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Good Practice in User Involvement -
Scottish Community Care Forum Conference, April 2001

 

Hello,

As has been said I am Graham Morgan. I work for Highland Community Care Forum as the Advocacy Development Worker.

This really means that I work with HUG, the Highland Users Group, a group of people who have experienced mental illness and are speaking out to improve life for themselves and other people in a similar situation. I also work with a network of People first groups across the highlands, which does the same thing as HUG, but in this case they represent people with a learning disability. The last part of what I do, is work with the "Advocacy in Action" group, which has recently produced a Framework for the Development of Advocacy in the Highlands.

I am a user myself. I was originally diagnosed as having a personality disorder and for the last 9 years have been diagnosed as having schizophrenia. It is from this perspective that I am going to talk. I don't claim to have answers to good practise or even to necessarily know what good practise is, but I do know what I have been through in my personal life and in my work with HUG and I will talk about that.

A member of HUG who has a particularly good way of expressing himself once told me the following:

"HUG is the Flint inside me that lights the spark that burns in my heart."

When you go away that is what I would like you to remember. The phrase "good practise in user involvement" is such a flat nondescript one; it doesn't give meaning to the passion and energy that we put into groups like HUG. I would like to spend a little time here talking about my reasons for getting involved.

As I was preparing for this talk I began to think of the friends that I have. Most of them have experienced mental illness, some have attempted suicide, some of them have succeeded and killed themselves, some of them still regularly self harm, some of them still wish that they could die and it brings it home to me.

I remember many years ago when I also wanted to die; the days when you woke up to nothing; when you slept through the day with an empty body and a pale mind; when the glimmer at the end was the knowledge that you may express some measure of how you felt in the evening with blood and razor blades and how, that eventually was not enough, how eventually self harm turned into an overdose; a desperate attempt to escape from the agony of what was meant to be a beautiful world.

In those days I became involved in what we called the "user movement", just as members of HUG do nowadays, and in the coming together we didn't set out to get involved in the health service or the community care sector, we came together for lots of reasons.

For me the reasons for getting involved were a mixture of the following:

I wanted retribution and restitution and I still do. Seventeen years ago I woke out of a comfortable existence when I came into contact with the psychiatric services. Today we talk about the old Victorian Hospitals and the ways in which people were cared for as if they were the past, as if dusting off the memories was a slightly shameful thing to do

- I will never forget a nineteen year old screaming for what seemed like hours after he was jumped on and injected by a huge army of nurses,
- or the man ,who later died, who had to hold his trousers up with his hands ,
- the crowded dormitory which was so hard to sleep in,
- the silly codes in the nursing records,
- the long stay patients scrabbling desperately in the ashtrays for cigarette ends before being sent back upstairs,
- the smashed windows ,the holes in the walls
- The patient who hadn't seen the town for over twenty years and was wondering what it looked like.
- I won't forget the bare boards of a night shelter where in a scene out of some corny film a young man rocked on the floor amid rubbish and bin liners- holding a teddy bear to his chest for comfort.

I want these crimes against a part of our society to be recognised and for someone somewhere to make amends. User involvement nowadays is not about commenting on a community care plan it is about opening our eyes wide and asking ourselves "What is it about the way that we are treated nowadays that will go down to be repeated by future generations as- inhuman, as wrong -as basic issues that those who follow us will puzzle over-looking at our lack of action and our lack of interest"?

In HUG our discussions, though focused, range far and wide, and I wonder what is it that we have seen that is so wrong? Do we even as users know it in our thoughts?

Is it the fact that so many of our members have spent years on benefits with no realistic chance of coming off of them? On benefits, where you feel surrounded by a maze of forms and regulations that are so complicated, that it is recommended that you get outside help to fill in some of the forms; on benefits where in your despair and because of all that it signifies, you leave and put off for day after day and week after week making your claim.

Perhaps it is that, maybe the issues are housing, some of us live in appalling accommodation, and some of us have nowhere to live at all. Perhaps it is the fact that some of us can be treated against our will when we have committed no wrong and no crime except to refuse to recognise our illness.

One thing I am hoping future generations will look back on with dismay is the fact that so many people with a mental illness are in prison and that in rural places such as the Highlands the police cells can be the only option before being admitted to hospital.

This is where groups like HUG come into their own. Last year we alerted the Scottish Health Advisory Service to this situation, when they came to visit the highlands and they in turn alerted the Trust who along with the Health Board, Social Work Department and a member of HUG, successfully applied for funding to develop Places of Safety as an alternative to the police cells. As the circle turns we in HUG are now finalising our own ideas about what this should really mean in the areas that we live.

But it is slow, in HUG it is easy to think we have shown the problem, made the argument, done the talking so surely now something should happen. That is how things change isn't it? By rational reasoned discussion, by getting everyone together by listening to each other, and yet it isn't. A year after raising the problem of the use of police cells for people with a mental illness they are still being used.

During one of our discussions on this very subject a few weeks ago, we were made aware that someone had just passed his twentieth hour in the police station awaiting transfer to the hospital.

That is where we can all get so frustrated. Identifying the need, for instance for crisis services. The pure basic cry of this is what it is like in crisis; when in the depths of the night your soul yearns for some sort of solace, some contact to take away the pain of your thoughts and to ease the fear of what seems to be the approaching collapse of the world you try so hard to live in.

We have made the argument for solutions to this; for helplines; for access to services and people you know and trust out of hours and we have won this argument. It is clearly in the Highland Mental Health Framework document and in each area of the Highlands they have been holding workshops to look at solutions. At last we are getting there and should be celebrating.

But we do not always celebrate because user involvement is not always about meetings and discussions. It is about identifying the raw uncovered pain of your world and the world of your friends and when you go into a meeting to talk about the need for help that will come immediately at any time of the day, and you meet a crowd of well dressed confident people, who although they believe in the need for services, who, although they are committed and will go out of their way for better services, when you meet them and you realise that this day is also a good break from work and a chance to catch up on gossip and friends, then worlds and cultures collide.

Because it is not acceptable when people give their time to look for changes that may save their own lives or their friends lives, for us to go into workshops where the spectre of limited resources, where the cynicism of we have said this all before deadens the impact of what is so important to all of us.

In those circumstances we can go away downhearted. We can say why do we ever speak out? Why did we bother getting involved in the first place?

The workers who we are angry with in turn may feel incomprehension, they may say but why are you angry? Why do you blame me? I am surely on your side and they are but we are miles apart too.

As I said user involvement is many things. The involvement is just the vehicle for what we are doing. For me and many others in HUG we get together to change the world, literally to change the world. I am sure that many of you will understand this.

When you have been through a pain that no one else sees, an emptiness you cannot express and fears and delusions and hallucinations that mean that the only form of expression, the only way to express what you feel is to literally torture yourself; in my case by stubbing out cigarette ends on my hands.

When you have been through this you need to make sense, you need to understand, and you need to stop feeling guilty. You need to look at a world where even in relative luxury so many of us can feel so sad.

In HUG we tentatively try to do this, by talking, by discussing and by testing out our ideas we try to make sense of our lives. We try to find meaning to what we have done, we try to make other people understand our lives and in this understanding come to see how ordinary and normal we really are. We try to make sure that no one else goes through what we have gone through.

HUG is about coming to terms with who we are and how we see each other. Learning to believe against the odds of an uninterested society, that we really do have things to give that we really are valuable, that we are not the second class citizens that so many members of HUG have been made to feel they are.

I have obliquely been talking about the things that make a group like HUG work and some of the barriers that we face and I would like to summarise some of the things that we do, before finishing with a couple of examples of the things that have really struck me.

Groups like HUG look to the past, sometimes the very recent past, where we give witness and bear testimony to what has happened to us. Both to give expression to illnesses and experiences that need recorded so that we can grow beyond them and also so that other people can understand and challenge their own prejudices. But to also to make sure that the abuses and betrayals that still occur do not go unrecorded.

I want it known that there are still doctors who struggle to believe in mental illness, that there are still GP's who have commented on the actions of young people falling slowly into psychosis as the behaviour of spoilt children, and that all that is needed is a firm hand and discipline, that there are professionals who have said of the suicidal despair of people, that this is just an example of evil manipulation of services and people.

It is easy to gather the examples; it is vital that they go recorded. In HUG we can also look to the future. We can look at the fresh present, we can identify the problem, whether it is a practical one such as people living in sub standard accommodation or having stones thrown at the place in which they live. And seeing the problem we can look to the solution and do our best with the drip feed of argument and dialogue to ensure that what has hurt us does not hurt those that come after us.

That description comes from the passion of people like me for whom this can be all consuming. HUG is more than that. It is also about keeping in touch with the grass routes by meeting with people where they are so that they can contribute in their own way without the burden of having to get over-involved.

HUG is about celebration. Our lives are hard but it is good to find ways to contribute and to find ways of giving back because not everything is about abuse and sadness. Many of us, myself included have had brilliant treatment from other people and we need to record this too.

HUG is also about doing things directly. I have not talked about a huge part of our work which is that concerned with changing the attitudes of the public and professionals by using our own testimony in the media and in mental health awareness training.

This is because Emma my colleague will be doing a workshop on some of this later but in brief:

We have provided mental health awareness training to a large range of people including: The police, GPs, Mental Health Officers, Care Managers, Care Assistants, Nurses, The Joint Committee on Community Care, Housing Workers, Woman's Aid, Schools and so on.

We have been involved in media work with television, the national and local press, and on national and local radio. We have given talks such as this all over the place including a talk to members of the Scottish Parliament and produced a range of postcards to promote discussion of mental health, 60, 000 of which have been distributed.

That sort of work is great, it is real, it is tangible and it has a clear and sometimes immediate effect. That is a form of user involvement which, although it takes a lot to get involved in, feels to me to be really worthwhile. In short presentations and dialogues you can make lives real, you can change minds and you can bring understanding to people who through ignorance have damaged us.

To finish, just a few things that have struck me recently which are really to do with communication and needless barriers.

Not long ago I gave a talk to a group of psychiatrists on the things that had worked for me and the things that did not. I had heard a lot from members of HUG about these people. Some of it good some of it bad and I had also had a mixture of experiences myself.

But in my mind they were wrapped round with my own labels and categorisation they were the minds we had to change, they were the suits and they were possibly the barriers to our future happiness.

And yet they weren't, the barriers weren't there. I had one of the best evenings of recent years where we communicated, where we listened to each other, where I began to see them away from their image and where perhaps they began to se me away from my image.

It seems to me that it is the preconceptions, the worries and the labels that get in the way and yet when we see each other just as people, then we can speak to each other constructively.

Another memory was doing training with GPs on self-harm, a bruising emotional encounter tempered with respect and care. The bit that struck me is that we gave our views our feelings and then we asked the GP's and registrars to do the same and we saw the wounds and incomprehension that they faced when dealing with us and with this my eyes opened a little further.

When we wrote our report on Quality we said that the key to a quality services is the staff, and the best experiences we have had is with staff who we know are there for us and those who go that little bit extra and show us that they really believe in us.

Some time ago I was doing training with a voluntary organisation that works in mental health and met one of the people involved in planning now as a volunteer and again the scales fell away because yet again I hadn't expected a commitment beyond doing a job professionally.

Although we need our separate voices we also need to remember that many of us, perhaps most of us, are in this together.

Lastly When I first mentioned to one of the members of HUG that I was doing this talk she said to me that one of the clearest examples of bad practice is when people sit back and think they've got it sorted. I think I would agree with her.

I don't in my heart know what good practice is but I do know that constant inquiry and reflection on your own practice puts you on the road to doing as well as you can with the people that you work with.

Thank you

 

 


Highland Users Group
Tel: (01463 723560) — Email: hug@hccf.org.uk

 

 

 

 

 

HUG Talks - Good Practice