Psychosis

Right I first attended a group , at Sheffield Mind years, years before and it was a Social Worker that kept, it were, it were, in fact me wife got a Social Worker I didn’t but he made contact with me and told me about this group and, I said I wasn’t going to go, but he kept encouraging me, now I’d become the archetypical Schizophrenic, I didn’t wash, I didn’t shave, I was really scruffy and I, I made me way to this group one day and there was ten other people there, and what really struck me was they were all smart and presentable, and I remember thinking ‘well how can they be Schizos if they’re not scruffy like me?’. And they started to talk about their experiences and it was amazing, I actually thought ‘I can take this mask off’ ‘I don’t have to pretend anymore’ and it was, it was like a liberating feeling and, and I felt welcome and I listened to what they’d, happened in their lay lives and moved forward, and then they invited me to a Workshop at St. Matthews Church Hall, and I didn’t know what a Workshop was. I got there and I were thinking ‘well where’s the benches? What are we going to make?’ and in walked three people from the Hearing Voices Network and [sighs] just one guy with him he was a, he was a psychologist called Terry McLaughlin, and he’d started the network in this country. And, and I listened to all these people talk, people talking about trauma in their life and linking to voices and I suddenly thought ‘perhaps there’s another explanation from what I’ve been told’. But I was still on really heavy drugs so, you know, I couldn’t act on it but a, the seed had been sown about this, in this organisation, and I remember approaching Terry at the end, I didn’t know him from Adam, and I says to him, “Hi I’m Peter Bullimore and I’m a schizophrenic so I must be mad, can you tell me when.” [Clears throat] sorry. “I’ll be classed as insane?” And I was, and I’ve, I’ve got to Terry really well over the years and he just looked at me and he says, “Peter.” He says, “Why do you say you’re mad? And why do you use the word schizophrenia?” I says, “Because that’s what I’ve been told.” He says, “Hearing voices has nothing to do with schizophrenia.” He says, “You’re not mad, it’s society that doesn’t understand.” And his words were so profound, and they’ve always lived with me for years those words and it was kind of a big turning point meeting again others and looking at these different explanations but I tried to speed up the process I thought ‘I can do this on me own’, you know the no man’s an island and I thought I was that island you know? And I stopped going to the group, I didn’t realise how much support I was losing.

I think, I think certainly in Scotland, I don’t know about England so much, we’ve learnt a huge amount over the years. I’ll give an example. In the early days when I worked in Edinburgh I remember one of our members and myself, for the first time we were invited to see a psychiatrist and in those days that was such an event. You know, we went to the café and we giggled for the whole afternoon, saying what is he going to say, will he this and will he section us and all this sort of stuff. We were terrified at seeing him, and we had no faith that he would actually listen to what we were saying and we were completely shocked when he agreed with some of the things we said. There was this huge barrier. Nowadays up here certainly Now, psychiatrists refer people to HUG. They see it as a good thing. And I think we’ve grown to realise that not everyone who gets involved in what you might call the user movement has to be anti professional. Or see it as a them and us thing. Even those of us who’ve had horrible experiences tend to think that the people who are doing it, even if we disagree with it, are trying to do the best. Most people have a very... a very good motivation and actually there is so much to do that we all agree on, whether we’re mental health officers, social workers, support workers, psychiatrists, planners, policy makers, that if we just joined together we could, we could do really wonderful things. And I think that’s really good, and that’s us growing up and not being so caught on saying that all the people are bad so therefore we’re victims because we just see everybody with suspicion. We’ve grown up to take responsibility for our own views and have become much better at finding out our views. In many ways, certainly in the Highlands we have more influence than some professional bodies. But equally it seems to me that people tend to respect our views. We’re not just a group of angry people saying I don’t like you because you did nasty things. We’re finding out our views of a lot of people and expressing a reasoned, rational, logical idea of what can help us, whether is from medication to employment to ward rounds, to benefits. And we’ve grown up to find that we’re gaining a voice as a community. A very disparate voice. A, a rainbow of all sorts of voices but a voice, and... it’s quite exciting. It’s very, it’s very exciting. Because that voice hasn’t been heard for so long and there is so much, quite apart from changing things there’s so much that needs to be remembered. As a whole, there’s a whole community whose experiences are... are only just being recognised and registered. And to me some of the basic things is just getting those voices, not stored, but... there, so that you grow a history I don’t know that’s... how do you express it? You know, I’m lucky, I’ve got a job, I’ve got a house, I’ve got friends. Some of our members have had horrible experiences. They’ve been in prison, they’ve been homeless, they’ve lost all their friends, they’ve lost their houses, they’ve had no say in what happens to them, they’ve had the horrible reactions of some of the people around them and they’re living on a tiny, tiny income. And it’s such an act to gain the dignity and the courage to say I’m going to speak out about this. Not just for myself, but so other people don’t suffer this way and so that I can say things that will help people in the future. And it will bind me to people who have similar experiences to others. It’s a courageous thing to do and it’s a dignified thing to do and sometimes it’s all you’ve got. And it’s really, really precious. No one can take your voice away from you, but they can silence it. And we’re lucky here that our voice isn’t silenced. Although we’re still a small group you know. In Scottish terms we’re seen quite big, we’ve got 400 members, most of whom have had quite serious problems. The highlands has a population of 200,000. So at least 50,000 people in the Highlands will experience mental health problems at some time in their lives. So we’re a tiny, tiny group compared to the constituency we should be seeking out. But it’s a start.

Well we all, we all interact with each other, and try and help each other with whatever problem it is that’s arising. You know, what worries me more than anything is when I say to, I did a talk for a carers groups in Maidstone, a couple of years ago and direct Payments I think have been out for about twelve years now. And I said, “Who knows about direct payments?” And there was two carers out of 47. Now that’s terrifying that there is help out there, but carers don’t even know about it. And a lot of practitioners don’t know about direct payments. I think it’s the way forward. Individual budgets, direct payments. Giving people choice and control over their own lives 

I mean it’s just also for the carers if they can be, if they can be strong and that they need to get some help for themselves. Because sometimes when you’re dealing with it, you have to get some outside help to make yourself strong, because I could see myself, if I didn’t sort of step back sometimes, and if I didn’t try to talk to people who are going through the same thing, who’d understand that I was may be going through the same thing as them that I don’t know how I could have coped. Because nobody understands what it’s like unless you’ve been through it yourself. I mean like nobody understands what, the people that understand the most are the patients, or service users, whatever you want to call them. I mean they are the ones when they eventually get to a stage where they can talk about it, they can tell you how terrible it was for them, and they are the ones that have the most knowledge. But it takes a long time probably for them to get to the stage where they can actually talk about how they feel. And if you do talk to somebody who’s at that stage, you can get a lot of insight into how they feel. What I feel for, and I think probably their carers, it the only way you realise and get as much knowledge is from people who have gone through it. And have may be come through it. But you know that it can always go back to that again. You have to be aware of that. To me it’s like diabetes or epilepsy, because you, you, it’s an illness that will always be there [coughs] and it’s like know if you’re unwell, then your insulin might need to go up or down to control an infection, or adolescence or menopause, and then your epilepsy if you’re unwell and you need more medicine or less medicine or whatever, and it’s time to, to treat your schizophrenia like that as well. So knowing, trying to get the right medication, and then knowing when you need extra help for the service user, and for the carer as well. 

 I was doing amateur dramatics down the Custard Factory and that. With [name] and do performances about mental health and pantomimes and things like that. So things like that.

Yeah. It was very difficult, because like life, there’s no like a, no one’s standing there handing it to you on a plate. So you have to be quite resourceful, so I read a lot of websites. I went to book shops and read some books. And recently I’ve joined a group. Like a help group, which will help, and obviously I had my nurse and my doctor which helped me once, once I came out. So that was good. I had a lot of support with getting the areas of my life fixed up. So finances. Career. That kind of thing. Like a lot of professional support. And yes, I felt very dependent, but I felt like, I just felt negative about the whole thing, but then, yeah, looking back it’s like, how did I survive, I suppose? But you just do, do you know what I mean, you just get on with it? Like people who have physical conditions, they, like a backache or something, or broken leg or something like, disabled people they just get on with it I suppose and that’s what you do. And the fact is, that I was always told, oh you’ll get better. You’ll get better. Which was really important.