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Mind over Structure
Designed to Involve Conference (October 2001)

 


Hello

As has been said my name is Graham Morgan. I am the Advocacy Development Worker for Highland Community Care Forum, which works to give voice to users and carers through a series of interlocking networks.

My particular role means that I help users of community care services speak out about the services that they need and want. I do this in three main ways:

  •  I work with the Highland Users Group (HUG) which represents people with a mental  illness. It is a group that is spread across the Highlands in a network of 13 branches with  about 230 members.

  •  I work with People first which represents people with a learning disability. This group has  about 80 members and six branches within the Highlands.

  •  I have also been very involved in the development of what we are calling a Framework for  Advocacy in the Highlands which was created by a group called Advocacy in Action  which I chair.

In HUG one of our main activities is mental health awareness training where we talk about our experiences in the hope that dialogue and openness and honesty will change minds and make subjects that are shrouded in pain, understandable. We make an effort at every session to make it clear that we talk from our own perspectives and that although we are training others this does not mean that we are a store of ready answers.

I hope that you will accept that from me today. I am a user and my job is all about helping other users to speak out but I do not have key answers or a clear knowledge of the best ways of doing things I am just speaking from my perspective and my experience.

Over the weekend I have been thinking of the subject of user involvement and I have found myself drawn further back to when I first got involved in trying to influence services and I think it is there that I will start because in the murky past of 17 years ago user involvement was a very new idea.

User involvement is the wrong word and almost the wrong idea and in its use we may see the clash of cultures and ideas and expectations that make it such a hard thing to engage in.

My job is, in its day to day running, all about user involvement, however that is only as a small step on a means to an end, a way of improving our lives and the lives of others like us that we feel we could lead if we could only be given a chance.

As I said I am a user of mental health services; I was originally diagnosed as having a personality disorder and then later on as being schizophrenic with the occasional touch of depression and anxiety thrown in to liven things up.

I was about twenty or twenty-one when I first became ill. In those days life was an isolated monotonous blur, a place where the days were grey and had no meaning, a place where my room became a prison and the chair I sat in evening after evening a cage from which I could not move.

In those days where I lost belief in myself and my world I found that the only way in which I could express myself was through cutting myself with razor blades. The evening would come and I would drink too much and gradually the newspaper on the floor below me would become splattered with droplets of my blood. I would go to bed and I would pray that I could have the courage to kill myself and I would wake up and the day would stretch and stretch ahead. Almost inevitably I took an overdose and almost inevitably various doctors tried unsuccessfully to help me.

In those months I thought nothing would ever get better, nothing would ever change, but it did. Life was still awful, my razor blades still my friends but I began to meet people and in the dawning's of confidence thought, as many people do, that I wanted to give something back.

Getting involved in planning or in services never even thought of entering my mind, but using what I had been through and helping people in similar situations did.

I had been through and was still going through something horrible something that was hard to talk about, I had lost confidence, I had lost belief in myself and was in a world a long long way from the university course I was meant to be on. I needed to feel needed, to feel amongst my own, those who would understand and not need the constant display of the mask of coping.

I became a volunteer with an organisation called "Half Way House". It was great, a revelation to have something to do, to find something to believe in to be around people that I respected and liked.

As we all mixed together, both users, volunteers and workers, we began to give voice to those things that had happened to us. We began to build up a picture of what we believed in. I brought up my experience of the hospital that I had been in, with its decay, its smashed furniture and windows, with its lost people and its alienated staff. I brought in the doctor who banged the table promising me I would get better and then later said I would just have to get used to a life of continual unhappiness.

The psychiatrist who sat in inexplicable silence through the interminable meetings he had with me where my hope rose and soared for hopes of solutions and then dragged low in the aftermath when I trailed home wondering why he didn't speak to me.

I brought the old man in the hospital who had no belt to hold his trousers up and who died without dignity, I brought the friend who was discharged to the floorboards and rubbish of a nightshelter from which he was later thrown out. I brought my friends who were going to beat me up if I could not explain why I felt as I did.

We all bought our alienation from those who were meant to help us and as we as volunteers and users began to meet together, we began to construct our vision of what we wanted. We wanted to set up our own service. Somewhere for young people, somewhere no professional would be allowed, somewhere clean and warm and homely with lots to do but no one to tell you what to do and somewhere with food and beds for those in crisis who couldn't face another night on their own.

This was our way of getting involved. It was us sitting together, a group of people growing an idea and a belief system. We had help from a worker and as the meetings stretched on we became organised to the point where we met with professionals.

We had a presentation to give. Kay had designed the brochures and Karen had done lots of the organising. We had all seen and written our vision of what we wanted and we went into a room, a big hall where we gave our ideas to a group of professionals.

That was my first taste of involvement. I had no idea of who the people we were talking to were. They were much older, they were smartly dressed and they had no expression to their faces. We didn't know who they were; their job titles were meaningless to us. All we knew was that they were important, influential and powerful people.

This was not a place where we could have any meetings of minds. We had no interest in speaking to them other than to show what we were trying to do and to get help to go ahead. However we were listened to, our views were taken into account; we never paused to wonder why a group of professionals whose work we totally rejected should fund us.

We relied on Pete, our worker, to do the organising and as time went on, in the end we learnt to compromise. We had to ditch the crisis bit of our centre. No one would fund the adaptations to give disabled access but we did end up with a beautiful huge user run Drop-in Centre.

What that little example of life many years ago is meant to show is that user involvement is not something that you do in isolation. You have to learn of the worlds and wishes of the users who are getting involved. You have to learn that our agendas are different, that our hopes of the process are different and that our experiences are different for it to work and to last.

We need to learn to respect and to enter each other's worlds. In the world of my twenties my world was all about making life better but it was influenced by bitterness and anger and rejection. This was not a bad thing. It is how many people feel at different times. I found that my anger and frustration was channelled into something, which was hugely productive for myself and those around me.

In HUG, which represents people with a mental illness, we still have different views. Many of us are still motivated by great pain and great anger. When you are deeply distressed, to the point that you are cutting chunks out of yourself, how do you react to the doctor who tells you that you are wickedly manipulative and attention seeking? You don't stop do you? You don't relax to forgiveness; bitterness can be a hard thing to release.

In HUG there are people with a great need to testify and to bear witness. The things we go through need said and need recorded, even if only to make sure that the darkness of which we speak is not left or ignored as if it never happened.

There are also people who wish to give. When you have lived through and been brought back from sadness you often want to give back to those who helped and to help those who are still there. There are those of us who just want to communicate, not to complain but to point out things that can be improved. There are those among us who just like the company of each other and the chance through discussion to find out what would make sense of our lives.

In HUG we have grand schemes. We believe that we as users have a unique experience that needs to be used to make services better. We believe that people with a mental illness are routinely discriminated against, that the public, the media and our whole culture has a distorted image of what mental illness is. That employment is rare and that life is often one of isolation poverty and hopelessness.

We believe that this is wrong. We believe that to change this we need to speak out, to join together, to learn from each other, to persuade to argue to cajole, reason, and to stamp our feet. And along the way sometimes accompanying us very closely, we need to get involved with those people who make decisions who provide services and who make policy.

Our philosophy is that the experience of all users are valid and important and that the more we are listened to the less we will be marginalised and the more in tune services will be with us.

For people like me there is in the back of my mind the perhaps rather arrogant idea that if only we talked enough, discussed enough and thought enough, that if only our views were acted on, then the pain of illness would hugely diminish.

HUG is represented at a national level on groups such as the recently disbanded Millan Committee that reviewed the Mental Health Act, on the Scottish Needs Assessment program, that is looking at liaison psychiatry and psychology, and with the Scottish Health Advisory service, with work on developing a suicide prevention framework and so on.

HUG is represented at a Highland level sometimes, with the Chief Officers Group when it is looking at the mental health framework, on a series of service development groups set up by the Primary Care Trust, on the care program approach group and on the Homelessness and Rough Sleepers initiative and so on.

It is also represented locally at informal and formal meetings and recently with a series of groups that are being set up to look at the mental health framework. It is also involved with some of the local health care co-operatives.

We give talks such as this. We visit other groups who want to find out how we do what we do. We provide mental health awareness training. We have a series of postcards and posters and we are half way through developing a website. We have frequently talked about mental illness with the television, press and radio and so on.

I believe that the collective advocacy as shown by groups like HUG is an ideal and sustainable way of creating opportunities for genuine user involvement and I will spend the rest of my talk describing how we set up HUG and what it does.

I moved to the Highlands about five years ago as the Advocacy Worker and quickly met people with a mental illness who showed an interest in a group like HUG, somewhere to meet, pass on information and campaign for better services. The initial interest gave me the encouragement to visit users across the Highlands in the Drop-in centres and training units that many of them met in.

At these meetings we talked about mental health in much the same way that I have just been talking, and as people began to gain confidence in the idea of a group, we collected names and addresses. After a few months of trips and visits we had 50 people interested in a group and as they were beginning to say that we had been doing enough talking and perhaps we should do something, we called our first meeting to which 25 people came.

We prepared for the meeting by getting a series of different models and options for the running of the group. At our first meeting in an old church hall we agreed:

  • Its structure; it would be a group dispersed across the Highlands facilitated and supported by my organisation HCCF.
  • Its aims; for instance identifying gaps in services, exchanging information, promoting equality.
  •  Its membership; anyone with experience of a mental illness, except dementia.
  •  Its name.
  •  Its groundrules for meetings; for instance, despite the intensity of peoples experiences  we will not permit any implication that one persons ideas are more important than another  persons.
  • Where it would meet and so on.

Since then the group has grown. It has members from most parts of the Highlands. It has grown from a group with 8 branches to one with 13. Each group meets every two months. There is a committee that we call our Round Table, which is composed of 2 representatives from each HUG branch. This acts on Highland wide issues, decides on policy; for instance on the reports that we produce or internal issues that we need to agree on, such as developing an ethical policy, with which we struggle, or looking at the results of the most recent review or evaluation.

Most of our work centres around the reports that we produce. Within the HUG meetings we hold regular themed discussions, which each group discusses in turn, with the results being turned into a report. This report is approved by the HUG Round Table before being widely distributed across and outside the highlands. The reports will then be discussed at our round table meetings to which we invite professionals' from the relevant agencies such as the Health Board, Social Work Department, Primary Care Trust etc.

The reports endeavour to give a consensus view of the issue that we are discussing but where there is disagreement on a subject we will put both views into the one report.

Whilst we believe that an issue remains an issue whether it is raised by one person or a lot of people, we are also pleased that we involve a lot of people in the meetings. A round of HUG meetings will involve between 50 and 100 members of HUG.

From our point of view it is important that our reports result in change. Sometimes the change takes a time or we don't see it, but we do know that we have influenced decisions for instance;

Our report on the siting of the psychiatric hospital influenced the decision to keep it in a green field site and prompted our involvement in the reprovisioning of the old Craig Dunain in a series of meetings over a couple of years.

Our report on Medication helped with the creation of a system of providing better information about psychiatric drugs especially when people are in hospital.

Our report on Suicide probably helped influence the decision to create a liaison psychiatric nurse for Raigmore Hospital.

Our report on Crisis Services and meetings with the local health care co op helped establish an out of hours CPN service and has helped with the recognition across the Highlands that local accessible 7 days a week services are needed.

Our report on Ward Rounds influenced procedures for ward rounds in other areas of Scotland.

We have also produced a series of newsletters reporting on current events and issues and have had representatives from the statutory sector visit all the local HUG groups to talk about the Framework for Mental Health and the progress on what became our new hospital.

So to summarise HUG:

  •  We identify the issues amongst ourselves and communicate these with professionals  verbally and through reports.
  •  We discuss issues at meetings that are run by HUG to which professionals are invited  too.
  •  With key issues, we invite professionals to our own local meetings.
  •  We either through HUG or myself, represent the views of members nationally, at a  Highland and level and locally at professionals own meetings.

I am going to start to wind up here. I began this talk with a description of meeting with officials who seemed remote and alien. Over the years as we have become more and more credible the faces have become familiar and human and it is this crossing of barriers that interests me now.

With dialogue many of us are finding that we have common aims that we are not inevitably enemies that, in fact, both officials and users may wish for the same things. The stumbling block is not that we cannot agree it is how to make things happen at a pace that we can all accept.

I wonder do we lose credibility because we begin to trust those people that we once rejected and felt alien to. It feels to me that we all need our own room to work out what we think, but that once we have done this we need dialogue.

This was made clear to me at the beginning of last year when as a result of discussions with the Local Health Care Co-op; we sat down with trainee GPs and registrars to discuss the subject of Self-harm and Suicide. Making real what we had gone through, why we did such things, how we are treated and then listening to the doctor's version of the same subject was hugely moving to me. It was a session we might not repeat because of the pain of the memories that for some people are all too recent. But this exercise, where at last we talk openly and honestly in as safe an environment as we can create, where dialogue becomes creative and constructive seems to be one way forward in user involvement. The key element seems to me to be one of attitude and culture and a willingness to learn from whoever from whatever perspective can contribute.

Thank you.

 

 

 


Highland Users Group
Tel: (01463 718817) — Email: hug@hccf.org.uk

 

 

 

 

 

HUG Talks - Mind over Structure