Democratic Deficit: A Patient's Perspective -
As has been said, my name is Graham Morgan and I have been asked to speak on the Democratic Deficit from a user's perspective.
I feel a bit of a fraud today. Many of you know a huge amount about democracy, which I do not, and all of you know what it is like to be a user of the National Health Service, so I wonder what I can bring to today's Conference that you don't know already.
I think that my contribution will be about how people like me have been dealt with by democratic societies, and about how we, who in the past, have been ignored, have come together to gain a voice in the NHS, which is now being listened to through our own home grown version of democratic groups. Lastly I will relate this to the experience of a friend of mine.
I am the Advocacy Development Worker for Highland Community Care Forum, and spend most of my time helping people who use community care services find ways of gaining a recognised collective voice that will help them in their own lives and in the wider context of improving services.
One of the groups that I work with is the Highland Users Group which represents people with a mental illness. As I have a diagnosis of schizophrenia I feel that I may have some legitimacy when I talk on this subject from the point of view of someone with a mental illness.
The story I tell is not one that applies to all users of the NHS but it is common to many people who have traditionally been abused, ignored or excluded by the society of which they are a part. I speak as a person with 17 years experience of mental illness, but I think that parallel themes to what I say can be found in many communities - perhaps homeless people, people with learning disabilities, older people, deaf people, people with other disabilities, people living in poverty, and so on.
I have rarely paused to think about the democracy of which I am a part. I suppose when I do so, I think of freedom (although I am not sure what that means), I think of protection and I think of having a say and of voting for what I hope should happen in my country. I think that I have always assumed that the bad things that go on in our world are less likely to happen in democracies.
I have often heard a phrase that goes along the lines that the mark of a civilised country can be seen in how it deals with those people who are vulnerable within it. And so, with that in mind let us look briefly at how the democracies of the west have in recent memory dealt with people with a mental illness:
"The unnatural and increasingly rapid growth of the feeble minded and insane classes, coupled as it is with steady restriction among the all the thrifty, energetic and superior stocks, constitutes a national and race danger which it is impossible to exaggerate. I feel that the source from which the stream of madness is fed should be cut off and sealed before another year has passed."
That quote was not from some barbaric regime, but from Winston Churchill.
The eugenics movement to which this referred partly originated in Britain and was implemented in many of the democracies of Europe as well as in America. In America 60,000 people were sterilised in order to rid the world of people like me. The same numbers were sterilised in Sweden, with the programme in that country only finishing in the 1970's.
Lobotomies and leuctomies were carried out in the 40's and 50's to treat people with severe depression and psychotic illnesses. In crude sweeps of the scalpel thousands of people's hopes for a future passed away forever in a haze of perpetual dullness and apathy, the last of those people are still living today.
In the 60's our hospital in the Highlands, like most across the country, was bursting at the seams with up to 1500 people removed from family and community into a bleak institution that took over and blighted the rest of their lives.
In the 60's, 70's and 80's the wonder drugs such as Vallium were prescribed to millions of people, leaving many thousands with unmanageable addictions that shredded their lives.
In the 80's and 90's in places such as America, the homeless and destitute former inhabitants of psychiatric hospitals living on the city streets became a running cliché in films and literature, and in Britain the media whipped up a frenzy about supposedly dangerous people being released into the community.
A couple of months ago politicians and the media celebrated the fact that they had prevented the building of a hospital in Glasgow to care for people suffering from mental illness (one of the most horrible illnesses that people can live through). As one community celebrated, others joined in to say that they too would not accept such people or such a facility in their midst.
In the same month we booked another bed and breakfast place for one of our members in the name of Highland Community Care Forum, and again we had a landlady refusing accommodation because of the fear that community care provokes.
And on a lighter note, two weeks ago on holiday my son picked up a lolly called 'strawberry psycho', my mother- in-law drank from a bottle of 'looney tunes' water and I picked up a jar of 'insanity sauce'. Maybe political correctness has gone too far, but those ways of referring to those of us who are ill affect not only ourselves and our families, but also the culture we live in.
I don't know whether this account means that we in the west are not civilised, or that democracy like any other system neglects those who do not have power or a strong voice. I hope you would agree that it shows that people with a mental illness have been desperately neglected over the last century and into the present day, and that the complacency and passivity that "looking after the vulnerable" implies, is not a way of ensuring our proper place in society.
I have heard people when they are inspecting services, or looking at their own practice, say that a good rule of when looking at what is being done to us is to ask the question - "would you let this be done to yourself or your family?" That is a good way of looking at things, but a survey a couple of years back showed that 83% of doctors would not prescribe the old anti-psychotic drugs, with their cloying, deadening feeling and long term side effects, to their own family, and yet only 27% of the new atypical anti-psychotic drugs were actually being prescribed.
It is easy to think that in the general interest, despite the pain and suffering, a particular treatment can be tried. When we have power given us it is easy, despite our best attempts at humanity and fairness, to forget that those we look after are our equals.
It is very easy to do this when those people we are treating have little voice, when the legitimacy of their feelings is suspect, when the intensity of their emotion can be put down to illness and when the coherence of their thoughts is questionable. It is easy to sweep the views of the mentally ill away and characterise them as ill informed or idealistic and vengeful.
But to me this is the point where we can make our society and democracy one that genuinely treats the vulnerable with respect and fairness. That is by giving the vulnerable throughout the NHS the opportunity to have control and a voice and a say in what is done on their behalf, both in their individual treatment and in those changes that affect them as a community.
In the Highland area we are already doing this and have been for some time, as are other areas across the country. To my mind this form of collective and individual advocacy is very exciting and needs celebrated. It is democracy at the very grass routes. It is not a simple tick of a ballet paper or a polite conversation or a cultured meeting, but is a raw burning attempt grasped by us to change the reality of the sometimes horrific lives we and those around us experience.
For those of us who have experienced mental illness; the days when life drags slowly achingly in the empty spaces of our minds, the days when life is a panic, a terrible jitter of frightened thoughts when you cannot ask for a bus fare or buy your shopping without fear, the days and weeks when the reality of your existence is strange to all those around you and life a haze of confusion.
When we have experienced such things, when we have found that we can no longer work, or that our abilities to be parents are in question, when we find that we are likely to spend the rest of our lives on benefits or that our illness and drugs may last for year after year, we can lose the hope of a bright future that we were brought up to believe in. We can feel apart and alien, we can feel worthless and useless, and we can feel that there is nothing that we can do any longer to contribute to our society and we can lose all respect and trust in those that are meant to help us or represent us. We can give up on our lives and resign ourselves to a life in the twilight of our dreams.
HUG, like many other groups, challenges this by speaking on behalf of people with a mental illness. Although already five years old it is still a very delicate group because it deals in hope where hope has sometimes lost its power to motivate.
It was set up to give a voice to people with a mental illness, because our voice is sometimes the only witness that we can give to our lives. It is the only way we can change minds, sway hearts, learn from each other and speak with those who have power over us or who act as our representatives.
Perhaps a way of explaining what we do and how we do what we do is to talk about the HUG Communications Project. This is a project of HUG that is always on the verge of losing its funding. Its aim is to challenge stigma and discrimination by helping people speak up directly about their lives and the lives of others like them, in the media, in mental health awareness training, in schools, and in promotions.
A couple of months back some of us were looking at how we run our awareness programs safely but powerfully and, as we sat around the table, we got talking. Four or five of us just talking and, as we talked about detention and life with a mental illness, we realised the effect of illness on us is a shift in perspective. It changes lives, status, identity and values and as you go through it you have to look at life anew. In subtle and unsubtle ways our lives shift around us and as they shift we have to grow up all over again.
HUG is like this. It is about learning from each other, it is about a community slowly gaining a voice and a vision of how it wants to be treated, how it wants to be viewed and how it will participate in the services that help its members.
It is to me far more than a means of intelligence about the NHS or Social Work or housing, or a way of involving users. It is a way of making sense of life. It is a way of gaining justice, of giving voice to what are sometimes unspeakable events. It is a way of giving testimony to what we have been through.
Different people use it in different ways. For some, it is a way of giving back now that they are getting better. For others it is a means of understanding and a place to meet people in a similar situation, and for others it is a way of trying to change the world. We don't know how, we don't know the answer, but it is a way of trying to make sure that other people do not go through the things that we have been through.
When we raise our voice we do not do so lightly. We do so in the hope that by giving expression to our experience people will learn from it and, even though we suffer in the speaking, we do so in the hope of change.
When we speak to doctors about self-harm and suicide we do this so that never again will people who in their acts of despair harm themselves, be called manipulative or attention seeking or evil, and so that no doctor will again say that the bed being taken up by someone who is suicidal could be used for someone with more important needs, and that never again will one of our members who in her despair bangs her arms and head against a window be told that if the glass breaks she will have to pay for it.
It is in this forum, where we tell our stories in relative safety, that we teach, we learn, we gently hold to account, and in this we join people without power with those with considerable power. There we hope to change minds and improve practice and give voice to those who have rarely been heard from before.
We are a group gaining its own identity and vision. We set our own agenda and we talk about the things that we know are important to our members. It is through gaining a strong and committed membership that we can develop a democratic and sustainable movement of people who have experienced mental illness.
Along the way we
need the allies in the Health Boards, the Trusts and the Council. They
after all can determine the fate of present and future services that
are crucial to our well being. They with their meetings, their policies
and plans, and the fact that they fund us are vital.
I have talked about how we have been let down by our democratic society, how we need to avoid abuse and exclusion to develop our own voice and our own representation within the NHS. But to finish, let me make this real by talking about Pete one of the committee members of HUG.
Pete was a member of HUG. He had both mental health problems and a physical disability. I will always remember him coming into the HUG meetings with a smile on his face, a catch in his breath and a slow walk to his seat, where he would stay until the meeting became too oppressive, or his need for a cigarette overcame his interest in the meeting.
Pete had a very hard time. He had severe depression as well as other disabilities that remained with him throughout his life. However despite this he was not a victim. His friends talked about him at his funeral a month ago, after he took an overdose of painkillers, as a person who was always there for other people and always ready at any time of the day or night to help those he was close to.
Many people said that he was the only person that they could confide in, and that now he was gone they were left with a void in their lives. He's gone now, but I would like to dedicate this talk to him as an example of why we need to be heard in the NHS.
I had a long talk with Pete not long before he died. We were talking about being listened to. On an individual perspective he talked about how frustrating it was to go into the doctors surgery, only to be faced by blank disinterest and barely disguised efforts to deal with him as quickly as possible.
Pete knew full well that he was not likely to get better, that a doctors appointment would not solve very much, but he did wish for more respect and to be able to get to an appointment without being treated as a nuisance, and to have faith that when his friends alerted services to his problems or accompanied him to the surgery because he found difficulty talking about personal things with strangers, that their views would be acted on as a reflection of his problems, and they were not. On some subjects it is hard to open up - Pete couldn't do this and the doctors did not encourage him to.
Pete also talked about the larger problem of exclusion. He was not a person who would ever willingly participate in the crowded seminars and consultation exercises that people like you and I go along to routinely. He had contempt and suspicion of the conventional, the relaxed and the complacent. He hated the fact that if people didn't fit in, that if they were odd, if they couldn't obey the demands of society, if they couldn't work. He hated it that they are ignored and pitied and feared, put apart and left to a life on benefits, which even these they could not rely on.
Pete talked about how important it was that such people had rights and a voice, not that they were turned into ordinary normal conventional people, but that society gained the maturity to deal with difference. That it reassessed what it thought was failure and that it included those people on the margins on their own terms and in tune with their own beliefs and gave them hope and opportunity.
I agree whole heartily with Pete's ideas and (to be corny) for Pete's sake, for his memory let us remember that rectifying the democratic deficit means knowing that your views will be taken seriously, and respected, whoever you are and for whatever reason you need the help of the NHS.
Creating a democratic NHS means creating accountability at all levels, not just at a Health Board level. Equally it means helping those communities of people who have been neglected to reach out, to gain a vision of themselves and their friends, to regain control of their lives and to participate in the NHS on their terms according to their own beliefs and culture.
This takes a long time. It needs resources and patience. It needs a willingness to listen to pain and emotion at its most naked. It needs people whose jobs are organisational and administrative and finish at five, to realise that they need to hear regularly from us, to learn of our lives and to realise that together in our different ways we can change our world for the better.
Highland Users Group
Tel: (01463 723560) Email: firstname.lastname@example.org