughters popped into home and saw the packets of pills and I'd left my will out to make it easier for people. I had taken my phone. Afterwards, the psychiatrist said: "Why take your phone if you really wanted to kill yourself?" I said: "Because there's a part of you that doesn't." Leaving three children without a mother is an awful thing to do. I'm not wanting to think about it too much. I do remember incredible agony, incredible pain which I wasn't able to escape.
The dilemma for someone like me who is a parent who really does love her children is like Hamlet - " to be or not to be". The effect of it on my children would be absolutely traumatic. So a terrible conflict happens. Ultimately, though, you do have the choice.
I turned my phone on and got a message from my sister-in-law. I rang her and said: "I can't do this anymore." The crisis team came later to the house. I didn't want to go to hospital and asked whether I had a choice. They said: "The way you've been, we would probably sign papers to make sure you do go."
Years earlier I had been in the Connelly Unit and hated it. Te Whetu Tawera is a much nicer building - you have your own bathroom. But culturally, some nurses have not shifted a great deal. The doctors were very good. They did their best to understand me, not just giving me medication but giving me choices about that. They realise that people who are isolated in a hospital really struggle when eventually they have to go home - so the idea is it's better to be going home a little and often, if you can. Even though you're frustrated with being in there, its scary to come home as well, you feel very vulnerable.
There are a lot of unwell people in there - people yelling and swearing at each other. That's quite hard to handle when you've got up in the morning and someone decides to take a swing at someone else at the breakfast table. Suddenly the bell is ringing and six nurses are jumping on top of somebody. It's upsetting for the people involved, but also for the people witnessing it.
Having peer support with Hayley [Sher] at that time was fantastic - a reminder about the things I was capable of, the strengths I had and the hopes I'd had, even though I'd forgotten them. Hayley understands what it's like to be depressed.
It took six week to get home. I was very fragile for a long time and made a slow transition back to work. I don't think it would happen in any job.
I reached some understanding. Depression is another problem to be solved, negotiated and learned from rather than something to be seen as hopeless. I've come to the realisation most things can be sorted out. Hayley reminded me that the depression is just a part of who I am - that there is so much more.
SKYDIVING PIECE OF CAKE COMPARED TO THIS
In 2006, while working as a university tutor, Graham Panther had a period of "mental distress" - the term he prefers because he says it's an experience, not an illness. What he had was severe anxiety and panic attacks - described in text books as de-realisation.
"It's not a psychotic thing - you're painfully aware that you are real, you just don't feel it. Your cognitive parts are functioning, but something about your senses is different . . . you know how weird it is, but you can't make it stop. "
Panther, 24, has a masters degree in film and television. He joined Mind and Body last year as a peer support worker and is now involved in a "Like Minds, Like Mine" contract for the Auckland region.
Designed to reduce the stigma of mental illness and the discrimination that goes with it, the project includes workshops with health providers and a website resource for family and friends of people experiencing mental distress. The aim is to provide alternative perspectives to the medical diagnosis of mental illness. "A big part of our message is the way that madness makes sense in a context. To bring it back to my own experience, in the context of intense anxiety, it made sense to dissociate from that in a way, to have those unreal feelings."
Panther's alternative for dealing with his mental distress, was to do the opposite of what his psychiatrist told him. The insight came when describing how watching the cult 1990's American TV series Twin Peaks made him uneasy. His psychiatrist said not to watch it anymore. "Who doesn't feel uneasy watching Twin Peaks?
"I realised if went down this path I would have nothing left. I decided to think about my anxiety and panic attacks differently. What if I invited it? I decided I should try skydiving.
"My options were to shy away from what freaked me out and have my boundaries get smaller until I just stayed at home or to do what freaked me out. Having dealt with panic attacks, jumping out of a plane was a piece of cake."
He was fortunate in having plenty of people around him willing to hear about his distress on his terms. "Peer support is nothing new. What is new is that we're making it standard."
He points out that many - especially those who have been in institutional settings for a long period - don't have the support networks he had. "You know people must be getting sick of listening to you and you think, 'I don't want to be going on and on'." Having someone paid for providing support takes away the guilt.
Peer support reinforces positive attitude
Kay's* journey with mental illness goes back to the '70s. While she welcomes the new attitude expressed in the "Like Minds, Like Mine" ad campaign, she also knows that for some, mental illness is still something to be locked away and never spoken about.
I began to get severe depressive episodes when I was 15. Things were very different in the '70s. You were hospitalised, medicated then put back in the community. People had a terrible fear of mental illness. You pretended it didn't happen.
I was diagnosed acute schizophrenic. I also had episodes of psychosis, which can occur in severe depression. I withdrew from the world and really just went crazy in my room. I was self-harming, paranoid, believed people were trying to harm me and felt my body was changing into an animal.
I was given sleeping pills and told to take them whenever I felt like it. In hospital I had deep sleep therapy and was threatened with shock treatment. I actually had a 15-year career in banking after that. I was still severely depressed and there were times when I had to be off work as I had overdosed and was admitted to hospital.
In 1992, I lost someone very close to me in a car accident. I had been seeing a psychiatrist and agreed to have ECT. It was magic. Suddenly I was alive. It was the first time I could understand why other people wanted to live. I had 16 ECT treatments. I would have been quite happy to have ongoing ECT, but it really wasn't an option. There was a lot of adverse reporting and concerns about using it. The positive effect didn't last. I had to back it up with medication.
Over the last few years, with peer support, I've been able to move into my own place. What peer support has done is reinforce me, help build my self-esteem and trust. I have found working difficult. It's fine on your good days but there are not many jobs where you can work just on your good days.
My first peer support worker, Hayley, introduced me to voluntary work. The experience has given me the skills to go back into the workforce.
I haven't told my workplace about my mental illness. There are still members of my family who don't know about it. It's complicated and tied up with my brother's suicide. He was in a respected profession and a very good rugby player. If he had been able to see John Kirwan on TV, things might have been different.
No one thought for a second that my brother was the sort of person who would get depressed. All of a sudden he's gone and committed suicide. I think about all my overdose attempts and that I've survived.
Some members of my family don't talk about it. My preference is for the next generation to know. "Men do it properly," my sister said. "He probably didn't want to end up like you."
*Name changed for privacy reasons.
