My first reaction when asked to give my vision of mental health services 25 years on from now was: - great, a chance to indulge myself, an opportunity to think of seemingly impossible changes, a means to leave the fetters of reality and think truly creatively.
I have wondered about my talk for the last few weeks and keep finding myself caught between the pessimistic; the continual cuts in funding, the growing ostracism of people who dare to be or are born slightly differently to others, and the increase in systems for controlling us, and the perceived threats to the general public.
Then I go the opposite way and think of stigma fading into oblivion, I think of the responsible use of genetic discoveries connected to Schizophrenia and manic depression and I think of help being available when we need it.
I'm afraid that my talk will be a mish mash of the two, I do not dare to dream too optimistically but I am fed up at just looking at the faults in the systems that are there to help us.
The main part of my job is to work with the Highland Users Group, which I set up two and a bit years ago. It has 160 members now and ten branches scattered across the Highlands. We look to the future and write reports on subjects ranging from ward rounds to employment, that we then discuss with Health Boards, Trusts and Social Work departments, in an effort to achieve change. A little to our surprise, we have had a big influence on services in the short time we have been around.
We have had an impact, but then I see very few people's lives changing directly because of what we have said should change. When I think of many of our members, I hear a comment repeated again and again:
"I just take it a day at a time. IF I can get through the day O.K., then I am lucky".
And when I think of this comment I wonder that I dare to have a vision for the future.
When I think of myself thoughts come to me with a passion that surprises me, even though I have been moderately well for a long time. I think; give me peace, give me freedom from my worries, let me laugh and talk and let me look forward to life without fear. If I had a vision for achieving that, I think that I would become very rich.
Let us go back to the comments of so many people with mental health problems about just making it through the day. Why is it so hard for so many of us to see further than the next day? Why do so many of us live with hope and the future existing as a blank sheet, that cannot be possibly filled or even peeked at though crossed fingers? Most of you will know the answer to this but let us just go back to this huge problem of motivation that so many people with mental health problems find problems with.
Mental illness or mental health problems whatever you want to call them, almost inevitably have symptoms and features which make it hard to carry on. I remember the days sat staring straight ahead just summoning up the energy to smoke my cigarettes and drink my coffee, I remember my wife crying and telling me that I had turned into a stranger and could I please talk to her about something, anything. Could I just show some spark of life, something that would give us a wee bit of hope.
I am tired of finding friends in hospital or watching them move into hospital, as their voice slows and their belief that they have any value at all to anyone dries into a tight kernel - untouchable, unreachable by themselves or by us, their friends and relatives.
When you look at these emotions, when you know that they are likely to occur again and when you are sat up at three in the morning and know that you won't be able to get up the next day, it is easy to see why you begin to wonder at the point of looking to the future.
There are new drugs and new theories and new genes being discovered as ways of helping or controlling or stabilizing our various illnesses and I am grateful for these. They will as they develop, make my life better. Already I am on one of these new atypical major tranquilizers and feeling vaguely guilty that I am costing the NHS so much money and vaguely guilty that if these new drugs are the wonder drugs that they claim to be, that so few people are getting them.
I also wonder, I wonder about our emotions and I wonder about the advances in drugs and our rejection of sadness and fear and ordinary misery as valid feelings to have, and I worry that in the future we will not only subdue mental illness but also all those so called negative emotions that make our life wholesome and real.
I worry that when they discover the genes that contribute to the development of schizophrenia and manic depression, that instead of being a breakthrough for future generations, that we will go back to the old theories of eugenics; that public pressure will call for us not to have children and that the children we do have will be monitored as they grow up and singled out as different and that we will be allowed only certain kinds of work and certain types of insurance.
I do hope that advances in drugs will stop the dreaded haze and the muzzyness and stupor of sedation; the side effects we so commonly experience. I have recently switched drugs and in the change over period from one drug to another. I was on four times my usual dose, the struggle to get up in the morning, to function, to show a bit of brightness.
It was not like those times when the dose meant that I could hardly move when my conversation was dragging itself some meters behind everyone else's, but it was bad enough. Looking to the future, our very treatment can take away our futures. Sometimes I forget my drugs I know I shouldn't but I feel so alert when I do. In the highlands we have a growing information project about psychiatric drugs as a response to our report on medication.
I feel so glad that I have plain English leaflets about my drugs, that I can phone whenever I have a question, that I was given choices and ultimately that if I stop taking drugs it will have been from a position of knowledge for which I have taken responsibility.
When you look ahead, when you think of your future you tend to do it with other people. You think of changes in your community - what your children will be doing - what your friends will be doing and yet this is hard to do when your illness is unmentionable, when to be tainted by schizophrenia marks you out as someone worthy of alienation and ostracism.
In the Highlands most people know each other. You cannot hide mental illness like you can in a city. For some people this has meant abuse by the community, having people cross the road to avoid you, being spat at, having stones thrown at you and having your friends desert you. Much more common is that people are very well meaning but hesitant about how to talk to you or so concerned for you that you become different because of their well meaning attention.
When you feel the disgrace that stigma means it can be too painful to look to the future. It is so lonely because no one understands and so many people have revised their opinion of you to the point that you will be looked after, but not a full citizen of your own social circle, from which grows the hopes and fears of life together.
In HUG we have been fortunate to gain funding for a worker to help us challenge stigma in our communities, with employers and with the people who are meant to help care for us. That person will be in post within the next few weeks and will be able to help us with our mental health awareness training that we are already doing with such people as the police, general practitioners and care assistants. They will be able to help us with our postcard campaign, and if we are lucky with our video project.
It is a start. Imagine if in twenty-five years time the stigma of mental illness was a thing for the history books. I can hardly dare to think of this, let alone believe in it. Is it really possible to disentangle mental illness from all of our cultural and social stereotypes? Is it possible that people will be able to celebrate diversity in lifestyle, appearance and emotion? That we who have experienced such unique and powerful feelings, will be accepted as ordinary citizens? I cannot believe in this, but it is something that I aim for.
It is possible. We know when we meet each other that we are ordinary people with some extraordinary experiences. We know that we laugh and cry like everyone else and large numbers of the general public know this too. But how do we get away from the fact that mental illness is almost always, in its acute form, an unpleasant experience both for ourselves and those around us.
At the moment we are, I would think, moving slowly out of a culture of fear and ostracism and the attitude that "they" should be kept away from other normal people, into a new culture that seems to mingle attitudes of pity and concern and tragedy that we bravely struggle through.
I want the next 25 years to bypass this stage in the way that people see us. I want the mad psycho's wielding their axes to disappear from our papers but I don't want it to be replaced by so and so's heroic fight against manic depression because that too marks us out as different. Someone somewhere must have the answer that will let the public know that although many of us have had strange experiences, we are still integral parts of our communities with the same value as other members.
Someone will also be able to help people like me to stop seeing myself as different to other people because on occasion I do. Like many users I often have the feeling that only someone else who has been in hospital or been psychotic can understand what I have been through, and I feel such relief when I walk through the doors of a drop in center. I feel here I can drop the mask, here I am totally safe.
All well and good as we need our own places, maybe we need our own culture but sometimes I feel myself doing the same as some members of the public would wish to do to me and that is to say, you lead your lives and I will lead mine and hopefully we will never have to have contact. I would hate, as the years go by, to see us building up our own barriers to see us rejecting society just at the time that society may find that it can begin to try to accept and understand us.
We have many years to go before we need to worry too much about that. I have talked about our illnesses, our medication and stigma as all being elements that conspire to rob us of a reason to think of a future. The last one that I can think of at the moment is employment or the lack of it. In HUG the topic that has aroused the most emotion has been employment. I remember talking about it and I remember the anger that made it almost impossible to discuss.
I was happily talking about flexible working hours and career breaks as routes into making employment a possibility for us, and members of HUG were saying "what an earth is the point of talking of all these things when as soon as you put down that you have a mental illness you know that you will not have any chance of getting a job? No matter what the Disability Discrimination act says about it.
Sadly to say they may be right and I may be wrong. As most of us will know about 80% of people with a mental illness are unemployed.
When you sit back and find that you can cope with mental illness, when you come to the realization that you have skills and talents to give back to the community, when you wish to move forward in life and then begin to realize that despite this it is going to be very hard to get any paid employment without obscuring the truth, is it any wonder that people stop looking to the future.
When you have resigned yourself to a life on benefits then it is easy to get into the routine that lots of people in long-term unemployment get into. Of television, cigarettes and coffee, late nights and long mornings, and is it any wonder? Because whatever the benefit system is like, it is not a system that allows you ready access to all those activities that can enrich and enhance life without work because most of them cost money.
All these elements, all these situations that together can conspire to take away our visions for the future need to be challenged by us, as users and carers and professionals, by us as members of a society that side steps the homeless (of whom 75% have a mental health problem) that look at the long term unemployed as creating their own problems, that look at our illnesses as something to be feared.
There are too many of us condemned to the margins. My vision or desire is that in 25 years time when someone is admitted to hospital or given a diagnosis, that they don't say; "There goes my hope and there goes my future" instead they will know that there whether they get better or have to adapt to a new life, that they still see a future for themselves and that they don't give up but look forwards to life as do those around them.
Highland Users Group
Tel: (01463 718817) Email: firstname.lastname@example.org