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Developing the HUG Network -
Allies in Change, June 200
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Hello,

I am Graham Morgan and I'm the Advocacy Development Officer for Highland Community Care Forum and I also have a diagnosis of schizophrenia of which I will say a little more later on.

Here's a map of where the Highlands are. As you can see it covers the northern end of Scotland it really is a place of mountains and lochs and streams and islands. It is as all the tourist literature says, a place of peace and beauty, a place where one of the hazards of summer is of tourists stopping, their cars in the middle of the road to take photographs of the sheep and the scenery, and yet it is as you will all know, not just a postcard fantasy.

The Highlands is almost the same size as Belgium but whilst Belgium is a country of 10 million people and has a population of 220 000.

Distances and transport are huge problems. For instance Albert, who came with me to this conference, started his journey to this conference on Sunday and the first 160 miles of the 300-mile journey were within the Highland s themselves.

There are distinct cultures within the Highlands especially when contrasting the Gaelic culture of the West coast with the East coast and in terms of mental health, we have the highest suicide rate in the United Kingdom, community facilities are underdeveloped and there is only one psychiatric hospital which involves a round trip of over 200 miles for many people who need to be admitted.

In the community, services are probably going to be based around four Community Mental Health Teams, which already exist in some areas as well as around a network of drop in centres across the Highlands, but here are some very underdeveloped areas. In the area that I live which is Badenoch & Strathspey, we have one CPN, a two weekly visit by the psychiatrist and an afternoon a week available in a local resource centre. The same situation applies in Wester Ross and is even more extreme in North West Sutherland.

So with that introduction, and a task to say how we have developed services locally, I feel very much like some sort of impostor. What I can do is say how the Highland Users Group has developed, in order that in some rosy future we will have services locally and that they will be the services that we need because we have had a large say in the development of those services.

What I am going to do is to talk about the Advocacy Project that I work for and how HUG has developed as a result, and what it has achieved over the last four years. I am the Advocacy Development Worker for HCCF and my part of the organisation has core funding for the development of Advocacy of £50 000 from the Health Board and Social Work Department. Out of this funding there are three main elements to my work.

I work with the Highland Users Group, which has over two hundred members and thirteen branches that meet every two months. We also work with People First which represents people with a learning disability, which has about one hundred members and six branches that meet monthly, the last element of my work is the development of an Advocacy Strategy,

In addition to this funding, we have about a years funding for Emma, our Communications Worker whose job is to challenge stigma and discrimination though the education of the public and professionals about our lives with a mental health problem.

Writing that last sentence I thought to myself this is boring, this is not what people want to hear about local solutions, this is not the stuff that keeps me awake at night and makes the drives in the winter dark with the snow whipping past the windows worthwhile. Let me tell you what you already know, I imagine.

HUG or the Highland Users Group may be about advocacy but it is more than that. It is our way of speaking out to change our society to change the world to make the services we use the best that they can be, to encourage people to look on difference as something that creates a vibrant society, a creative, tolerant, breathing, growing society. A way of stating both, that we are proud of who we are and of challenging the ideas that many people have about the lives that we lead. That living on the edge is neither failure nor heroism, and that getting assistance with our circumstances is not something to be grateful for, but is a basic right for all of us.

HUG developed to give voice to people with a mental health problem. It is both a mechanism to allow us to give testimony to the pain and distress that we have experienced with our illness and sometimes the system or the society of which we are a part. It is a way of standing up and saying this has happened and is wrong, but it is also a way of giving back, a way of giving thanks to the help that has given hope. It is also a way of saying I will work to make sure that other people don't go through what I have gone through, and it is away of sharing experiences, feeling needed and having something to do.

Perhaps more than that HUG is about change. We need to bear witness to the distress that we have experienced, but more than that we need to look from our own expertise in our lives to those things that would make life for ourselves and others better.

It is from that perspective that we began to develop HUG four and a half years ago and what follows is one version of our story.

Shortly after I came into post, I was asked to gather people's experiences of Community Psychiatric Nurses and as I did so, I began to ask whether anyone would be interested in developing a group that would both speak out and pass information among its members. As interest grew, I began to go to meet users in whatever place that I could find them and as we met I began to talk of my experiences and to see whether people agreed for the need for a group that would speak out.

In those days as perhaps we still are today, we were firmly rooted in the injustice of our lives and in the realisation that if we didn't speak out it would be unlikely that anyone else would and that the longer that we stayed hoping for change to happen from elsewhere, the longer life would stay the same.

After about six months of talking, travelling and discussing we had about fifty people interested in joining our group and one day in June we called a meeting in Inverness for anyone who wanted to start the group. I find it hard to believe how much we achieved in that one day.

At the meeting we had available copies of aims and objectives and ground rules, membership criteria and models of operation and so on, that the 25 people who had turned up discussed and debated throughout the day so that as the afternoon drew to a close we had the framework of a functioning group.

Some of the crucial things that make our group accessible now are that we agreed that HUG would not be centrally located, except for its administration, but would operate in a network of groups across the Highlands and that while it may possibly compromise our independence, we would meet in the places that people spent their time so that access for most, would be a matter of walking from one room to another for a meeting.

Of equal importance was the establishment of groundrules at the very beginning to allow the strong feelings that some of us had to be expressed in safety. To my mind the most important rule that we have and live by is the statement that everyone's opinion is valid and worth expressing. We try to include all views and are comfortable with contrary opinions, in fact in our reports which are in effect our policy documents; we express on occasions, opposing opinions.

The other important idea was that we left the administration, the rules and regulations and the management to my organisation, Highland Community Care Forum, which left us free to concentrate on what we are experts on, which was the issues and experiences that we have gone through.

We are now four years on in a position where we have thirteen branches of HUG and these are in:
Thurso and Wick in Caithness
Golspie in Sutherland
Alness, Invergordon and Catalina House in Easter Ross
Inverness and Craig Dunain Hospital (now known as New Craigs)
Nairn
Fort William and Garbhein House in Lochaber
Portree in Skye and Lochalsh
And lastly near Gairloch in one of our member's houses in Wester Ross

Each round of HUG meetings will involve a minimum of about 60 people and a maximum of 100. Keeping the work sustainable is getting increasingly hard but the more I whiz around like a drop of water in a red hot pan, the more members of HUG get involved, especially of our Round Table which is our elected committee (every branch has two representatives allocated to it).

We are now at the point where HUG wishes to become constituted in its own right and where the local branches are taking action independently, some of which I will explain in a moment and in our workshop that follows.

To get to the point that we have reached now has been one of rushing ahead in order that we can prove our worth, but combined with our helter skelter rush into changing the world, has been a process of internal evaluation and reflection. Briefly in the first few months or even years of our existence we have had to learn from our mistakes and enthusiasm

For the first six months of our existence we met in each of our branches once every month and discussed issues raised previously by members of HUG and from this we wrote reports but by the time those six months were up we realised two things. Although we had achieved a lot, writing a report and sending out minutes every month was not sustainable and equally, although we had a set of aims we had no committee to make me accountable to.

Our solution was to elect a committee and turn our meetings into, on alternate months discussing Highland issues and in the intervening months, discussing local issues, but unfortunately after some time of doing this at one of our Highland wide gatherings we realised that despite discussing local issues, which ranged from the need for local supported accommodation, to discussing whether psychosis could be a liberating experience, we realised that we were doing nothing about the issues and were therefore wasting everyone's time.

We therefore turned our meetings into two monthly meetings where we discussed a common issue in all the groups. (This by the way turned out to be very useful because as we discussed ideas in-group our thoughts grew over time as the ideas and experience of one branch grew and were tested in another).

Last summer we went through another change when we realised that electing a committee of HUG is fine as long as no one resigns. The resignation of a member and the wish for new people to join, resulted in us putting in place regular elections which in effect usually mean we all say yes to whoever wants to join from their area. We now have 25 committee members and an average meeting will involve about 17 people.

The other change we made was that the activities that were happening locally were not being acted on because we had no forum in which to discuss them, so we changed the structure of our meetings again by dividing each meetings into thirds: one third for Highland issues, one third for local issues and the last third for changing attitudes about people with a mental illness.

The bedrock for the changes that we have made has been the reports that we write. I will go through examples of them but the key here is that by collating the views of HUG on a specific subject together, by looking at the problem and also the solution, and by using reasoned and reasonable argument, we end up with a document that stands with a credibility that is hard to discount.

All reports are checked with our Round Table Committee and then distributed through our mailing list to about 400 people. Once they have been produced we discuss them at a meeting of our Round Table to which we invite representatives of the Health Board, Primary Care Trust and Social Work department, among others.

By no means all the changes that we want have occurred, but there have been real and meaningful changes some of which I will describe now.

Our first report was on the siting and shape of our new psychiatric hospital. At present we still have our old hospital, although it will close in two weeks time, but four years ago the plan was to site the new unit in the grounds of a general hospital and although our hospital is an old frightening institution we do appreciate the sanctuary it gives; the trees and the duck pond and the peacocks; the ability to find privacy and sanctuary and a version of peace. We did not think that the site proposed by the psychiatrists, being very public and bounded on one side with a dual carriageway, the other side by a busy road and in the middle with helicopter pad, would give us any peace.

We made those arguments and the Health Board accepted them as the most reasonable so we now have a new hospital where we wanted which, although it consumes resources like a furnace, is beautiful and light and airy with single rooms and lovely views.

We were not consulted as much as we could have been but at key moments we have been involved when the original plans were drawn up and when the final plans came into being, and were taken to all our branches and more recently in visiting the unit and being involved in discussions about to the use jargon, "the patient mix of the wards".

What we didn't get from that report were the local psychiatric bed that we also wanted.

Our next report was on medication. I don't know whether you have the same experience in England, but at the time we wrote this report we felt that too few of us knew about medication, that there were a multitude of reasons people dislike medication and that some doctors felt that we were less likely to take medication if we knew all the side effects.

We felt the opposite, that we should all have a right to know about the drugs we take and that in fact given sufficient information we would make rational decisions about whether to take it or not which would probably in the main mean that we did take the medication.

This report, when we produced it, caused a little bit of discussion and a few presentations and then disappeared as though it had never been written until a year later. We heard that the pharmacy department at our hospital had got funding to provide accessible information to users about their drugs.

They have been working on this ever since first by producing plain English leaflets and then by offering these as well as consultation on the one ward of the hospital, then all the wards. At present they are trying to cascade this information into the community for instance by providing written information in drop in centres holding drugs clinics and training Community Mental Health workers as well as acting as a hospital based resource to any one with concerns about their medication.

A further report was on employment and was perhaps the hardest to write and talk about.

Employment; for some people it is a constant slap in the face the fact that peoples problems prevent them working, that there is such limited employment and the fact that people are routinely discriminated against made people very angry, and in many cases unwilling to talk.

When in one part of a meeting we are talking about the possibility of career breaks and flexible working hours and strategies to tackle stress at work. People are sitting in the meeting knowing that the chance of them ever having a job again is almost nil, and not only will they not have a job but they will be looked down on for this and then emotions will run high.

However our report on this is credited with helping a now disbanded organisation known as Networks obtain funding to look at the different ways in which people with disabilities could get employment and prompted some trips to find out and speak out about employment and mental health.

Our report on suicide and self-harm was initially withdrawn because of some inaccuracies but later re-released. It made many recommendations, one of the key ones being that there should be a liaison CPN at Accident and Emergency, both for their therapeutic input and the training they could do. Many people thought the same and there is now a permanent post to do this at Raigmore.

In addition a group of us have done two sessions educating trainee GP's and registrars in self-harm, from our viewpoint. These sessions have been the most positively received that we have had and have concentrated on dialogue and looking at how we all feel. We also know for certain that they have changed practice and equally that we have ended up drained and exhausted and vulnerable.

I'll just cover a couple more reports that we have produced. The next one is inevitably about Crisis Services and Out of Hours Services; amplifying the dread that occurs when you reach the Friday evening and know that nothing is available until the Monday, or the silent dark hours when you desperately want to talk but there is no-one that you know around, or those times when the outside becomes unbearable and the four walls of your room become both prison and refuge at the same time.

I think you have crisis services in England. We have very little in Scotland but at least after talking with our GP Co-op, we had an on call CPN service put into Inverness that could be accessed via the on call GP service. This worked very badly but has been adapted to a permanent CPN on duty between 7pm and midnight. For us this is a great start but it does not help if you live outside of Inverness.

The report that could be our biggest success or our largest failure and certainly has been our largest piece of work is our response to the Mental Health Framework. We started work on this in 1998. We involved 100 members of HUG in every area of the Highlands and looked at the broad sweep of our lives, what helps, what doesn't, what is needed, what is missing and what the priorities for development are.

We were very pleased to produce our report. We had already participated in giving talks at Stakeholder conferences, Reference and Steering groups Operational groups and in Chief Officer groups.

We worked and we worked to the exclusion of all the other things and then as things seemed to be beginning to take shape everything went into limbo for a year. There was disagreement between agencies and a director here and a director there moved to other jobs and the strategy that was to be our six year vision which used our statement of values as the principles by which they would do their work and used our report as an appendix.

This strategy went dead and not only did it go dead because it was the vision for future services, but because it was not ratified due to staff changes. It felt as though new ideas also went on hold. Hopefully it is all starting again, we have produced an update on issues in mental health in the Highlands and are in the middle of visits by the Health Board, Social Work department and Trust to our local HUG meetings.

It is when things like this happen that you can talk about access; when the users at grass roots level can learn about future plans and at the same time talk about the week before when they were desperate for help that never came or the time they were discharged without follow up or being kept in the police station because we have no other place of safety and transport to hospital had not been arranged; when these things happen, when the bureaucracy with its systems and procedures gives a willingness to listen to the diverse lives of the people it is meant to serve, then progress can occur and as it looks at local services and says that although new solutions need to be co-ordinated at a Highland level but that they also need to be based with local workers and local users. You begin, albeit with huge scepticism, to think some change is possible.

Very briefly we have produced a series of other reports

Ward Rounds
We pointed out the horror of talking about yourself in a room full of people, some of whom are strangers, and made suggestions for improvements. Nothing much happened with this except that another authority used our report to develop standards for ward rounds.

Mental Health in Rural Areas
This was a study on mental health by Dundee and Glasgow University, which has gained funding for a two-year study into mental health in the Highlands which, will again involve us.

Quality
I find this a very important report but I don't know what impact it has had, except to be used by some organisations developing evaluation systems.

The Mental Health Act
This was a difficult report but we hope that it will influence the development of our mental health act.

Housing
This is more descriptive and I' m afraid that I really don't know what has happened as result.

We are in the process of writing a report on Current Issues and the Benefits system, and have a series of other reports on Respite, Labelling, Self help, The police, GPs and so on to write up.

That is our main activity, but we work in other ways for instance;

At a national level, we are on the Milan Committee which is reviewing the Scottish Mental Health Act, we participated in the Scottish Executive Mental Health Reference group that developed the Scottish Mental Health Framework, we give speeches and participate in national conferences and are involved with the Royal College of Psychiatrists Public Education group and soon to be developed Liaison group.

We also have contacts with local MSP's, all of which keeps the experience of users and users from rural areas on the agenda.

At a Highland level we keep plugging away on a series of groups and committees all involved in mental health. Some of these can be quite hard to deal with because the language of organisation and systems can seem a long way away from the language of users, but we do have the facility of inviting people to our meetings.

At a local level some groups are more active than others, and it is at this level that most activity is based with the members of HUG. It being impossible for me to do anything meaningful in the time we have, groups especially in Caithness, Lochaber and East Ross are especially active and it is important that we can develop an infrastructure that will support people in the work that they do, whether this be providing an escort service on the long journey between Craig Dunain and Wick or participating in a conference on children giving their perspectives on the point of view of families with a parent with a mental illness who are trying to bring up their child, or of young people with little facilities at all or of young people brought up in care finding their own children, going into care.

The things that are happening are exciting and thrilling and sometimes you think we can transform lives and then at other times we sit down and think to ourselves that the ignorance and stigma of mental illness will never disappear.

Our reports have consistently highlighted the need to change attitudes and over the last two years we have had funding from the Primary Care Trust to do just that and as you have talked about this in the morning, I will be brief in what I say.

We have concentrated on mental health awareness training and by getting mental health talked about especially in the media. In raising the profile of mental health we have distributed 55, 000 postcards on a mental health theme, some of which you can see on our posters.

In work with the media, we have appeared on BBC Scotland taking about suicide and on Grampian TV's Community Call. We were a part of a three thousand-word article in Scotland on Sunday and in a feature article in the Press and Journal, and we have regularly appeared in local papers such as Lochaber Life. For a time we had a monthly slot on Nevis Radio and we have appeared on Moray Firth Radio and BBC Radio Scotland amongst other things.

In our mental health awareness exercises we now have a database of 45 people willing to be a part of this process and are just setting up some training the trainers courses. In the meantime we have spoken from our own experience about what has and hasn't helped us with a range of people such as the police, general practitioners, advise workers, care assistants, housing workers, psychiatric nurses, mental health officers, health visitors, psychiatrists and social workers.

These sessions have varied from the general such as what is life like with a mental health problem to the specific such as what is it like to be assessed, or to be on special observations or on a section.

In conclusion can I say that we are not an answer to the establishment of local services or even to accessible services, but we are a start. In my mind services are not made accessible by virtue of geography alone, but also in the way they and the people who use them and work in them are perceived and in the way in which they respond to the needs of the individual as opposed to the system. By speaking out and joining in we are starting along a long, long road, as I am sure many of you have already done with you own activities.

Thank you

 

 


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

 

 

 

 

 

HUG Talks - Developing HUG Network