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Psychosis (young people)

Support from GPs and mental health services

People who experience psychosis can receive treatment and support from their GP and mental health services as an outpatient. You can read elsewhere about receiving care in hospital. There are a number of different teams who provide outpatient services:
  • CAMHS – Child and Adolescent Mental Health Services who see people aged 17 and below
  • CMHT – Community Mental Health Teams who see people age 18 and over, and have Crisis teams
  • EIS (or EIP) – Early Intervention Services (or Early Intervention in Psychosis) who see people within the first 3 years of their first psychotic experience
Typically people who experience psychosis receive some support through an Early Intervention Service (EIS) – sometimes known as Early Intervention in Psychosis (EIP) teams. EIS see many young people who are experiencing distress and have been experiencing psychosis. Research has shown that people who experience psychosis and receive support and treatment quickly respond better to that treatment and recover more fully in the long term. EIS services want to get people into treatment as soon as possible, (i.e. within weeks of the psychotic experience). When someone is referred to EIS, an initial assessment is carried out to see whether the person fits the criteria for support, for example, whether symptoms are regular and severe enough for the person to be assisted by EIS.
 

Emily was “distraught” when EIP services said they couldn’t help her. She was self-harming, hearing voices and facing homelessness when her psychologist helped her to get admitted to hospital.

Emily was “distraught” when EIP services said they couldn’t help her. She was self-harming, hearing voices and facing homelessness when her psychologist helped her to get admitted to hospital.

Age at interview: 23
Sex: Female
Age at diagnosis: 21
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Just sort of thinking about the help that you've received from the CMHT, Community Mental Health Team. Were you seeing CAMHS before that?

Yeah, when I was younger I saw them.

But not about the psychosis. 

No, I never talked about that.

Talked about it, yeah. Did you see it's like an early intervention team?

Yeah, I saw EIP when I was living with my sister. That was before I went into hospital and they came to my house and they asked me questions about it. And I think because I wasn't schizophrenic or anything, I didn't have that diagnosis. They just looked at me and said, we can't help you. I remember I was so like distraught after, because I thought, finally, these people know about psychosis. They can help me. But they just, they said, they can't help me at all. I was hysterical. It was horrible. So I just thought, no-one can help me. I am on my own.

So you hadn't had the diagnosis of the borderline personality disorder then?

No. That was before my first admission to hospital. So it was before all of that happened they came and saw me.

What age were you then?

I would have been about 19, 20, just before.

And you were talking to them about the voices?

Yeah, they asked me questions about what they said and what it's like if I watch TV. If it's like people talk to you. And I was, I was really open with them, because I thought I needed to be. I can't keep lying. So I thought, if I'm completely open they can help me. But they just said they couldn't do anything. 

Just to sort of get the chronology, then you, so they hadn't helped. And then you talk about them going into hospital the first time?

Yeah. 

Was that when you sort of been turning to drink and then—

Yeah, that was after. Yeah, after I saw EIP that's when I started getting really bad. And I was seeing the psychologist and then, yeah, that was before my first admission. 

Then it was the psychologist that helped to get you to hospital.

Yeah, she put me in. I went to see her for an appointment one day and it was the last day that I could have stayed in the hotel that I was living in. And I was just gonna run. My mum said to her, you know, you need to do something or I'm gonna lose her. 'Cos I would have just left and I'd probably still be out there now. But she got me into hospital the first time and it was, I was safe. You know, I couldn't hurt myself. And I learned a bit more about everything and got my diagnosis. 
 

Joe’s school counsellor quickly referred him to EIP when he said he was hearing voices. But he then had two weeks seeing lots of different people before he started getting help.

Joe’s school counsellor quickly referred him to EIP when he said he was hearing voices. But he then had two weeks seeing lots of different people before he started getting help.

Age at interview: 23
Sex: Male
Age at diagnosis: 21
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Because I was already seen a counsellor at uni about depression.

Okay.

But I [sigh]. I went and said, "I'm hearing voices and seeing things." And it is amazing how quickly a university guidance counsellor who was a bit crap will switch from not really caring, to be being very, very efficient, when you say "I'm hearing voices telling me to kill people." [Laugh] Yeah.

Within like five minutes I was on the phone to the psychosis service, and they were saying "Okay, we'll set up a meeting. You should come here and we'll do this - we'll, we’ll, you know, we'll talk through it a bit, and you can come here." And that was sort of - [sigh]. I think I saw about seven different people in two weeks. Which I wouldn't do again. Because I - All, all of them said "Okay, I think - I think you have this, and this is why this is." And I got nine different answers from seven different people, in two weeks. And when I actually settled into one place and was dealt with by this person, that was fine. But seeing this sort of bizarre array of faces. Faces are another weird thing for me, because if I'm sort of having a bad episode, faces just kind of morph, and go weird and awful, and scary. 

Right.

But that - Especially new ones. So like if you were locked in a room with somebody who just looks a bit scary [laugh]. Yeah.
EIS offer a wide range of support and can refer people onto other services. Dominic said, “Most of the support I've had has been from EIP. They are an actual NHS organisation. But they worked with a lot of other foundations, a lot of other people. They are the ones who got me into my CBT groups, which were just fantastic. They're the ones that got me into the charity event days.” (See support groups).
 
First contact with mental health services
 
There was no single route into mental health service support and some saw a variety of health service providers before they got the help they needed with their psychosis. Many people saw a school counsellor or GP for help initially, and some went to A&E or called emergency services. Some of the young people had been receiving help with their mental health long before their first experience of psychosis, for example due to low mood or other health experiences. Luke began seeing a counsellor when he was 12 and Andrew Z, was given a diagnosis of Asperger’s Syndrome during his childhood and saw a psychotherapist. Hannah and Sam were already seeing CAMHS for low mood and depression when they had their first experiences of psychosis. Mental health teams could link people into other services and support networks. See getting help in the early stages
 
Making first contact could be daunting and often happened at a time when psychotic experiences were at their worst.
 

Dominic called 999 after he had a psychotic experience and was taken to see his GP. When he told her about the “voices that everyone hears” she explained that not everyone hears voices.

Dominic called 999 after he had a psychotic experience and was taken to see his GP. When he told her about the “voices that everyone hears” she explained that not everyone hears voices.

Age at interview: 24
Sex: Male
Age at diagnosis: 21
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​I rung up the emergency services, rung up the ambulance and I said, I was trying to talk to them about what's happening. And I'm, I'm saying one thing and then skipping to another thing that I'm trying to say and going back. And it was so incoherent. They ended up coming out, helping me and taking me to my GP who was amazing. She was brilliant. She helped me, calmed me down. She spoke to me about everything and I said, ''Look, these voices that everyone hears.'' And she goes, ''I'm gonna stop you there. Not everybody hears voices, Dom.'' I'm like, ''What? What do you mean?'' She said, ''You know, we're gonna get you all the help you need. Calm down. It will be fine.'' And the next day I had my first, then I had an appointment. And that's how everything started off.
 

Andrew X knew “something was wrong” but didn’t know “it was mental health”. He was “petrified” when he was first given a Mental Health assessment.

Andrew X knew “something was wrong” but didn’t know “it was mental health”. He was “petrified” when he was first given a Mental Health assessment.

Age at interview: 24
Sex: Male
Age at diagnosis: 14
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I found it really difficult to make sense, because I knew something was wrong in me - didn't know it was mental health - knew something was wrong. I was petrified about being sent somewhere, petrified. I, absolu- I thought, you know, I was gonna be straightjacket, padded cells and all that stuff. I was really really scared. And you know, these people would, you know, gonna be taking away my liberty. I knew that that's what they could do. I didn't know it was a Mental Health Assessment at the time, but I knew that they were there to decide whether I was gonna go to hospital on my own will or whether I was gonna be forced to go there. You know, sometimes society can assume that young people don't know anything about the system, no, no, we are well aware or I was well aware, at the time of what was happening in that respect. 

And you know, [exhales] where that would end up. And it's just really intimidating having three people you don't know or one I did know you know, just go over your life like that in every single possible detail. And ask some really like difficult questions. Yeah.

When you were already unwell?

Yeah, when I'm psychotic. And then as well I'm sitting there with voices chirping away. That's always fun [laughs]. You know what are you meant to do? It's a really difficult, difficult moment in my life. But I guess, looking at it in a, in a positive way that was the start of my journey to where I am now. You know, that was, that was the start of me getting to where I am now. You know, and sometimes I describe as two steps forward and one step back. But at least I was going, there wasn’t, was one forward. So yeah, it's, yeah.
 

Peter hasn’t told anyone about his experiences of psychosis. He doesn’t feel he could explain his complex experience to his GP in a 10 minute appointment and anyway doesn’t want to take medicine.

Peter hasn’t told anyone about his experiences of psychosis. He doesn’t feel he could explain his complex experience to his GP in a 10 minute appointment and anyway doesn’t want to take medicine.

Age at interview: 24
Sex: Male
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In a way I think if I had more sort of courage I suppose to pursue, to go to the doctor and say "I’ve got this." In a sort of way, with self-diagnosing, you kind of think to yourself, 'do I really need that sort of validation' or 'do I need somebody to say you’ve got this', and they might not necessarily understand. Because it is complicated, talking about it, and it is complex talking about them. And doctor’s appointments are only sort of short things, well they're only usually about ten minutes long. So trying to get it - trying to talk about everything at once would kind of be hard. And with the thing of not wanting to have medication necessarily, I’m sort of averse to doing that, although if it was something that they really wanted me to do - I suppose the having the label does kind of matter, because it would kind of feel like, 'this is the issue you’ve got'. It’s official that you’ve got this.

And now you’ve got medication for it, it kind of feels like - if you’re pursuing therapy for it, it’s kind of like 'you’ve got this issue, this is what’s going to be used to treat it'. But on the other hand, I don’t know if I’d be sort of that confident with saying to people, particularly family, that I’ve gone to the doctors and they’ve said, "You’ve got psychosis." Or, "You’ve got clinical depression." Or something like that.
A few people felt that particular medical professionals did not take them seriously when they sought help as outpatients or in hospital and some felt there was a stigma against mental health service users in the NHS. Nikki, who is training to be a mental health nurse, said she experienced stigma within the NHS service because of her mental health. Tariq also felt strongly that stigma against mental health existed and felt it was more noticeable than racial discrimination. You can read more about what people said about facing stigma here.
 

When Ruby started hearing voices she was already seeing mental health services. Staff told her to “just get on with it” and her GP referred her for talking therapy. Things got worse and she ended up in hospital being assessed by a crisis team.

When Ruby started hearing voices she was already seeing mental health services. Staff told her to “just get on with it” and her GP referred her for talking therapy. Things got worse and she ended up in hospital being assessed by a crisis team.

Age at interview: 22
Sex: Female
Age at diagnosis: 19
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I was already in mental health services just about, just before I turned 19, I started being under them and yeah, it was, it was difficult because, because I, I had borderline personality disorder rather than like a typical psychotic disorder. They were kind of just like, oh it's just your BPD just get on with it. So there wasn't really any sort of support for it. Yeah, I was just kind of left to get on with it until quite distressing things started happening and then so we started to realise that Darren is- my dad was abusive.

So things started when I was younger, but yeah, things kind of reached breaking point just before I turned 19. I was still living at home at the time and I went to my GP and said, look, I can't carry on how I am. So she referred me to mental health services and then when I went home that night, my dad made me homeless because I had gone behind his back to get that help, so we've not spoken since. 

So by that stage, I guess you were seen by the adult kind of services. 

Yeah.

And how was that? You went through the GP and they referred you.

Yeah. So it took a while. I mean, I, my GP referred me to Talking Therapies, but I never got the letter. And then, a few weeks later when I was already, I was sofa surfing and I hadn't got the letter and things were getting worse. My GP then tried to refer me onto secondary mental health services but then I started ending up in general hospital. So the crisis team assessed me. And so I think, I actually got into services through the crisis team, but it, it, yeah, it was on the way there with the GP- but yes, it was the crisis team.
 

Nikki was referred to CAMHS by her GP, but was told she wasn’t “severe enough” to get their support. It was only when her school counsellor referred her again that they realised she needed help.

Nikki was referred to CAMHS by her GP, but was told she wasn’t “severe enough” to get their support. It was only when her school counsellor referred her again that they realised she needed help.

Age at interview: 19
Sex: Female
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I did a drawing and I drew myself and then all these speech bubbles around it. And I showed the school counsellor that I was seeing and I said, ''I don't know what this is, but this is what it's like in my head.'' And she said, ''You know, it seems to me like you're hearing voices and experiencing that.'' And I was just like, ''I don’t know what that is.'' And she kind of like tried to explain it a bit, but you know, I had to go back to lessons and stuff. And she referred me to the child and adolescent mental health services. I'd already been referred to them at that point, but they said that I wasn't severe enough. So she referred me again and then they assessed me and that's when I started to realise, you know, this is like this is an actual thing that people have heard of before. And, you know, these voices that I'm hearing aren't, other people can't hear them. So it's something that I'm experiencing. 

And who had referred you to the adolescent services already?

The GP. 

Okay. So you'd gone to see your GP with your dad or?

I went with my dad's girlfriend. Yeah. And she, and, you know, it was like a week or two after the traumatic event happened and —

Quite soon then?

Yeah, yeah. 'Cause like ever since that happened, I'd just, I was constantly crying. I was non-stop crying. So and they said, you know, can we do something to help and then, you know, they, they said I wasn't severe enough, so. Yeah, my school counsellor referred me again and that was, that, you know, got me help. 

So that was a different experience that second referral made a big difference. Did you see the same people again or what was the difference then?

No-one saw me the first time. They got my GP sent a letter to them and they just replied saying, ''It doesn't sound severe enough.'' But when they actually saw me they realised, yeah, we need to support her. 

Was there a big gap between those two, because you saw the GP you said about two weeks after the event. 

Yeah. It was about six months. So by that time it was all just unbearable. 

Sort of had to get really bad before they sort of recognise it. 

Yeah, yeah. 
Gaps in support from mental health services
 
When people accessed mental health services they were positive about the support they received. Luke had “pretty much nothing but good things to say about them”. Andrew X thinks he’d be dead without some of the support he’s had. But for some there had been periods when support was not available, such as when moving between services like CAMHS to EIP or from CAMHS to adult CMHT. Moving between services was often unsatisfactory with gaps when support was poor or unavailable altogether.
 
A few transferred between CAMHS and adult services when they turned 18.
 

When Nikki was 17 she was discharged from CAMHS and when she needed support six months later she was just under 18 and was told they couldn’t support her or refer her to adult services.

When Nikki was 17 she was discharged from CAMHS and when she needed support six months later she was just under 18 and was told they couldn’t support her or refer her to adult services.

Age at interview: 19
Sex: Female
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And did you have experience of child and adolescent as well as adult services?

Yeah, I have had experience with adult services, but that one isn't a great one. As, when you're 16, 17, 18 age, that is [exhales] a nightmare of an age to be in, because it's such a grey area. 'Cause when you get to 16, you're a bit like, oh, we are becoming a bit too old for the child and adolescent services, but you are not quite old enough for the adult ones and it's difficult. Like, I was discharged from child and adolescent mental health services when I was about 17. And then, about half a year later, I needed support again. And they said that they wouldn't see me because I was too close to being 18 and by the time I reached the end of the waiting list it would be too late. But then they couldn't refer me to adult services, because I was too young. So they just said, sorry.

You were just in this gap.

Yeah. I went to the GP to ask for help by the way and she said, ''You are too old here, but you are too young there, so, sorry.''

Wow. So what did you do?

Nothing. I saw a, I saw my college counsellor which was great, but it was just so, 'cause I needed a bit more specialist support. But they couldn't give me that, because I was too old and too young. 
 

Andrew X had a great “commissioning agreement” when he was with CAMHS and EIP and was supported at home. But when he turned 18 he was transferred to adult services and all the support was “gone, overnight”.

Andrew X had a great “commissioning agreement” when he was with CAMHS and EIP and was supported at home. But when he turned 18 he was transferred to adult services and all the support was “gone, overnight”.

Age at interview: 24
Sex: Male
Age at diagnosis: 14
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So CAMHS were with me for a couple of months. And that was sometime before the psychotic breakdown and sometime after. It was with me for a period of time. And then I got referred to inpatient CAMHS for a year. I got a very unique commissioning arrangement which was fantastic for me. Which meant I didn't have to stay in the, I was an inpatient, but I didn't have to stay there overnight, because they risk assessed me as being fine at home and they felt that being an inpatient would be too difficult for me and actually staying overnight. So they allowed me to stay at home, 'cause they risk assess that and they transported me to the inpatient every day. 

Quite a unique commissioning arrangement. It wouldn't happen in today’s arrangements, but it's what I needed. And so I had a really fantastic package of support there, really amazing. And, and I was also, at that time I had, I started to get early intervention and psychosis services who without whom I'd be dead. They were really really yeah. EIP were just—it was the way they worked. You know, they, they weren't, they weren't tick boxing. They were flexible with me. They helped me build my social networks back up. They were, you know, the, the therapist was down to earth. You know, it just wasn't, it was really flexible. The values of the early intervention in psychosis service were just what is needed to treat psychosis. Yeah, it's not so much oh they provide six sessions of CBT it was the way they worked that was so, so important to me. They just treated me like another human being. You know, I weren't some sort of strange weird dude, I was just on the same level as them and they treated me like that. Unfortunately, it's when I hit my 18th birthday EIP stopped, CAMHS stopped and I transferred over to adult. So all of the fantastic support that went on, they just, overnight, gone, see you later. Have fun in the real world. You've got no job. You've got no friends. Your medication isn't sorted out properly, you know, good luck. And then they wonder why I started to relapse again and started to be what I call a revolving door patient, you know, in and out of [local area’s] mental health unit via the police. Maybe if you kept a consistent level of support and tapered it off in a proper way, maybe I wouldn't have ended up in that place. Maybe you wouldn't have been spending lots of money for me in and out of mental health units. 
Some were transferred to EIP to receive more specialist support for psychosis.
 

Hannah was transferred from CAMHS, who she had been seeing for low mood, to EIP. There was a gap of about 4 months when she had no support because EIP were understaffed.

Hannah was transferred from CAMHS, who she had been seeing for low mood, to EIP. There was a gap of about 4 months when she had no support because EIP were understaffed.

Age at interview: 19
Sex: Female
Age at diagnosis: 15
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I was also supported by EIP Early Intervention Psychosis for three years. They were very helpful. 

What kind of things did they do?

So I had a care coordinator come and see me once a week and she would talk to me and listen and give me advice, that sort of thing. 

So when did they sort of come on board then? Was that a handover or I suppose they were there as soon as you got the diagnosis were they from the hospital?

Yeah. When I left hospital I was with the EIP. There was a bit of a crossover before that, before I went into hospital between CAMHS and EIP. But I found that I wasn't with either of them for like probably [rustling on mic] about four months before I went into hospital, because they're understaffed and they my care coordinator wasn't, was on annual leave or something. And they didn't have anyone to replace it. So I think that probably had an affect on me. 

That gap. So it was the care coordinator was the EIP care coordinator who should have been taking you on?

Yeah, who was seeing me and then stopped, because of some reason that I was never made aware of. 

No-one else was there to step in?

No. They didn’t have many people.
 

When Sam was “switched” from CAMHS to EIP to access more specialised staff, she was assigned a CPN (Community Psychiatric Nurse) who didn’t turn up to meetings. It was some time before Sam had a CPN she “got on” with.

When Sam was “switched” from CAMHS to EIP to access more specialised staff, she was assigned a CPN (Community Psychiatric Nurse) who didn’t turn up to meetings. It was some time before Sam had a CPN she “got on” with.

Age at interview: 18
Sex: Female
Age at diagnosis: 17
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And then, it they CAMHS sort of did some work with me on anxiety and tried to give me behavioural therapy, which didn't work. So I'd different psychiatrists and it wasn't until the last doctor I had that he said, ''It's probably leaning towards psychosis and you need to go to early to a new service because we don't really deal with that.'' I mean, we can help you up until you transfer, but we don't, they don't really deal with that, 'cause they're not, they're only for like depression, anxiety like in, up to 18 anyway. So I would have had to move over anyway. 

How long had you been sort of how long from that first time that you noticed the voice or the voices until you got that referral?

What to CAMHS?

To the EIS service or seeing an actual psychiatrist or did CAMHS have psychiatrists—

Yeah, they did have psychiatrists, but not sort of trained very much in it. They more for sort of anxiety and put me on antidepressants which don't generally do anything. —

They were focusing on the anxiety.

Yeah, rather than the other issue and when they sort of ran out of options with me like May last year, they sort of just said, ''You know, it's probably leaning towards and we need to switch you over, you know.'' Cos, you can’t, we can't basically can't, we don't have any more resources basically [laughs] to help you with that. So, —

And was it a fairly smooth transition or?

Not really the person who I was supposed to be. I got a letter first saying I'd been assigned a what they call a social worker for EIS or CPN worker. And, she didn't turn up the first time. She didn't turn up the second time. Me and my therapist waited and waited and waited in sessions. Took about six weeks for her to actually turn up when she was supposed to. Then I thought she was sort of alright, but I didn't really get on with her that much. And then when I had switched over and got onto their doctors, I didn't even like, I didn't gel with her at all. She was three hours late to everything. And said things but never did things. So, I just after about end of September time, I just said, rang up the admin and was like, I wanna move 'cause I can't—and she wasn't, because I was technically emergency on her caseload she wasn't even seeing me once a month. And I was technically under like you have to see me twice a week. And she said, I'll always see you twice a week. And she used to tell me off for ringing the 'out of hours' when she never ever replied to me anyway. So I'd message her at three saying something like, you know, I'm literally at breaking point. I need support. And she'd never reply to me till two days later. And when she got like four or five emails from 'out of hours' and even 'out of hours' were shocked that she didn't even reply. So I just said, spoke to my dad about it and stuff and switched over. Within three days got someone new. And so that's who I'm with now and she's a lot better, you know. But so but, yeah.
Being discharged 
 
Most of the people we spoke to were still receiving support from CMHT or EIP, but a few were not. Sameeha and Joseph had a single, brief (2 – 4 weeks) period of mental illness including psychosis and felt recovered. Hannah was no longer supported by EIP and saw her GP about her medication. Joe and Ruby had been discharged from adult mental health services but still wanted their help because they were still unwell. Ruby was told she was discharged because they had “run out of options”.
 

Sameeha remembers being referred to EIP after her discharge from hospital. She didn’t feel she needed further support but it was some time before they discharged her.

Sameeha remembers being referred to EIP after her discharge from hospital. She didn’t feel she needed further support but it was some time before they discharged her.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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So from then on after that, after we moved back home, I was involved with the early intervention and them and their services. 

What was that like?

To be honest, I was, I was so over everything. I was like, I don't wanna do any of that. I just wanna sit down and chill for a bit. But, no, 'cause eventually I, first of all, I started like ignoring the meetings. I was like, [whispers] I'm not gonna go. I can't be bothered. I just don't wanna deal with it. And eventually one lady, she chased me out, she like came to the door and she was like, ''I get the impression you don't wanna come, but you know, it's just, it's just about talking and making sure you are all right.'' And I was like, uh, I feel bad, all right, let me go. So I went and she, to be honest, I think it's because it was her that I, I, I went to go see her. Because she was very down to earth, she was like now I get it, you don't, you want to be treated like a human being and everyone's proved you otherwise. So I get why you don't wanna do it. And then, eventually, I met I met her a couple of times for coffee and she was like, ''Are you sure you don't wanna be involved?'' I'm like, ''I'm 100% sure.'' And like she helped me kind of just be signed off from the whole thing. But that period was quite long and I had to like explain myself so many times, kind of thing to several different doctors, told them and they had to confirm whether they felt it was alright for me to be off the list like stop being watched kind of thing, 'cause, I guess with mental illness, it's like you don't whether someone is gonna be violent or anything or whether someone has just kind of behaviours that affect other people. So they asked me whether I was, whether they whether I had any problems. Whether I kind of acted out like that. So whether I was a danger to society. It's like, no, nothing like that happened. So eventually they came to the conclusion that's fine and I could be written off and that I could just go to my GP if there was a problem.
 

EIP have “struggled” to support Lucy. She was referred to them by CMHT, but EIP are referring her back again because they’re “not sure how to help”. She feels she is being “passed on”.

EIP have “struggled” to support Lucy. She was referred to them by CMHT, but EIP are referring her back again because they’re “not sure how to help”. She feels she is being “passed on”.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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And has that been something - So now that you're with - is it just - It's just with EIP, is it?

Yeah.

Yeah. And do they sort of look after all, all elements of your experiences then?

They do. But I think they're struggling, because they are referring me back to the mental health team. Because they can't offer things for everything. And I think they're kind of feeling a bit stuck, like they're not really sure how to help.

And what are your sort of thoughts and feelings about that? About the support you need?

It does kind of feel like being passed on, over and over again. Because every couple of months I seem to change. And then there's a lot of, you know, assessments and meetings, and finding out - you know - meeting the new people, and waiting lists. And so I've recently - I got referred to the EIP team last autumn. And then this week I finally got my assessment with a psychotherapist to discuss what therapy I'd be getting And then she said, "Oh, there's not too much, of a wait on this first thing we're going to put you on - that's two months. And then once you've done that group kind of skills-based thing, then you can get - then we'll decide if you need proper therapy." But that'll be in four months time. And four months seems like quite a long time, when every day is a struggle. 

Have you got a sort of key contact person, or anyone that you feel able to talk to?

Yeah. So I've got a care coordinator and a support worker. And I don't find my care coordinator very easy to talk to, but my support worker's really good. But yeah, they're good but it will be changing when I go back to the other team, because they don't work on that team. So I'll have to have a new support worker assigned.

So it's moving from EIP to sort of mental health, adult mental health?

Yeah, it's the MHT, community mental health team.

Community mental health team.

Yeah.

And do you know any of those people from before, or?

Briefly. But I wasn't really with them for that long. So they kind of did all the assessments, and then said "You're not right for this team." So they passed me on. And that kind of feels like they didn't know what to do, and they passed me on. And now they don't know what to do, so they passed me back. And it's probably - To them, it's probably not quite - I'm sure in their meetings they don't discuss it in that way or think 'god, we don't know what to do, so we'll pass her back', but I think at my end it kind of feels like that. 
Receiving support from mental health staff
 
People talked about different staff who they had contact with, including: 
  • GPs
  • GP reception staff
  • Psychiatrists
  • Mental health nurses (also Community Psychiatric Nurse (CPN)
  • Occupational therapists
  • Psychologists
  • Care coordinators 
  • Social workers
 
Mental health (MH) staff supported people in a number of ways: prescribing medication; referring people for talking therapy; finding accommodation; and helping people to manage their day-to-day lives by getting into a routine and setting goals. People were seen by GPs and MH staff in hospital, mental health outpatient centres or at home. Chapman goes to his local mental health centre regularly for treatment and has a social worker visit him at home. Fran’s social worker helps her with her medication and “has a chat and a cup of tea and goes again”.
 

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 remember what it’s called, some therapy.

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 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.
 

The crisis team came to see Tariq every day at home, and when he needed time away from his family he could go to a respite unit.

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The crisis team came to see Tariq every day at home, and when he needed time away from his family he could go to a respite unit.

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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The people at the hospital decided that the crisis teams that are now everywhere that they come and see me in my home every single day from that day on. So every single day for a very, very long time, I can’t even remember how many months, for every single day for several months they’d come to see me at home and I’d tell them this is how I’ve been feeling. But the thing is that even though I was talking to them my condition was worsening and it was worsening. It came to a period where, you know, they couldn’t keep me in the house but what they did do on, on occasions was to put me in the respite unit which we had in the, it was a respite unit that was part of the mental health service, but was in the community and it was a place where people can go and use the services, or use some of the provision that was available such as read books and... And it was away from the outside world, it was, you know, a lot of the time the world is a busy place and people are moving around so it was somewhere where you could go and relax and just have, you know, be with other service users and just enjoy yourself and etcetera. And I spent three or four weeks there and I, I did that frequently so whenever there was tension in the house, whenever I started shouting at people, in my family, that’s when it was decided, you know, you can go there. 
For most it was the people who saw them regularly, and who they could “chat” to, who had the biggest impact. While Andrew X remembers “inspirational” and “poor” practitioners, it was people who he could “banter” with when he was unwell who made the most difference to him. People sometimes didn’t know the official title for those with support roles who helped them most, and referred to them as “carers”, “caseworkers” or “social workers”.
 

Luke compares the support he gets from his CPN, who is “brilliant” with his psychiatrist and GP.

Luke compares the support he gets from his CPN, who is “brilliant” with his psychiatrist and GP.

Age at interview: 21
Sex: Male
Age at diagnosis: 19
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I've got a carer. He's a, he’s called a community practice nurse. I call him my carer, he's brilliant.

Yeah.

That's more of a - that's more of a - Comes to my house, or we'll meet at a café, we'll have a cup of coffee - have a cup of tea at mine. We'll just chat. From a health perspective, from a - from a NHS angle, I suppose.

And I have a psychiatrist. I don't have a high, high opinion of psychiatrists. I've always thought my carer's more intelligent, even if he doesn't have twenty five letters after his name. But -

What's the experience been with the psychiatrists?

I find with the psychiatrists, they tend to have a premeditated - premeditated perceptions. You know, they don't tend to - If you think a patient is a box of stimuluses - stimuli, that's the word. And you need to open each patient's box, and you've got loads of information about them. But every patient has a different box of information. My carer, the community practice nurse, he seems to be able to open everyone's box and open everyone's bit of information and make his own judgement, his own perceptions. Whereas the psychiatrists seem to go from the books. They're like - I've always had a bad opinion, ever since that guy wrote to me and said "You don't have anything wrong with you." And it's - But they, they all have something wrong. They all, they all seem to do something wrong. They, they're - they're so inhuman. And I think in something like mental health, you need to have that human touch. 

It's what everybody says - you know - you're a human being talking to another human being, and.

Oh, yeah.

Empathy, and being there in the room [inaudible]-

Yeah. Yeah. And it's - that's it. If a friend of mine had issues with mental health, I would more than likely recommend to someone like my carer, who's going to sit there and listen to them. Whereas a psychiatrist will just try and reach a diagnosis. They'll try and get something very, I don't know, scientific.

And is it mostly the psychiatrists that have done the sort of medical prescriptions and stuff? Or do you see a GP as well, or?

Well, [sigh] they sort of - I see a GP, as well as a psychiatrist. A psychiatrist - My carer is linked into them. So the carer will talk to the psychiatrist about changing medication.

Okay.

So if my medication - I'm looking to go down from 200mg to 100. And that will sort of effectively go via my carer to the psychiatrist.

Okay. Ah, that's interesting.

Because they'll explain better. I recently had a meeting about a couple of months ago, which was psychiatrist, carer, in the same room.

Right.

And, yeah. The psychiatrist just kept talking about definitions and, blah, blah, blah, blah. And actually, all we wanted to talk about was potentially changing the quetiapine to aripiprazole.

Right.

Which is an atypical antipsychotic. Slightly different, with less side effects.

Right.

Eventually went onto that, and it didn't work. And I've gone back onto quetiapine. But that was when I achieved the drop from 400 to 200. So it was a success.

And was it easy to communicate that? That part where you were saying, "This isn't working, let’s go back again?"

I had to use my carer as a medium, yeah. And I think one of the issues is - for a lot of people - if you haven't been diagnosed with anything in your life, your GP is your point of contact.

Yeah.

You know, that's - you've always had a - everyone has a GP. And for maybe a lot of people, that is all they have. 

Yeah.

They don't have - they're not - you know - They don't have a health condition that, that, that needs anything else. So the problem is that these GPs aren't - aren't educated enough in mental health.

Sure. They're general practitioners [laugh].

They are general, by definition.

Yeah.

And, I've had - I've had - I remember trying to go to my GP for, for a bit of help when I was younger, and I got absolutely nothing.

Right.

Absolutely nothing out of the guy. 
 

Joseph had visits from a Community mental health team. They did a ‘wrap plan’ with him to get some routine into his life, but what he found most helpful was just being able to “chat” like he would to a friend.

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Joseph had visits from a Community mental health team. They did a ‘wrap plan’ with him to get some routine into his life, but what he found most helpful was just being able to “chat” like he would to a friend.

Age at interview: 22
Sex: Male
Age at diagnosis: 21
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I had a community mental health practitioner come, about once - to start with it was about once a week. And then about once a month. Or every couple of weeks. And, and that was - yeah, amazing what they did 

Okay. What sort of things?

Well, the first couple of weeks, not - it wasn't so good. As I say, it was different people. And they, they sort of helped develop a wrap plan. Which is, yeah. To be honest, I didn't - I don't remember much about it, because I didn't much find that helpful. But it was just about creating a routine for yourself, and putting in writing what you want to achieve, and stuff like that. But I found most helpful was just not really talking about what happened as such, even though we did, but just to chat, just conversation. Because I wasn't really ready to see my friends that regularly. There was a few friends that had heard what had happened and contacted me, and we met up, and that was really useful as well. But just someone, a professional, that - completely unbiased, and has seen it loads of times before, was just - yeah, incredibly useful. 
People valued professionals who were understanding, sensitive and willing to listen, able to show empathy and care and to think about the person as an individual. This included psychiatrists, social workers and CPNs but also administrative staff such as NHS phone line operators and GP receptionists. A few people said that GP reception staff had been unhelpful, unthoughtful or unkind. A GP receptionist made Becky cry in the waiting room because she was asking so many personal questions and Becky knew people were listening. 
 
Several people had encountered members of staff who didn’t seem to care. Some staff treated Andrew X like he was “just another problem case” and he couldn’t understand why they were working in mental health. Sam had a psychiatrist who took “the mick” out of her asking “so you seeing anything now… is the chair talking to you?” and telling her “it’s just anxiety”.
 

Dominic thinks people who work in mental health should be passionate about it.

Dominic thinks people who work in mental health should be passionate about it.

Age at interview: 24
Sex: Male
Age at diagnosis: 21
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But I think, there's a lot right with the way mental health is handled in England. But there's a fair bit wrong with it as well. I do believe that. 

I think the people, the people in the field need to be vetted a bit more. You can't have, [expressionless face] ‘Yeah, I'm the psychiatrist, uh hum, tell me your problems, uh hum, uh hum’. It can't, you can't have that sort of people working with mental health in my opinion. You need somebody like me, I've got fire in my belly about it. I'm passionate about mental health. I really believe in helping people with mental health and how severe, it can really change someone's life. I've got that fire in my belly about it and I think you really need to have a little bit of a flame about it to really be able to help someone properly.
 

Fran said there are “good ones, amazing ones” and some who “don’t give a damn”. She appreciated people who showed empathy and recognised she was unwell.

Fran said there are “good ones, amazing ones” and some who “don’t give a damn”. She appreciated people who showed empathy and recognised she was unwell.

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He was really nice and he was genuinely like just really worried. Like he wasn’t a bit like horrible. He was like, “Oh, my God. This is like a child almost. Like what the hell’s wrong with her?” yeah.

And over the years, did people, whether it was doctors, GPs or people at the hospital, counsellors or psychiatrists, did they talk to you about what was happening or you know?

They, but I was very hard to talk to cos I was so like hyperactive and all over the place. But, no, with members of staff in general there’s been good ones, amazing ones, and ones that are truly like, you’re like, “Why do you work in the caring profession? I’ve never met a person that cares less about other people.” So some people would really bother to sit down and try and work it out with me. And some people, they just don’t give a damn. They don’t, they actually don’t give a damn. And you’re like, “Why the hell are you doing this job?” really.

So the good ones, let’s talk first about the doctor, the GP. What would you say makes a good GP? How should a GP –

I would say, I mean cos loads of people ask me this question, more than anything just having empathy and genuine kindness. Take away all the bureaucracy and walls and professional boundaries. And I think professional boundaries should be there, otherwise it would just be over the top. But just, if like you’re ill and you’re really vulnerable, and it goes for mental illness or like a physical illness I’d say, knowing that another person cares about you. And not in some false way where they’re just paid to care about you. That it is the best thing that you can get from a professional or just from a person. And he genuinely care, like cared, my doctor. Like I don’t really go to see him much. But he was genuinely like, “All right, she needs help.” And it’s the first person that had gone alright, “She’s not just naughty and trying to prove a point. She needs help and that.” And that was good.

Did you need to hear that to, to make sense of…?

Yeah, I mean I did need help. I really, really did need help and stop being accused of being like a naughty teenager. Cos I wasn’t being one at all. I wasn’t well.
When people had a change of care coordinator, GP or therapist it could be frustrating having to retell their story again and again. Hannah would like teams to pass on sufficient information to avoid this happening. Finding someone who they got on with and who was willing to work with them, potentially for several years, could make a big difference.
 

Mental health services told Ruby “we don’t want you back” because she was self-harming. Ruby has a good care coordinator now who has worked with her before when she was diagnosed with Borderline Personality Disorder.

Mental health services told Ruby “we don’t want you back” because she was self-harming. Ruby has a good care coordinator now who has worked with her before when she was diagnosed with Borderline Personality Disorder.

Age at interview: 22
Sex: Female
Age at diagnosis: 19
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Have you had any sort of consistency of like I suppose normally you'd have a care coordinator, but I guess—

Yeah, so I didn't then, because they kept saying like, ''We don't want you back in services, services isn't like the be all and end all. You don't wanna be in services all your life.'' Which is true, I don't want to be in services all of my life. But I also don't want this to carry on for all of my life and I don't know how to get further on from this. So then the crisis team came to me and they said, ''We will work with you ‘if’ you don't hurt yourself.'' Not like in a threatening way, but like in a, if you're just gonna go and hurt yourself, despite us trying to work with you, there's nothing we can do. So I said that I would do that and they worked with me. It took them three months to get me a care coordinator. So yeah, I worked with them for three months. —

That was after all these hospital admissions?

Yeah, yeah. And now I have a care coordinator and actually this care coordinator has known me for three years, because he's the personality disorder specialist. So he runs the DBT group. I've done volunteering with him. Yeah, he knows me quite well and knows my experiences quite well. And we are now working towards a placement at [a specialist personality disorder hospital] or [alternative pronunciation] depending on who you ask how they say it, which is a specialist unit [in one of the big cities]. 
Good staff could make a huge impact and could help people regain a sense of control over their own life. Fran described her community psychiatric nurse as “one of the greatest people” in her life. She says she wouldn’t be doing the things she does now without her encouragement.
 

Tariq has a good relationship with his psychiatrist and mental health nurse. They let him set out his own care plan and treated him while he lived at home rather than sectioning him despite his own family’s concerns.

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Tariq has a good relationship with his psychiatrist and mental health nurse. They let him set out his own care plan and treated him while he lived at home rather than sectioning him despite his own family’s concerns.

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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But to be honest, you know, there’s a lot of talk that, that mental staff are very sort of, they take it to the extreme that they deliberately section people. To be honest at no point was a section considered in my case. My doctors and my nurses were some of the most compassionate, some of the most warm, some of the most kindest people that I’d ever come across because whenever my, whenever my family brought up sectioning because I, you know, for them it was a new thing that I was unwell and they were quite frightened to have me in the house and stuff, the, the, the doctors were saying no we’re not going to because we feel that we can’t, we want him to stay in the community because he’s young and we have a lot of, we have, we see a lot out there for him because, and we know that we, he has a future in front of him and we want to treat him at home. and the thing is that over time, over the last four or five, three or four years that I’ve been a patient they’ve seen me gradually recover in front of them and, and they’ve never had to section me. I’ve been supported by them and the thing is that every, in, I, I frequently work closely with my psychiatrists, with my mental health nurse and the thing is a lot of the time staff do and having spoken to other service users the staff do try to impose their own sort of care plan, you know, this is what’s going to happen, this is what you have to take. But for me it was like, you know, what do you want, what do you want us to do, how do you want to go about it? 

And they let me set out my own care plan which was amazing so on a weekly basis rather than them telling me what to do, what to take, how to take it, I’d say look I’m going to take it on this day, I’m going to take it on that day, I’m going to walk, on that day I’m going to go for this, and the thing is they accepted it so it really amazed me that the staff actually listened to what I had to say. but what I did say I sort of, I’m the sort of person that’s sort of, I can be like a politician I can make concessions, I can be like, you know, if you don’t do this then I’m not going to do this. If you don’t let me do this then I’m not going to take the medication etcetera and the thing is that they actually engaged with me in that sort of concession sort of thing. [Laughs] “Alright if you do the medication then we’ll do this for you.” and it was like, I was able to engage with them frequently and it’s, and until this very day I do, on a monthly basis I go to an outpatients’ appointment to see my psychiatrist and my mental health nurse and we still do make concessions. and like I’m the sort of person that would say, you know, if you don’t make concessions I’m walking out of here, and the thing is that I’ve never had staff not listen to me and they’ve always listened to me etcetera so I think having access to mental health services I’ve actually positively gained out of the support that I’ve received, the support mechanism, you know, they, they’ve been very understanding, whenever I couldn’t come and wouldn’t contact them they’ve been very, you know, “We understand”.
Some of the people we spoke to were over 18 when they had sought help and received support from adult services. Some had started receiving support when they were 17 or under and were assessed by CAMHS. Nikki found CAMHS staff could be “patronising”. She was upset that they had told her father “absolutely everything” and she felt she couldn’t trust them and talk about what had “actually happened” in her life (e.g. when she’d taken drugs).
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