Psychosis (young people)

Many people had only received help when their psychosis had reached crisis point – i.e. they felt unable to cope or control things. This could be because they had not sought help earlier, or because although they had tried to access help, adequate support was not given. Some had already been receiving support for low mood, anxiety or depression when they first experienced psychosis and felt that it was only when they had reached crisis point that proper help for their psychosis was offered. 

 

Getting help in a crisis typically involved some or all of the following services:

Most people we spoke to had contacted the emergency services in relation to their psychosis at some point. Police or paramedics could be called on by the young person in need of help, or by others. Becky had been arrested for breach of the peace, and for her own safety. Crisis teams, within Mental Health Services, can also work with emergency services and sometimes take a person to A&E, or offer them community support, depending on the situation. People often had good things to say about those who worked for the emergency services and spoke about the importance of staff being “patient” and “human”.

Andrew X remembers the operator on a 999 call sensing that he was unwell and asking him about his favourite music.

Andrew X remembers the operator on a 999 call sensing that he was unwell and asking him about his favourite music.

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Age at interview: 24

Sex: Male

Age at diagnosis: 14

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So, I was calling from a phone box, those ancient things that no-one uses any more.
And I had a, 'cause I was distressed. And I called 999 and the emergency operator like could obviously tell I was distressed, 'cause I was rambling and I was, you know, voices were telling me what to say. He just asked me what music I was in, into. I know that sounds like such a trivial, simple question, but actually that's the first time someone's asked me something human. He weren't like, oh, so you're how am really are you or you know, you know, are you really gonna take your own life? It was just like, you know, this dude's obviously unwell let's try and build a bit of rapport with him. Let's just ask him something that I'd ask anyone, you know. What music do you like? You know, and that helped me snap out of what I was going through and just, you know, when, when the police officer approached me they weren't like judging me. You know, they just like obviously this guy is unwell, you know, again, it's just like compassion. That bit of compassion went so, such a long way for me, because again, it just made me realise that no, actually, I'm a human being and I deserve to be treated like a human being, not like a bit of cattle. So, yeah. 

In the past when Dominic has felt unwell or worried that he might hurt someone the police have come to collect him or walk him home. He’s come across

In the past when Dominic has felt unwell or worried that he might hurt someone the police have come to collect him or walk him home. He’s come across

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Age at interview: 24

Sex: Male

Age at diagnosis: 21

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You get a few, there's a few police, police officers—I've dealt with ones that have been amazing. I've dealt with ones that have put all of their officer duties aside and been a person with me, which I can't thank that person enough for. But, I've had a fair few which they don't see a broken man with mental health condition. They see the big image that I am and they think I'm kinda be a big man trying to intimidate and they take it as a threat. Not my intention, of course. And instead of helping me with what I'm going through they’all, ‘no, you need to go in the cell, mate. You're are too angry right now mate. Too aggressive. 

It doesn't matter what you're going through, go to your cell’ and you don't need that. You need someone to just go, what's going on with you, mate. You know, I've, I'm lucky because I'm a very confident person in some ways. If I'm in the middle of the town and I could feel my anger starting or I can feel like I'm gonna have a panic attack, any time I'm vulnerable, any time it's fight or flight it's always fight with me. I don't think I even know what the word flight means. So any time that I feel like there's gonna be that vulnerability, I, I ring up the police or ring up the emergency services and I'll say, ‘I'm gonna hurt someone if I don't get help. Can an officer just come and see me and come and walk me home or something, 'cause I'm gonna hurt someone’. And they have done that before. 

Ruby’s experience of being detained by police has been mostly positive particularly when they have spoken in a “gentle tone” and not been aggressive. She thinks it’s better if police avoid using physical restraint as that can be distressing.

Ruby’s experience of being detained by police has been mostly positive particularly when they have spoken in a “gentle tone” and not been aggressive. She thinks it’s better if police avoid using physical restraint as that can be distressing.

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Age at interview: 22

Sex: Female

Age at diagnosis: 19

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Yeah. I mean, my experiences have mostly been positive. I've only had one negative experience. And the things that they generally have done has been very helpful. The things that have helped have been things like talking in a gentle tone, not an aggressive tone. Trying to get in front of my eye-line, because I tend to not, once somebody's in my eye-line, if they're speaking to me, it tends to get through a bit better. Yeah, like don't, it's a lot better for both the police and the person if you can talk them round to doing what you want them to do rather than restraining them 'cause that's very distressing. Yeah and that that sometimes it's more pleasant for the person, even though the rules are that an ambulance then has to come to transport you anywhere, which can take hours, because although you're sectioned, you are not a priority. Because physically, generally, you're fine. So quite a few times that I've been sectioned, the police have got permission from their superiors to just take me in their car, as long as I'm happy with that. And that definitely helps. It's much better to just go to the place of safety in a car when you're not surrounded by the things that have been tempting you. That you're less likely to try and run away, all of those sorts of things. And you're not stood out in the cold for hours, waiting for an ambulance to come just to take you somewhere when there's already transport there. 

Joseph felt a “big weight off” when paramedics arrived to take him to hospital after he collapsed at the start of his psychotic experience.

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Joseph felt a “big weight off” when paramedics arrived to take him to hospital after he collapsed at the start of his psychotic experience.

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Age at interview: 22

Sex: Male

Age at diagnosis: 21

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I'd say then when they turned up, it was kind of like this big weight off my shoulder. I'd finally been taken care of. Not that I was particularly - I wasn't unhappy as a chef, but it was just - it is a very intense lifestyle. And deep down it wasn't something I wanted to do the rest of my life. So it kind of felt like I'd just been handed over. Not to say that any of the symptoms left, but I definitely got that sense of 'okay, I'm - whatever happens [laugh] - I'm just somewhat in safe hands now'.

And then they - Yeah, then they - They definitely clocked it was a mental health thing, I reckon. Because I do roughly remember the conversation. And they were amazing. They were just sort of speaking about - asking questions, and –

The paramedics who came?

Yeah. And they - Before sort of I got taken to the hospital, they just asked me lots of questions, and being very patient with me. And I remember almost feeling in a bit of a video game. So again, it's hard to describe. But in some video games, say you're talking to a character, if you don't respond to what they've said to you straight away, they just sort of stand there - the animated person stands there and just nods their head, and waits for your response for as long as possible, until you respond.

Okay.

Just because it's a video game.

Yeah, yeah.

And that's kind of how I felt I was in that situation. Because they were so patient. They were just - Just long periods of time before I answered. It was almost like I was testing it. Because I was just waiting. And then I'd say something.

What will they do? 

Taken into the ambulance. Then I was, yeah, driven through the rain. Getting my blood pressure done all- whilst I was in the ambulance. Taking down the information. Still feeling a bit like it was a video game. Almost like, yeah. I suppose the whole thing about the video game, it's also like a dream-like state you're in. So, nothing feels particularly real. It's almost like you could do anything - Not that I did, that I'm aware of, but you could just slap someone, and it wouldn't have a great effect, because it's - they're not real. That's not to say I didn't have an emotional connection with people still, it's just - yeah. That kind of disconnection.

But there could also be misunderstandings which could make people reluctant to call out of hours services for help. After she had been discharged from CAMHS, Sam heard voices telling her to hurt others and called 111 for help. She then went to A&E but the 111 operator informed the police who, concerned she might hurt someone, nearly forced entry to her house (luckily a neighbour said she was out). If out of hours had known more about her history they would have known that she has never acted on the voices she hears. 

 

Going to A & E
 

Psychosis can be a very distressing and often frightening experience and can get worse very quickly or with little warning. Some people said they heard “bullying” voices telling them they were “useless” or should harm themselves or that they were in danger and should harm others. A few of the people we spoke to had delusions and paranoia or false memories that made them act out of character, which other people could find upsetting. 

 

In some situations friends and family had brought the young person to A&E when they were acting out of character, but at other times the young person had gone there themselves because they were concerned for their own safety: Nikki, for example, had gone to A&E because she felt unable to keep herself safe. When Sam was waiting to be transferred from CAMHS to Early Intervention Services  there was no “out of hours” support for her because of a gap in services and she found herself regularly going to A&E. 

 

Some people had to wait a long time at A&E to be seen, or felt they were not taken seriously. Lucy, Ruby and Nikki who experienced depression, low mood and severe anxiety attended A&E several times after having taken an overdose or because they were self-harming but had been sent home. Nikki said she had been to A&E 20 times, desperate for help, before she was eventually admitted. 

 

Being in A&E and experiencing psychosis could be a strange experience. When Luke was having delusions and hadn’t slept for 72 hours his dad took him to A&E. He said he was “flying high” and was going around the beds putting his hands on people’s heads and saying, “you are healed”.

Ruby has had bad experience of going to A&E after self-harming or attempting suicide.

Ruby has had bad experience of going to A&E after self-harming or attempting suicide.

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Age at interview: 22

Sex: Female

Age at diagnosis: 19

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I mean, the only negative experiences I've had tend to be more going into A&E and not being admitted. Yeah, I've had some, some strange advice. I've had things like you, ‘if you had a boyfriend you would feel a lot better’. ‘If you ate more ham then you would feel a lot better, because it's very tasty’. That was an interesting one. I had one doctor tell me that whisky would help. Yeah, I'd been refused stitches and staples. I've been, because if I'm gonna do it again, what's the point. I've been refused anaesthetic for procedures, because I clearly like pain. I've been told why do I bother coming to A&E, I clearly like having scars. So why not just have them as they are. 

It's a quite unkind—

Yeah, yeah. And I mean I've had positive experiences as well and there are several like all of the A&E staff know me now. But there are a few that will every time they will apologise for their colleagues who have been so not understanding. 

Lucy talks about going to hospital after taking an overdose.

Lucy talks about going to hospital after taking an overdose.

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Age at interview: 22

Sex: Female

Age at diagnosis: 21

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The last time I was in hospital. I was in A&E two weeks ago, from an overdose. And the whole run-up for the last two weeks before that, I was saying I need to be in hospital. I think four times, the day before the overdose, I said I needed to be in hospital. And they kept saying "Oh, well maybe we'll wait until, until Monday. And maybe we'll talk to a doctor then and see what they think, and about whether it'd be good for you." And then I was, [laugh] I was in hospital because I ended up in A&E from trying to kill myself. 

And how did you get there?

A friend took me. So I was - I was sick at home and then kind of had a bit of a freak out, and I got really angry at my body for not doing what I was telling it to do. And then my friend that I called kind of yelling and swearing, and really upset too, called the crisis team. Because I'd given a couple of friends a few important phone numbers. And then the crisis team called and said "We're going to call you an ambulance, unless you get someone else to take you." And I said, "It's fine, I'll get - somebody will take me." So a friend came and took me to A&E. 

Can you tell us a little bit about what that was like, going to A&E at that crisis point? So you weren't having a psychotic experience then?

Not at that time, no. I think A&E can be quite a frustrating place. It's quite scary as well, when you know that you've kind of put yourself there. Because I think I always - Once you get there, they are really helpful and they're nice, and they don't kind of ask - you know, they don't kind of go, "Well, what do you think you were doing, making yourself end up in hospital," or anything. They're all very professional. But I think on the way there, I'm always thinking you know, they've just going to hate me, like I'm just wasting everyone's money and time, and resources of a hospital, by doing this. And it's happened - I've overdosed eight times. But only four of those times I've gone to hospital. But, yeah. I think the actual experience isn't as bad as, as the thinking about it beforehand. 

And does it - Would you say that the taking an overdose - those times where it happened - did the psychosis play any part in that, or?

Yeah. All of the times, except for last time, which was two weeks - last week. It was the voice in my head that was kind of just saying "Just take an overdose", all the time. And, but I took an overdose about a month ago, and it was just because I - I just said, I got to hospital and I was like - I just said, "I'm trying to shut my head up, like I'm not - I didn't try and do this for any reason other than to get the voice to stop telling me to kill myself." Because I took like small number of tablets that I knew maybe weren't good for me, but weren't going to kill me, just because I thought well if I - if I do something that the voice is telling me to do, the voice will stop, and I'll just be able to rest. And the problem is, that it does kind of work. So, giving in to whatever the voice tell you does always stop it. Only for a while. Like it'll always come back again. But I think in hospital they were quite worried, they said "Well, what's going to prevent you from doing it again? Because obviously it's worked for you this time, so what's the deterrent, really?" It's like the only definite way I've found just to kind of quiet down the instructions in my head.

Being assessed in a crisis
 

Where people had reached a crisis point during their first experience of psychosis there could be a difficult period of assessment where medical professionals sought to understand what was happening and to decide what treatment and support was appropriate. When Luke first saw a psychiatrist he felt that the process was just a ‘tick box’ exercise and that nothing would come of the assessment.

Andrew X had a “breakdown” before he received a proper assessment. He describes how “scary” it was being assessed under the Mental Health Act when he was having his first psychotic experience.

Andrew X had a “breakdown” before he received a proper assessment. He describes how “scary” it was being assessed under the Mental Health Act when he was having his first psychotic experience.

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Age at interview: 24

Sex: Male

Age at diagnosis: 14

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I had what I call a psychotic breakdown. I'm not sure if that's the official terminology, but that's how I see it. So I had a particularly really stressful and horrible day. And I decided that, my voices told me that God, that Satan was gonna come and kill me and send me to hell, which is not really the best of situations to be in, as you can imagine. So I jumped out the window vaulted over a fence and I ran Forest Gump style [laughs] I just ran, 'cause I wanted to get away and I was told to get away and I did, I got away. Until the police came and picked me up [laughs] which is, you know, fantastic. The police brought me back and then I had a Mental Health Act assessment. Mental Health Assessments, you know, people think supervision is scary or things like that, but Mental Health Assessments, Mental Health Act Assessments, particularly when you're 14, when you are so young. You don't know what they are. But they are deciding whether or not you are gonna go to this, what I saw as this scary place where people would be in padded cells and have straightjackets and be injected with medication. That was really tough for me, really tough. And you know, sitting down with two consultant psychiatrists and the social worker talking about you. 

Talking about whether your liberty should be taken away. That's pretty heavy stuff. So fortunately I wasn't sectioned. But they do this—I call it the quasi section, because it's not actually sectioning. What it is, ‘[name], you have to do what we say or we'll section you under the Mental Health Act’. So that's what I call the quasi section. And in a way you have less rights that way than you do if you actually got sectioned properly. I think it's something that actually healthcare professionals need to be really cognoscente of, because you know, you need to be able to give people the space to—if someone needs to be sectioned, they need to be sectioned, right, they don't just suddenly because they disagree with you need to be sectioned. You need to be either section them under the Mental Health Act or they are not sectioned and they are free to choose. It's a personal bug bear. I mean it happens a lot and particularly in CAMHS, because a lot of the time you're given these choices, do what we say or we'll section you. That shouldn't be as a threat. It's not- the legal mechanisms are not there for it to be used as a threat. In my life, if I'm a danger to myself or others you need to section me. If I'm not, I'm not sectionable, welcome me. Anyway, so I had that Mental Health Act assessment.

Sameeha’s flat mate was concerned when Sameeha left the house during the night and she was taken to A&E. She describes still being delusional and running away and feeling “imprisoned”.

Sameeha’s flat mate was concerned when Sameeha left the house during the night and she was taken to A&E. She describes still being delusional and running away and feeling “imprisoned”.

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Age at interview: 22

Sex: Female

Age at diagnosis: 21

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And I had walked out with a bag and I had, I'd been walking around for hours and hours on end. And I think during that time she had called her mum. And I had finally, imag—eventually gotten back to my house, but obviously I think I'd, I think I'd lost the key, eventually on the way, wherever I was going. And I couldn't get back in. So my friend was like, calling her mum, she didn't know what to do. Eventually her mum came. And took me to the hospital and then, and then they left. So from there, I was left in the A&E. And 'cause in that state I was still kind of—I didn't want to be there. I was feeling very like closed in, trapped, imprisoned. 

So you just were left there in A&E on your own?

Yeah. 

It was during the night still?

No, that was, it was like morning time by then. So it was like 7, 8 probably. And when I was they had left me there. I had, I was there for a little bit. One of the nurses had asked me to take a urine test. But because I was feeling so imprisoned, I just went into the toilet and I was like, kind, kind of run, gonna run out, gonna get out, gonna escape. And so, eventually I got out and went to the house and just stayed there. And eventually and at that time period the police came. 'Cause my mum, there was obviously some dealings in the background. The police came, took me to the hospital and from then on it was just a long, long- I feel I was at three different hospitals overall, kind of thing. A long transition. But there was never once any a case was made, this is what’s happening. Your, your, you're going through a psychosis right now. We don't know what medication you need. We are just trying to find out what's going on. When I was in A&E the second time and the police took me there, I remember like a lot of people trying to talk to me and a lot of people trying to ask me questions and a lot of people trying to like get, understand what's going on. But, for me, it I, I found it extremely, I couldn't answer. I didn't I myself didn't know what was going on, because I thought whatever delusional crazy thoughts were going on at the moment of time.