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Psychosis

Psychosis

Support groups, service user groups and charities

Some people we spoke to attended support groups;  others were involved in campaigning or political groups, or attended groups where they learnt a new skill. A few people were involved in user-led research and were involved in their local Mental Health trusts. Charities and other organisations (e.g. Mind and Rethink) run local support groups throughout the UK. Mental health support groups for service users and carers can provide a forum for people who have experienced psychosis to meet, talk, share experiences, gain emotional support, and talk about ‘what works’. Some people also used internet-based support groups and chat rooms to find information about psychosis or talk about their mental distress in confidence (for more information see ‘Sources of information’ and 'Mental health & wellbeing resources').

Other groups people went to provided useful, creative and relaxing activities such as cooking, gardening, poetry, creative writing, assertiveness training, art and music. Most groups people spoke about aimed to improve their participants’ general well-being. Many people had been to a support group, centre or organisation - some at their GP’s suggestion. A few people got help via their carer to attend, or went along with their carer. People were also involved in service-user groups that: campaigned for political change; tackled the stigma associated with mental health problems (e.g. the Time to Change campaign); or offered alternatives to psychiatric ways of understanding mental well-being and illness (e.g. The Hearing Voices Network). People additionally took part in service-user-led organisations that produced reports and research about service-user experiences and mental health policy (e.g. Suresearch).
 

Pete found he was surprised when he went to a ‘Hearing Voices Network’ workshop as people weren’t...

Pete found he was surprised when he went to a ‘Hearing Voices Network’ workshop as people weren’t...

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Age at interview: 48
Sex: Male
Age at diagnosis: 30
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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. 
Support
Many people appreciated the support and kindness from individual healthcare workers and fellow service users who wanted to share their experiences. Some people found it helpful to attend support groups to gain coping strategies (see ‘Strategies for everyday coping’ for more
 

Rachel found that a local Rethink group was a ‘life saver’ as it helped repair her relationship...

Rachel found that a local Rethink group was a ‘life saver’ as it helped repair her relationship...

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Age at interview: 47
Sex: Female
Age at diagnosis: 27
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And I got in touch with Rethink. And they were brilliant. I mean at that point they were the National Schizophrenia Fellowship. And, they got one of the ladies from the local carers group round to see my Mum. And she had a son with schizophrenia and she just sat and talked to Mum and just really let her know that life did not stop just because you have a relation with a severe mental illness. And that was a life saver. It was an absolute life saver, because, I mean, relations between myself and my Mum really had become deteriorated to the point where we were weren’t really talking to each other. Because I could never explain to her [inhales] what was happening. It’s very, very difficult to have to keep going over and over and over what is happening to you. Particularly if it’s a psychosis, because you can’t explain it to somebody else. And if you try, it just makes it even worse. Because there’s so much anxiety involved, and [inhales] if you are psychotic personally what used to happen to me was, I would visually hallucinate. I’d see the world blowing up, you know, it would literally be in flames. I could be watching the television one moment and think it was talking to me, in some incredibly malevolent way. Particularly if there was an actor or actress or something who looked like somebody that I knew. And, I think particularly with too many programmes you get an awful lot of eye contact, you know, so you can think they’re looking at you. The radio, again, if I was ever psychotic I would just have to have complete silence and just completely shut myself off. Which is obviously very distressing for somebody who is caring for you. 
 
But what I did, was to find out all I could about the condition that I had and I thought, right I’m going to do something with this and I got a fact sheet from Rethink about schizo-affective disorder and it was brilliant, and I kind of took my courage in both hands and I went along to one of their membership days in [name of place] and I met... some fabulous people. And I got involved and it’s a very useful thing to have done. Well because you meet an awful lot of people who are similar to you, or who have suffered more. And I think it’s always very useful to bring service user’s perspectives to what was essentially a carers organisation, so you can have some kind of [inhales] hopefully, understanding between the two. 
 
 

Graham talks about the history of HUG (Highland User Group based in Scotland).

Graham talks about the history of HUG (Highland User Group based in Scotland).

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Age at interview: 47
Sex: Male
Age at diagnosis: 22
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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.
A few people were involved in doing service-user research such as that done by Suresearch, as they wanted to have more of a ‘voice’. They felt that part of their recovery was connected to owning their story with others in a group with similar experiences. Often people had had no information when they were first diagnosed or unwell, and wished they had had more information and support. Rachel went to a group for people who had experienced sexual abuse which helped her to understand and overcome her experiences. At first it was frightening for a few people to talk to others about their experiences, but they built up their confidence over time. Carers too found information hard to get at first. Carers' groups could sometimes tell them about a range of things such as finances, symptoms, side effects of medication and coping with everyday life.
 

Georgina initially found it difficult to contact other carers.

Georgina initially found it difficult to contact other carers.

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Age at interview: 62
Sex: Female
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And how did you get this information when you went through it the first time?
 
 
I would say I’ve got a lot of information from other carers, because we all support, we support each other. You know, I help other carers, and other carers have helped me. And, and services. I mean I’ve had help from services. And I think it is getting better. It’s a lot better now than it was when [son’s name] first became ill.
 
What was there then?
 
Not a lot. No. I felt very, very isolated. And where do I go for help? But it is easier now.
 
And where did you meet these other carers who’ve been supportive?
 
At conferences, at carers groups, where did I meet them all? Mainly, mainly at conferences I’ve met carers. You know, that live all over the country really.
 
And why did you start …?
 
And I belong to carers forum on the internet as well.
 
oh right.
 
So.
 
Can you tell me a little bit about that?
 
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  
Another carer couldn’t relate to a number of groups she went to, but then found a Rethink group where she could speak to relatives and carers of people with schizophrenia.
 

Mary thinks that it is very important to talk to carers who have been through it themselves, to...

Mary thinks that it is very important to talk to carers who have been through it themselves, to...

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Age at interview: 61
Sex: Female
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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. 
Activities
Some people liked groups that were specifically for talking about mental health, others wanted to learn, participate in some activity, get more confidence, or just enjoy themselves.
One man we spoke to, Devon, said that ‘playing Scrabble and cards’ at a day centre wasn’t for him. He started a music project for service users, a centre called ‘Sound Minds’.
 

At one point ‘Green Lettuce’ thought that everyone in the hospital was trying to wind him up and...

At one point ‘Green Lettuce’ thought that everyone in the hospital was trying to wind him up and...

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Age at interview: 25
Sex: Male
Age at diagnosis: 20
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At one point I was meant go to hospital for a day and overnight. I can’t remember the exact reason why, but I just didn’t like it at all, so I phoned my Dad up and came home. I didn’t even believe, like, because I was trying to get to see a doctor and they were just saying that you have to wait, and I was waiting like four or five hours it was ridiculous. I couldn’t see anyone. So I, and I couldn’t believe that they were lying, because at this time, obviously I thought everyone was, was against me, and I thought they, they were just doing it on purpose, made me worse. It did. That actually made it worse. So I really did thing they were just trying to make me worse. Even though they probably weren’t. It was just they were too busy. 
 
And then when you said everybody was against you, did you also think about your family and friends?
 
No. Not really. When I went, I was in the hospital, I didn’t bel… I thought like when I phoned my Dad up to get him to pick me up from the hospital, that it wasn’t actually my Dad on the phone, even though I knew it was his voice, but I thought it had been someone from hospital winding me up. And I had to like ask him questions that only he would know, to prove that it was him. That’s like what I was thinking at the time. They were just winding me up. 
 
 

David started doing pantomimes, open mic sessions and comedy sessions for service users. Although...

David started doing pantomimes, open mic sessions and comedy sessions for service users. Although...

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Age at interview: 40
Sex: Male
Age at diagnosis: 18
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 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.
 
I’d love to know more about that? What was going on?
 
Oh it was just a thing down the Mag… down the Custard Factory called Mad cap in NV17 about 47 of us there. We used to perform little performances and that around city day centres and the Old Crown would do little Monty Python sketches. There’s an open mic session there once a month. For service users. Yes, just goof about and go home.
 
Did you have good time doing that?
 
Yes, I do actually, yes, I’m still friends of [name] yeah. It’s closed down, because it lost funding. But they want to start it up again. And I pulled out about a year and a half ago. It closed down about a year, and opened up a year later. It was really good. We soon lots of people, people like to come and things like that.
 
What was good about it particularly?
 
It was just fun devising plays and that you and acting it if you get a reception it’s been you know …
 
Were you ever nervous before you performed in front of people?
 
A bit yes, I suppose so, yes. I did. But not so much now… a little bit nervous is good I suppose. 
Learning a new skill with others
Some people got help with particular difficult areas in their life or learnt a new skill.
 

Ceridwen was persuaded by her step-dad to go to college and improve her skills. At first she was...

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Ceridwen was persuaded by her step-dad to go to college and improve her skills. At first she was...

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Age at interview: 27
Sex: Female
Age at diagnosis: 20
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And then [name] my step Dad who is brilliant. He’s a cabinet maker, and an art teacher, he bought a bunch of craft magazines and found [name] College and said, “You’ve got to get out of this house, you can’t stay here. You’ve got to, you’ll end up killing yourself, because you’re going to get so ill and so depressed, and you’re on your own.” Because he was working [my brother] was working. So he sent me to [name of college] once a week and they have been so supportive. They’re mostly elderly ladies. I’m the youngest except for [name] and [name] who have learning difficulties. I’m the youngest by about 30 years. But they have been so kind. 
 
Because when I first went, I had my head down like that. I wouldn’t talk. I didn’t want to speak. I didn’t want to do anything. [name], well as I say my transport manager is also a good friend. He said, “When you first came, I would talk for half an hour to an hour and you wouldn’t say a word.” I would just grunt occasionally if that, and I had my head down. I didn’t want to be part of the group, and I learned to do crafts. And over the years, I’ve got better and better, with their support and their kindness, to the point where I am now that I’m… I’m nervous day after today, I know they’re not the cause of how I am now, but they’ve helped. And with my Mum dying, they’ve been great, and things like remembering it’s my birthday, you know. A lot of people wouldn’t bother with that. But they do. They made me a cake one year, I’d never had a birthday cake before. And it’s just a wonderful environment. 
 
Yes, you do craft work, but you get to talk to people and meet people and there are about thirty people there.
 
And how long have you been going to this group?
 
Nearly seven years. I start… Yes, I went about three months after my Mum died, so it will be seven years in June. Near about around June. I’ve made some very good friends there, who’ve been…. 
I also did a basic cookery course at the Blind Centre in [place name]. And I was talking to [name] who’s a friend. I said, “These amazing talking scales, they’re wonderful, but they’re about forty quid.” And they did a whip round for me at college. And paid me for my talking scales. Though I didn’t ask them to. They just did. 
 
 

Jenni wanted a lot of help to get her life back on track. She joined a help group, sought help...

Jenni wanted a lot of help to get her life back on track. She joined a help group, sought help...

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Age at interview: 30
Sex: Female
Age at diagnosis: 26
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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. 
A couple of people had taken social skills classes like ‘assertiveness’ training. (For more information on recovery see ‘Recovery’).
 
Personalised help from social services and charities
A few people were starting to use the Direct Payments scheme to enable them to go to classes, or pay for a carer to accompany them to different places. A carer employed a PA (personal assistant) for her son through this scheme. Robert had got specialist help from a drug charity that helped him with drug abuse issues and money problems. His housing officer helped him organise a Debt Relief Order to sort out his finances.
 
Difficulties with using support groups
Going to a group didn’t suit some people because they didn’t want to talk about their problems with others and didn’t want to have only friends in touch with mental health services. Margaret particularly wanted anonymity - she didn’t want anybody at work to know she had schizophrenia, so didn’t attend.
 

Colin didn’t want to get involved with service user groups and found it hard to concentrate.

Colin didn’t want to get involved with service user groups and found it hard to concentrate.

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Age at interview: 40
Sex: Male
Age at diagnosis: 19
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No, it’s as I say, I think I’ve got better. I met a few people in hospital, you know, that I did no wanna get like, because you get like you know, you know, I mean there are all these committees and groups that one can have, you know, patient input. [tapping noise] and stuff, but I don’t really want to go down that road. I like thought, I don’t really need that much that. I don’t really go in there. Initially because I wasn’t really in any way thinking I was able to be, you know. That’s why I fought to get off the drugs. I didn’t really think I was able to, you know, to focus on anything that much at any given time. So just really, you know, just wanted to get. All my friend used to say, just try and, you know, to get away from it. But it took me a while. No I just read on more of the wikipedia last night [laughs]. Doing that with the phone like, we both want that. Its just not… and I’d probably read a bit about it. I mean we’ve got information centres and up town like. But what I was I was doing, I was going up there, typing up my story like. Obviously we could get all the information like leaflets and everything like that. I mean I get better, when I get well, or just fairly well for a long time, I just, I don’t really you know, as much as possible.
Tom had been to an art group, but wanted to paint privately in his own studio and not with others. One person said they already had enough support at home, whilst Tim didn’t want to go to a Rethink group as he thought it was too depressing, such as when he heard about people who had committed suicide.

Last reviewed July 2017.
Last updated April 2014.
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