A LIFE BEYOND PSYCHIATRY
THE MENTAL HEALTH SYSTEM
The mental health system is not all it pretends to be. This is not news to many who attend this conference. Once it gets a hold of you it does not want to let go. It may alleviate depression for some but its interventions do not cure people usually in the long term. This talk centres however around severe mental distress, those categories of mental distress which usually persist for a lifetime with periods of only partial recovery. For those who have psychotic labels psychiatry does not ever want to let go and it can enslave people’s lives by taking control of them and taking measures which restrict them. Many of its treatments are debilitating and some of them shorten people’s lives. There is a great deal of social control and the forced administration of psychiatric drugs is an integral part of this. In mental hospitals human rights are suspended and treatment given by coercion and force. There is no freedom and virtually nothing to do and no privacy. Day centres are in part places for monitoring and controlling people. What is done by the system is always pedalled as therapy but its therapeutic value is often dwarfed by the social control it represents.
For people who have less extreme forms of mental distress there is some room to choose whether to be treated. For others this is not the case. Unfortunately, especially for these people, it can be extremely difficult for them to cope at all or impossible without taking psychiatric drugs. The more this is true the more pernicious are the drugs on which they tend to be dependent. There are some who subscribe to the view that anybody can stop taking psychiatric drugs and break free of this system and once again be part of society. I have reservations about this point of view.
I have been labelled variously schizophrenic, schizo-affective and bipolar – take your pick. I have tried on several occasions to do without antipsychotics but I have failed sooner or later every time. This experience is shared by many more people than those who share the experience of becoming drug free. I am not convinced that I could be weaned off these drugs successfully. The bottom line for me is that I do not want to be in an asylum – ever again. If the price I have to pay is a reduced and shorter life then it is a price worth paying because in my estimation a lifetime in and out of asylums is a terrible fate. I take their drugs to avoid contact with them.
There are other things which can help serious mental distress, even cure it in some cases. But these things require time, space and much human input. Given the huge numbers of people with mental distress and the conservatism of the system, we are looking a long way into the future to provide these things for all. I have to make my choices given what is available now, however hard those choices are.
I stay clear of hospitals, day centres, counselling, cognitive behavioural therapy, ECT, lobotomy, patronage and lies. I see a psychiatrist about every 4 months, albeit briefly, and the rest of the time I get on with my life.
The system works to a large part through the pedalling of fables. They withhold information about what they are doing and why. They never go into detail about what they think is wrong with you. They tell palpable lies about such things as why you are getting certain side effects from the drugs and what the drugs actually do. I am told that my memory is poor because I am getting older and that the drugs replace a missing chemical in the brain. I know my memory would be a lot sharper if I did not take antipsychotics and I know they do not replace anything in the brain – rather they block some of its activity, notably the bits that make me feel good. The system works on the basis that I am too feebleminded to embrace reality. They put a spin on their treatments in order to reduce resistance to what is in the final analysis being forced on me. Under the new mental health act that force, out in the community, will become increasingly overt which may reduce people’s leverage to negotiate treatments.
The system is utterly impersonal and few apart from those who dissent within it show anything other than coldness. The scientific approach has a lot to do with the cold distance they keep as well as their own fears and inability to relate to us. One of the biggest things lacking in people’s lives if they find themselves with many kinds of mental distress is human warmth. The system is also the very author of stigma and I find it laughable that it should see itself as the solution to it. If the system were really doing us any good as opposed to managing chronic conditions as it sees them people would be moving out of it, cured. But this is not happening.
WHAT I THINK ABOUT MENTAL DISTRESS
I do not subscribe to the medical model of mental illness, such as it is. I do not believe that we are genetic freaks. I believe that what gets us into even the most abstruse states is 90% injury, even 100% for some. Whatever it was about us that may have led to difficult situations arising, bullying or worse has been compounded many times over before we go mad. Probably in many cases people are entirely the victims of circumstance. Nevertheless treating a problem as one of injury rather than illness may not make intervention any easier and there may be a place for drugs analogous to the reason why you might take morphine after a car accident.
A LITTLE MORE ABOUT MY SITUATION
Figures from the USA suggest that those with the label schizophrenia over there live on average as much as 25 years less than the general population. Although we have a better welfare system than in the USA, we have our fair share of rooflessness, drug abuse and poor diets amongst those put in this category. It would not be unreasonable to suppose that the situation is not a great deal better over here. Antipsychotic drugs have been cited as being the biggest single cause of this loss of life expectancy, the main killers being heart attacks and strokes related to these which account for more deaths that suicide, according to one report I read.
On this basis, taking this demographic broadly, I have at 54 reached my life expectancy. I may last some time longer since I do not take illegal drugs, drink heavily, eat unhealthily or live on the street. But many of my friends are in a poor state of health who are my age or younger and live a similar life style. I do not expect to live to 80.
THE TRAP OF INVOLVEMENT
Although I have done a lot of involvement in the past I have not done any significant amount for 10 years. I was always sceptical about the degree to which I would be listened to by Health Authorities, doctors, nurses and even mental health charities. I was interested to get behind the scenes a bit and get a better idea as to how the system worked. While service users can make some impact on august committees it is not often translated into practice at local level in psychiatry, where it matters. It can be hard work and an uphill struggle to influence these committees not least of all because one tends to be in a minority if not alone. One committee where I believe I did have an impact was the Working Party of the Nuffield Council on Bioethics for their report “Mental Illness and Genetics – The Ethical Context”. There were geneticists and psychiatrists on this committee who had a monopoly on the scientific and clinical information. However there were moral issues and issues of interpretation of data to which I could address myself. I felt marginalised and if it were not for the help of another member of the party, who was a non-medical professor, who advocated for me at times, I do not think my analysis would have had much impact. As it was the role genetics might play in the future of psychiatry was, I think, put into a better perspective in the report than it might have been had the doctors and scientists had a free hand. I hope the report had an impact. I am pleased to say that the establishment of a genetic basis for schizophrenia has not progressed much in the ten years since then. That at least has made it difficult for the proponents of eugenics who would have us aborted. I ask myself however when are the rank and file of psychiatry once again going to seriously address themselves to the social and interpersonal causes of mental distress?
While I was on the Nuffield working party I had a brush with one of the psychiatrists which illustrates how easy it can be to fall foul of them. The question arose as to what was special or different about mental illness. I quite innocently remarked that the mind was the centre of one’s being. A professor of psychiatry immediately seized on this and started to imply that I must hold some religious views to say this, which, as we all know, equals delusional beliefs if you suffer from mental distress. A professor of moral philosophy put her in her place. But such is rank that without his support I would have been on sticky ground.
SO WHAT DO I DO?
I do not like or believe psychiatry, I’m disaffected with involvement and I am, to coin a phrase, socially excluded. Where do I go? In the early 1990s I had discovered the group Voices, as it was then. I gave up all committees apart from this one after 1998 to concentrate on a fundamentally independent voice for those deemed to have the most severe forms of mental distress, a distinctly marginalised group who do not always show prominently even in the service user movement. Voices, as it was originally called is a quasi-autonomous service user and survivor organisation within Rethink (formerly NSF) now called National Perceptions Forum. It is very independent and Rethink do not interfere with its setting its own agendas and managing itself. When I first joined I found that this was indeed a forum where I could meet people away from the gaze of psychiatry. It was amazing how much more freely people talked in the local Voices group than in the day hospital which I had attended. I soon became involved with the National Forum and became first Treasurer and then Chair, a position I have held on two occasions for a total of over 8 years. In its earliest days it was basically a discussion group for people labelled schizophrenic which met in London. It was more about giving voice than hearing voices. People from NSF sat in on the earlier meetings but the patients were in control and eventually met without them. Voices developed into a network of local groups which met to socialise and for support. After Community Care was introduced more groups were set up by statutory services which were better funded than ours and we found it harder to establish new groups. We now have many fewer local groups than we once had. When I became Chair I felt we needed a way of pulling the whole membership together including those who did not belong to local groups. There were increasing numbers of these members. So we started a magazine made up of contributions by members where ideas and experiences could be shared. This developed into being a forum also for creativity in the form of poems, cartoons and artwork. We ran several conferences about empowerment and self-management (in the broadest sense). We also ran poetry competitions, developed a website, produced leaflets and were a source of people who wanted to do involvement. Lately we have started making DVDs. We were at times funded by outside funders but eventually were adopted as an integral part of Rethink and funded by them.
National Perceptions Forum amounts to a loosely knit alternative network to the service based one. This is not to say that many of our members do not have CPNs or go to day centres but that is separate. People will ask why should we want to associate away from ordinary society? The simple answer is that we feel very marginalised by it and not on an equal footing at all very often. We have become fed up with banging at its door and having it shut in our face. I’m not saying it’s all society’s fault. We can be awkward. We have a comfort zone in each other’s company where we are not made to feel out of place.
Some people with mental distress are only too keen to reintegrate with society. Many of them do not have all the problems we in National Perceptions Forum experience. There are different forms that mental distress takes and some of them are much more acceptable to society than others. Those who would lump us all together in my view are in denial. We are not all the same.
The Government would have it that people deemed to have severe mental illness should be sent out to work. The people I know are scared stiff by this. They do not view it as an opportunity but as the road to hell. They expect to be ill-treated by other workers and find themselves back in the asylum, even be driven to suicide. As far as the anti-stigma campaigns go, when it comes to us they are all but a waste of time. And we do not believe for one minute that such campaigns will in any way ensure a smooth transition for us back into the world of work and society. Anybody who believes that they will is themselves in need of the National Health. It’s not as if we have not tried. But it just does not work. It is time that the Government showed some compassion and allowed us to live our lives in peace. We have enough to contend with.
Regardless of what people who would put themselves above us might think we have carved out our own space. We have many very creative people who share their work. A few of them are professional artists. There is some work on display here today which I hope gives a feel for the creativity of people who are often seen as useless.
We propagate ourselves to the world through the internet. We have compiled a large website with over 300 web pages with many articles, poems and artwork which have previously been published in our magazine. There is also a lot more, even downloadable music composed and played by a couple of us.
We need our own space and to do things at our own pace. There are many basically gifted people who are members for whom there is no outlet in the wider world because they are slowed down by antipsychotics, have particular problems relating to people and are otherwise prevented from competing. But I think what they do is good and needs an outlet. It would be cruel to make them do menial work so that it could be said they were earning a living. If they did not have the distress they would be capable of much more. They find empowerment as I do in an alternative network.