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Psychosis

Experiences of Out-Patient and community support

The majority of current day mental health care is provided by services in the community and not in hospital. For example, people talked about using day centres, day hospitals, and being a hospital outpatient. Various kinds of professionals were involved in caring for people in the community including: support workers, GPs, CPNs (community psychiatric nurses), psychiatrists and social workers. There are different types of mental health teams that operate in the community. ‘Home Treatment’ or ‘Crisis Resolution’ are teams that are available 24 hours a day for help in an emergency. These teams try to treat people in the least restricted way and as close to home as possible. Early intervention teams also operate in the community and these services are aimed at 14-35 year olds during their first episode of psychosis. People experiencing psychosis for the first time often received intensive support in all areas of their lives to try to help towards a lasting recovery. Many people had contact with a Community Mental Health Team (CMHT) that is a multi-disciplinary team to help support people in the community on a daily basis if they need it, or only at times when they need support. If many people are involved the care of an individual, people will often be allocated a ‘care coordinator’ or a ‘keyworker’ to oversee the type of support they are getting. Occasionally people see Assertive Outreach Teams that provide intensive support for people who have traditionally avoided mental health services and are judged to be vulnerable. For more information on the different types of mental health team see the ‘Resources’ section.
 
First contacts
When people were first experiencing problems - often feeling anxious or depressed – they often went to see their GP. Some people didn’t go to their GP even when feeling highly distressed, and only had contact with their doctor when they were first in crisis. Some people didn’t want to admit that they might have mental health problems, and so avoided getting help. Others were too frightened to get help. Stuart thought that his GP might belong to the KGB, and so was too scared to see him. When people were in crisis the GP often referred them to a mental health team immediately, and some people were admitted to hospital straight away.
 

William talks about reaching ‘crisis point’ and becoming so angry that he felt he had to see a...

William talks about reaching ‘crisis point’ and becoming so angry that he felt he had to see a...

Age at interview: 47
Sex: Male
Age at diagnosis: 45
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So I think I was about 18 or something it was really, reached crisis point. And I actually remember what I did. I mean one day I was literally throwing things around in my living room, when my parents weren’t there. Where I used to live before. And it was like, I was so angry that I had to do it, that I had to go to the doctor [laughs]. And it comes so easy nowadays, what a change, you know. And I don’t, I went to the doctor, and then I got my Mum involved, and she said, “Oh he wants to see a psychiatrist.” And, and, you know, I was told all these things. “Do you want to be viewed as mad?” And all that. “Do you want to go to the mental hospital?” And you know, it was all like real negative. And the GP really, he just gave me some pills to take, and said, “You know, you don’t want to see psychiatrist. It’s meant for people that are mentally ill.” And he didn’t. And you know, I kept seeing him, and taking different pills and it all started from there. And then eventually I did see, you know, various people, eventually, within a year or two. But it, it sort of was difficult in the early stages of trying to get help, because I couldn’t really say what I felt like. And that’s why I probably needed my mother to speak to him sometimes really. But you know, it was still better than before I got into the system. 
Janey can’t remember why she first went to the GP, but that they ‘picked up on’ the fact that she was having mental health difficulties; she said that he was nice but it didn’t help that he was a family friend.
 

Naveed first went to the doctor for stomach pains, and after some time was told by a doctor he...

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Naveed first went to the doctor for stomach pains, and after some time was told by a doctor he...

Age at interview: 42
Sex: Male
Age at diagnosis: 15
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And one day we went to the GP and my Dad said to him, “Well, you know, he’s in a lot of pain. He stays awake some nights with the pain.” And the doctor examined me, and said, “Well there’s nothing wrong with the boy. If I send him to hospital, they’re just going to operated.” And my Dad goes, “They’re not going to operate without, you know, having x-rays and checking to find out what’s wrong like.” But the doctor said, “No, no. They’re just going to operate.” So that scared my Dad. So we came back home and for about six years, I just sort of lived life, you know, with those problems. I didn’t go and see anyway. But they were terrified, because the doctor scared them, that if I had to go into hospital to have check ups, they were just going to operate. And then I think when I was about 15, 16 years old, we decided to change GP. And I went to this new doctor and he started treating me privately first. He used to give me an injection and he said that he was going to try and arrange for me to go and see a specialist. And then I got an appointment through to go to the, I think it was [name] Hospital for check ups on my stomach like. And I had all these different tests done and I was asked to come back in about ten days time or whatever. Then I went back after the ten days for the results and I was in this room and I was lying on couch, or that bed thing, and this consultant and a lot of students, they didn’t even ask my permission, and all this students walked in, and I was laying on the bed, and he said, “Do you want to know the good news or the bad news?” And I said, “Give me the good news first.” And he said, “Well there’s nothing physically wrong with you actually. Nothing physically wrong with you. You know, it’s fine.” I said, “What’s the bad news?” And he goes, “I think that you’ve got mental health problems. But after getting in touch with the GP and we have to see if he sends you to a expert and then you get it from them. But as far as I’m concerned you have got mental health problems.” 
 
And how did that feel?
 
I didn’t even know what mental health problems meant at the time. And I came home and then I went to see my GP and he tried to explain to me. And he gave me a cassette to listen to, and that sort of explained about depression. And when I got home, I mean I was so angry, you know, after I’d listened to that cassette, because I said, “This can’t be me. I’m not mad, you know. People are going to think I’m mad and I’m not mad, you know.” That was my biggest concern was I’m mad and that’s how people are going to react to me. I was angry I was taking it out on my Mum. I wasn’t eating. I mean she used to carry my food around chasing me, “[Naveed] will you eat this?” “Eat that.” Right and I wouldn’t. I was so angry with the world and everything. And I said, “That can’t be me, because I’m not mad.” But I was terrified, you know. But that’s when it was decided. I mean I went to see the specialist. Like my GP sent me to someone and they sort of confirmed that, “Yes, you have mental health problems.” And came back home, and we discussed it as a family and it was decided that no one outside the family was going to know about it. My Mum, my Dad would know about it. Dad said simply leave it, you know. But it was decided that them two and myself, apart from us, no one is going to know about it, because, you know, people will start saying that I’m mad and this and that. So it was kept a secret for years and years.
 
People didn’t only get help from GPs. John said that the first person he thought of when he was distressed was his pastor. Arwen’s music teacher, whom she liked, detected problems and thought she might need to see a psychiatrist.
 
Positive experiences of support in the community
Over time people developed some good relationships with a range of different professionals who supported them in the community to maintain and improve their mental health. People managed this in different ways' by being able to talk to an expert psychiatrist about their problems; by being enabled to adopt a radical approach to mental health that supported their own interpretation of their experiences; or just by going for walks with a member of the mental health team. Whatever the route, people valued professionals who took time to speak to them, took them seriously and demonstrated caring.
 

Green Lettuce had different members of a mental health team visit him at first.

Green Lettuce had different members of a mental health team visit him at first.

Age at interview: 25
Sex: Male
Age at diagnosis: 20
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But I was soon referred to my, a support worker and he came round every week and talked to me. And she saw how I, she saw how I was getting on. And that helped a lot as well.
 
And what were they like?
 
Yes, they were good.
 
Was it a guy, woman?
 
A guy. I had different people come round to begin with, but I only saw them one time, and they were just talking about general stuff, do with what Psychosis, and, but I didn’t see them again till… I’m not sure. But the main guy I saw every week or two for about two or three years I think. He visited me at college as well.
 
And what types of things was he talking to you about?
 
He was just asking if I was getting better, really most of the time. Then I think I had some cog… I can’t
 
Cognitive behavioural therapy?
 
Might have been that. Some woman came round.
 
CBT?
 
Yes. I had to write my, get my days back into normal routine and write down when I got up, what I was doing all day. In Ex... on the computer and that helped. It got me back into a normal routine.
 
And did you like the woman that came round?
 
Yes.
 
What did you like about her?
 
She was just easy to talk to and. Would listen to what I had to say. That’s about it really.
 
And what about this guy, this support worker that came round for two years. Why did you like him?
 
The same reasons really. And he gradually got me to go out more, because like he would drive me to the beach and stuff, and go for a walk, and... 
 

Devon’s keyworker helped him get a place of his own, and got him involved in some community work...

Devon’s keyworker helped him get a place of his own, and got him involved in some community work...

Age at interview: 52
Sex: Male
Age at diagnosis: 22
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And it was that time, I was still having problems with my Mum actually, because my hair was still long, and she couldn’t cope with that. So I said to my key worker at the time, “Can you help me to get my own place.” So, the local housing for people with mental problems and they found me a flat in Battersea. So I moved in there, and I lived there for a while, and at that time, my key worker, who was my psychiatric nurse. Community psychiatric nurse. Used to come and give me my medication. And then what happened is, he said to me, “Devon, I know you used to be a musician with some of these black guys didn’t you in the community before you got ill?” I said, “Yes.” He said, “I’m bringing you to a place in Balham, where some of these guys black guys, they’ve just left prison and I want you to start running some music sessions with them. 
 
So he took me to this place, a hostel in Balham. I met the warden and then he said to me, “Would you like to do some voluntary work here?” I said, “I don’t mind.” So he said, “I’ll introduce to some of the residents we have here.” So he took me up to this bedroom, and I could some of the black guys had pen knives. Flicking like this. They were bad guys and they were flicking like that, and looking at me that they would stab me with them. But I wasn’t afraid, because I used to that sort of ghetto, with that sort of attitude, you know.
 
Anyway, so they arranged for me to go to the local school and run a music session with them, and I used to come in of a morning, wake them up, tell them to go for breakfast. Sometimes I would take down to the Social Security to sort their benefits out and then after that we would come back to the hostel, and have something to eat. Then we go into the school and do some music workshop. 
 
 

Rachel now feels supported at home as her community psychiatric nurse comes to check on her.

Rachel now feels supported at home as her community psychiatric nurse comes to check on her.

Age at interview: 41
Sex: Female
Age at diagnosis: 19
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So I just kept working, but periodically I’d go into hospital and I’d have about six months off work. So it was very stressful keep becoming unwell, get better, keep becoming unwell, get better. 
 
So it was really, really hard work and I now feel a lot more relaxed and people say that I am a lot more relaxed, but one of the reasons is, is that not that I was non compliant but sometimes you start to get high and you’d feel better and may be you weren’t as organised with your medication and things like that where now they bring it to my house, and they bring it to my house every three weeks in blister packs and the other thing is that is I’m monitored. Because she comes to my house, my CPN every three weeks, that means that, you know, whereas before with other times in [name of place] and [name of place] where it was very busy you had to go to them. If you became slightly unwell, you would end up missing appointments because you felt unwell, so you didn’t go. If I feel unwell at home, there’s a knock on the door, and I just open the door and there she is and just, “How are you.” And I say, “I’m not very well.” you know, and it’s a completely different set up. And that’s only from being in [name of place] where services are very good. So it really is a post card lottery as to where you live as to what standard of care you get. Which is quite amazingly different to be honest. And when I was unwell up here, they got the crisis team and they used to come out to me, including weekends, and they come out to me every day for at least a couple of weeks until I felt better to do without them. 
 
 

Pete was helped by an occupational therapist to build on a ‘turning point’ in his life, and...

Pete was helped by an occupational therapist to build on a ‘turning point’ in his life, and...

Age at interview: 48
Sex: Male
Age at diagnosis: 30
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And then I fell into a relationship with someone a lot younger than me and people said, “You shouldn’t go out with her she’s got a history for violence.” And but I’d been on me own for about God knows who many years so I thought ‘in for a penny in for a pound’ you know what it’s like at times, and at first everything was okay and then one Friday night she got extremely drunk and I realised that [laughs] it was the Friday again and for no reason she smashed a vase in me face and put fourteen stitches in me face and carved me body up like a draughts board, and that went to Crown Court, and [name] came with me, and we came out of court and she said to, “How are you?.” I said, “I’m glad it’s over [name].” She said, “I didn’t ask you that Pete, I said how are you?” I said, “I’m alright.” And she said, “How are your voices?” And I suddenly realised I hadn’t got any. She says, “You’ve just turned the corner of your life, everybody reaches a major turning point and this is it for you. Any other time this amount of stress would put you back in hospital.” She said, “You’ve got to build on it.” And I said, “Well I don’t know what to do.” And she said, “Well there’s a pub across road, we’re going to go in there and if we have to sit in there and get drunk we’re not leaving until you decide what you’re going to do.” So you can imagine I dragged that conversation out as long as I could. And eventually she encouraged me to start a Hearing Voices Group, I was reluctant at first, I’d been to one years before at Sheffield Mind and that had closed down and we started the group together and today we’ve now got eighty-five members and that was really the start of me turning point on recovery by getting more involved with services. 
People got a variety of different types of care. Arwen’s occupational therapist taught her to swim to help combat the weight she had gained through taking medication. Stuart’s GP intervened to advise his psychiatrist to prescribe medication that didn’t lead to so much weight gain. A couple of people had not seen a psychiatrist in some time, and so get their medication from their GP. A couple of people felt that the specialist knowledge that their psychiatrist had about them, and their diagnosis, reassured them.
 
Negative experiences of support in the community
Whilst many people had positive experiences of receiving community-based care, others voiced their dissatisfaction. Some people felt professionals put pressure on them to take their medication; were unreliable; let them get too unwell without intervening or that they weren’t empathetic enough. Some people even thought that health professionals can be frightened of people with mental health problems.
 

Ceridwen thought that the Home Treatment team she saw was 'useless' as she wasn't safe to be at...

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Ceridwen thought that the Home Treatment team she saw was 'useless' as she wasn't safe to be at...

Age at interview: 27
Sex: Female
Age at diagnosis: 20
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I was ill for about seven or eight months. I wish I’d been in hospital, but I wasn’t. I was on home treatment. Which made it drag out.
 
Tell me about that time?
 
Oh. God. Useless people. Useless, useless people. Just messing around with my meds every week. Changing them and all that. Give them time to work. And I was psychotic. I should have been in hospital, because I wasn’t safe to be at home. I put my arm on a hot plate. I, as I say I went out with the carving knife to kill my next door neighbour. I thought something stopped. I don’t know, my conscience. I don’t know. I don’t care. It stopped me. And I went back inside, and no I’m not going to [name of neighbour], whether you say so or not. I was paranoid beyond belief. The voice was telling me to cut off [cat’s name]’s tail, and I thought I’ve got to do it, but I don’t want to do it. Because I love him. And again something stopped me, probably my conscience. And I never did it. But they were saying, “Cut his tail off. Or your brother’ll die. If you don’t cut [cat’s name]’s tail off.” “I don’t want to cut [cat’s name]’s tail off. I love[cat’s name].” And I was really ill. And home treatment, actually, although some of them were kind, were generally absolutely useless. And I never want to be on home treatment again. Because they didn’t help. They would tell you to take a couple of pills and go to bed. Like that’s going to help. And they are all generally nice, but though I don’t like being in hospital, I think it’s the best place for you when you’re ill. Yes, it’s safer.
 
Cat said that she had had to be quite ‘forceful’ in order to get different types of support such as talking therapy and help with housing. David found that it was hard to communicate with his social worker, but found the next one he had helpful at sorting out his benefits. A few people found going to day centres helpful, but one woman said that her day centre was depressing and boring for her son.
 

After leaving hospital Graham saw a psychiatrist who he thought was ‘weird’ and specialized in...

After leaving hospital Graham saw a psychiatrist who he thought was ‘weird’ and specialized in...

Age at interview: 47
Sex: Male
Age at diagnosis: 22
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And what happened when you left the hospital?
 
Nothing much. I went back to university. What did I do? I was meant to see the doctor, so I would turn up to the doctor. And then I was meant to see a psychiatrist. And he was really weird. It was very strange. He must have been some arcane therapy, because I would go in and see him, and first of all we had a language barrier. We were from different cultures and he really didn’t understand much of my language. He had quite a poor grasp of English. So when I told him things he would get it wrong and I was quite inarticulate too, so it didn’t help him either. But he specialised in silence [laughs]. It was really weird. You’d go in and he’d say, “How are you?” And I’d say, “Fine.” And then he’d say, “Yes.” And I’d sit there and he’d sit there and after about ten minutes he said, well, I’d be about ready to speak after ten minutes because it was really getting very painful by then. And then he’d say, “Well that’s fine, I’ll see you in two weeks time.” And off I’d go again. So eventually I stopped going to see him, and then they sent someone down to make me come back to see him, but eventually I stopped seeing him. I carried on seeing the first doctor who was, who was good. He got very frustrated with me sometimes. You know, he would say, at that stage I had a personality disorder according to them and he would, he would do things, like saying he won’t see me if I carry on cutting myself and that would be really hard. And then if I phoned Nightlines or things like that when I was feeling suicidal they would phone the doctors because they would get worried and then he’d tell me off for doing it. But then after times he would say he could see me living in a rosy cottage in the future with children. And that seemed so unbelievable I would just laugh inside. But you know, eventually I did end up living like that for a time. And it was very good. And sometimes he would say I had to accept that life for me would always be miserable, because it would never be light and I had to get used to it, and that didn’t help. I think he was just frustrated. Because at other times he’d say, “You know, it can be good.” But always when he left you, you’d just feel dejected. You’d sort of walk along with your heart on the floor saying, “Why should I go and see him?” Even though he was trying to help he didn’t really know what to do. And may be there wasn’t anything to do. 
 
 

Ron thinks that staff are moved from psychiatric institutions into the community without being...

Ron thinks that staff are moved from psychiatric institutions into the community without being...

Age at interview: 51
Sex: Male
Age at diagnosis: 23
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You see we talk about institutionalisation as if it’s part of being in the hospital but I think institutionalisation in the community is as big an issue I think I, you know, I think when we move from hospital-based care to community-based care, what we did is we created trans-institutionalisation where we transferred the institution to the community and that is still as bad an institution as the thing, and, and, and the thing a, the biggest thing about that is we moved loads of staff out of the institutions and put them into the community, without trying to work on any change programme with them, so you can take the staff out of the institution but could you take the institution out of the staff? Which would have been a question that should have been asked in the Eighties, you know, it never was asked so it was probably too late. and I think this trans-institutionalisation means that people for instance will stay on community nurse’s books for years and they don’t need it. But it’s almost like a community, I’ve met Psychiatric Nurses and other people that have fifty-five on the caseload, but when you actually go and work through their caseload with them there’s twelve active you know, and the rest they, they’re are either doing a Depot or phoning once a month to make sure they’re okay but they’re on their caseload so they don’t get any more work. And rightly so because I think you can work with much more than twelve active anyway but surely we should be able to discharge them you know, and get them off caseload and say, “These are the, these people are no longer on the, in the system.” You know? so I, I guess for me that the hardest part about this going back and forward was breaking that institutional thinking in my own head. That I, because you’re socialised into being a patient, you know the system creates more than just the diagnosis it creates this, patient that’s a patient whether they’re in hospital or out of hospital, like most people when they go to Out-patients don’t consider themselves patients you know? They’re going to get normally get discharged you know, there’s, it’s a follow-up after an operation they’re going to get discharged, don’t think to yourself, you don’t think ‘I am a heart patient’ you know, whereas in Psychiatry you know? And they need that illness because that’s reflects for them then who they think they are. Yeah. For me it’s about moving beyond that, thinking ‘I, this is not who I am, this is who I am, I’m all these different parts, you know, I’m the four faces of men or man’ or whatever, however you want to describe it. 

 

Georgina was upset when one of her son’s social workers made her feel she was upset about...

Georgina was upset when one of her son’s social workers made her feel she was upset about...

Age at interview: 62
Sex: Female
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And can you describe to me the kind of relationships have you had with [son’s] social workers?
 
[Son’s] some of them have been absolutely excellent. And some of them have been absolutely dire.
 
There was one in particular who I rang up crying, and she said, “Oh I didn’t know you wanted tea and sympathy.” And I said, “Actually, that’s exactly what I do need, tea and sympathy.” And she was one that made me feel that made me feel as if I was just dealing with something very, very trivial and not a severe and enduring mental illness. And I can remember thinking, you know, if only you could come and live in my house for a few weeks, and cope with what we have to cope with, you would not adopt that same attitude. The best practitioners are ones that treat the whole family. Involve the whole family, and don’t you know, see it as I’m on my high horse, I’m the professional and you’re just a low down carer. That’s not what it’s all about.
 
For more information about how services in the community may have helped recovery see ‘Recovery’. For more information about talking therapies such as counselling see ‘Talking Therapies’.

Last reviewed July 2017.
Last updated April 2014.
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