Hello
As has been said, I'm Graham Morgan and I work with the Highland Users Group.
Some time ago I was asked whether I was going to speak at this conference and because I hadn't been keeping up with Modernizing Community Care and because in HUG we are beginning to think that we have really done the speaking, that we know what we want, and now it's a question of getting the real changes that might make a difference, I glibly said that I would talk about turning the words into reality, to turn the meetings into real action and results.
There's nothing like setting yourself impossible targets. If I had the answer to something like this I would be ever so famous and ever so rich so what I will do instead is tell you an old story all about myself.
Fifteen years ago I was admitted to a psychiatric hospital in England for the first time and I would like to tell you four things that I remember from that hospital
One day when I was on the ward an old man was admitted because his mother had died and he couldn't cope. He was very thin and very sad and confused and he had trousers that were way too big for him and no belt to keep them up and for some days he walked around with one hand holding up his trousers. Sometimes he couldn't manage it and his trousers would fall down in public. I can't remember the reason for it, but it ended up with us patients providing a belt and helping him with his appearance. He died a few weeks after I was discharged from hospital.
The second thing that I remember is that the walls on our ward often had holes punched in them by patients. The repairs consisted of taping patients art therapy pictures over them and piling up any broken furniture in the least used of the rooms where the windows were already smashed.
The last two things I was told by a nurse I became close to. Within the nursing residence there was thriving drug culture to the extent that sometimes the nurses on duty were considerably more drugged up than us patients.
The last thing was that the staff had a series of codes for the notes they were keeping. I can't remember what they were, but they were a way of conveying how silly they thought some of the interviews that they had with us patients were. The code for me in sanitized form stood for "talks a load of rubbish".
These sort of experiences inspired other ex-patients and myself to set up a group called Mcmurphy's, which would now be known as a self advocacy group. We wanted the world to become a better place, and the thing that we thought would do this best would be to create a crisis center. Somewhere that would be open whenever we wanted it to be; a place we could go to when things were bad and we needed a bed to stay. We wanted it to be a place without workers and with people our own age.
We wanted disabled access and women only days and so on. It was great dream. We planned and talked and talked until talking became a burden and we didn't get a crisis center or anything like it, but we did get a user run drop in center which I visited once before moving house, and which I remember as being somewhere with gleaming varnish, food cooking on the balcony and somewhere someone playing pool.
I moved from England to Edinburgh and there we produced a report seven years ago calling for the need for crisis services and safe houses and when I last looked at the notes of their meetings they were still talking of the same thing.
In the years since then every user group that I have been a member of, or worked with, has also put a huge priority on crisis and out of hour's services accessible in the way and in the time that we need it.
In the Highland Users Group we repeated the same mantra. We wrote the words, we did the talks, but this time it seemed that were being listened to seriously. We were told that an out of hours service was going to be funded in Inverness that would be attached to Nessdoc, the out of hours service for GP's. This seemed brilliant. At last we were getting what we wanted. We may not have been very involved, but we were being listened to.
We even thought that we would be at the beginning of a blueprint for future services across Highland. The service was up and running in the autumn of last year and towards Christmas we began hearing rumors that it might close, which were confirmed this year when a member phoned up in crisis for help only to be told that the service no longer existed.
And that, to me, is hard to cope with; when for years you have been asking for something, when the right phrases are coming from the government and policy documents, you begin to feel tired to your soul and to wonder what the point of all this is when you are given what you want, only to see it taken away again.
But let us pause for a little bit. When we talk about change, we talk about change in both culture and large, perhaps conservative institutions, and our words may be demanding quick changes, but these sort of changes require a ground swell of opinion. I am sure we will get our out of hours and crisis services in time.
People are beginning to join together in agreement on this just as they did on the culture of the old hospitals that originally prompted people like me to speak out. The hospital culture and environment that I spoke of at the beginning is now close to becoming an aspect of memory rather than an everyday reality. That change has happened.
To turn the words into reality is the drip, drip, drip of reasoned argument that operates at as many levels as possible. It is the communication that strips away our stereotypes and prejudices. It has been comforting for me to sometimes see the barriers to change being a collection of nameless suited obstructive "them" concerned only with money and procedures.
Over time I have found out that most people would be only to happy to provide what we needed if it weren't for there own nameless people preventing change in their turn, and sometimes I think that we should go on a treasure hunt for the people who will not give us what we need, and sometimes I think that ultimately we would end up looking everywhere and nowhere, and looking to our own actions. When we see us all as people working to common ends, then we have room for change to occur.
That doesn't answer the fact that most of us cannot wait for year after year for change. We will get impatient and angry and fed up with the talking, and for this I think we need to build on days like this, and to take the different services to the people who are doing the talking, in the environment that they are in.
We need to make our services and our officials human and approachable in the perception of the communities that they serve. We need to look to the possibility that groups like HUG, which have traditionally felt on the outside, can actually feel like owners and allies in the development of the services that help them.
Make it human and real so that if we get fed up with waiting it is not due to misconceptions and accumulated resentment, but for justifiable reasons.
Thank You
