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’ page.
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...
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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.
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.
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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?
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...
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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.
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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...
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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.
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...
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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...
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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...
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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.
Last reviewed July 2017.
Last updated April 2014.
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