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Psychosis (young people)

Talking and other therapies for young people experiencing psychosis

Talking therapies include one-to-one (in person, over a telephone or online) and group sessions with a person qualified in a kind of psychotherapy or counselling. Therapy could be: 
  • more structured sessions based on varying ideas of psychotherapy (such as Cognitive Behavioural Therapy – CBT)
  • less structured and provide a space to just talk about things like feelings
  • group therapies with other young people, or
  • family therapy.
Some people we spoke to had been offered talking therapies for depression, low mood and anxiety during their childhood or when they first experienced psychosis.
 

Nikki has had support from a range of services. Dialectical Behaviour Therapy helped her to “manage emotions” and this helped her manage the voices she hears. She’s found charities most helpful because the staff aren’t time constrained.

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Age at interview: 19
Sex: Female
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I've had input from school counsellors charity services like counselling and stuff. Child and adolescent mental health services, GPs, inpatient services A&E services. Specialist care services. Like basically all sorts of services. The one that I found most useful was a therapy called, Dialetical Behaviour Therapy it wasn't helpful in terms of the voices, but it was helpful in terms of managing emotions and things. And then that in turn helped me to manage the voices. But overall, I find that the thing that was most helpful to me is, it tends to be like charities and stuff, because they, you know, found out they're less time constricted and you know, it just there are people there are there 'cause they really just want to do it. It's not about having a job and getting money and stuff. But that's not to say that the people that I saw in NHS services weren't great. They, they were great, but the system in the NHS can, has a lot of flaws, yeah. 

I've had service like used charity services like, helplines and stuff like that. And I find them a lot more helpful, 'cause they're easier to access. And that's basically the main reason, yeah. 

Because you can pick up the phone and you've got someone there immediately?

Yeah. Yeah. And also I've had counselling from like different charitable services and I find they're quicker to support you and I find them less judgemental and I can't put my finger on like what else is, but I just find them a lot better and I felt a lot more comfortable with it. 
People also mentioned a range of different talking therapies including CBT, Dialectical Behaviour Therapy and counselling. 
 
  • Cognitive Behaviour Therapy (CBT) is a form of psychotherapy that gives people techniques to manage and change their response to thoughts and feelings. 
  • Dialectical Behaviour Therapy (DBT) is a form of CBT that aims to help people accept themselves, deal with intense emotions and improve skills in relating to others. 
 
CBT and DBT usually involve a short number of very structured sessions (6 to 8 typically) and can be done in groups, whereas counselling (sometimes called psychotherapy) can continue for longer and provides a space for people to talk on a one to one basis with a trained professional to explore their deeper thoughts and feelings. You can read more about different types of talking therapy on the Mind website.
 
Getting a referral
 
Talking therapies were arranged through a school or college nurse, GP, Child and Adolescent Mental Health Services, Early Intervention in Psychosis team or a charity such as Mind. Getting a referral can take some time. Some people mentioned long waiting lists and missed opportunities due to staff errors. Emily has been on a waiting list for DBT for 2 years. Ruby never received her appointment letter for talking therapy because her dad had told her to leave home and she was “sofa surfing” when it was sent out. But Becky was seen quickly once her referral was processed.
 

Becky had a good experience of starting therapy only days after a referral, but also experienced long waiting times for talking therapies. She talks about the difficulty of coping while waiting for therapy.

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Age at interview: 24
Sex: Female
Age at diagnosis: 20
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The CBT was actually really really quick. Once I got the actually the referral in, I think I saw somebody within two or three days to have the assessment. And then I got a phone call to start pretty much the week after. I mean, I think that's just how it worked at the time and I was quite lucky. But other times, I've had to wait sort of six, it might be six to eight months, I think to be picked up. —

It's a really long time. A lot happens in six to eight months. 

Yeah. I'd just moved and they said they'd send all the paperwork and then they didn't. And every time I called and again I felt like I was annoying everybody and that makes you feel really bad about yourself. And you don't need that when you're feeling really low anyway. But the waiting times can be pretty bad, to be honest. But it is what it is, I suppose. When I was really bad a couple of year's ago, everybody called me manipulative. But I knew if I started shouting and screaming I'd get seen straight away and I don't think that's the best way forward. But unfortunately sometimes you are put in that position and that's when people say, oh, it's a cry for attention and I'm like, no, it's a cry for help. I just don't know what else to do. It has got better recently. But I almost think the better you are the more people listen to you, because before you're so crazy and loud and you are screaming and not as many people are wanting to help, but that's when you actually need the help the most. 
The benefits of talking therapies
 
Talking therapies often include learning practical strategies for managing mental health as well as the opportunity to gain greater understanding of, and control over, thoughts, feelings and distressing experiences. Sometimes just having an opportunity to share feelings with somebody can be a relief. Joe learnt to think about his voices differently during CBT sessions. Now he understands the voices better and no longer sees them as the “big, scary voices appearing out of the dark”.
 

Peter went to group therapy sessions. He describes a session where they were told to accept intrusive thoughts and instead of challenging them, to “let them pass through”.

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Age at interview: 24
Sex: Male
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I think there were different sessions. So, some were based on anxiety and some would be based on depression. And I remember going for like - they called it, well they called it cognitive behavioural therapy, CBT. And it was a group-based therapy. So there would be about six or seven of us, and I can’t actually remember if it was supposed to be based on one thing or another. I remember going to like a triage session where there would be like seeing if you were a suitable candidate, if you like, for the therapy. And I remember at the triage session she said, yeah, she’s talked about me, about what I’d been through, and I might have mentioned thoughts. I think I talked a lot more about depression, and I might have mentioned thoughts and feelings as well. But in that, they sort of covered what they would call I think, I can’t remember if they called it intrusive thoughts, but they dealt with like what you can do with thoughts when they pop into your head. And I remember thinking, or I remember the big thing was that she said that when you get these kinds of thoughts it's probably more important or better for you as a person to just let them pass through a lot of the time, rather than challenge them, or attack them. But she was saying it was more to do with recognise that they are there, and accept that they are there, and then just sort of quietly let them pass through. And then think, and then try and change your thought pattern, by focusing on what’s actually - on how it might be false. Things like that, or. But not necessarily challenging it, which is what I would tend to do. So yeah, I think a lot of the time I would sit at home a lot and, when you’re sort of on your own a lot of the time, you sort of go through your thoughts, and you develop sort of delusional thoughts which you kind of - it’s sometimes difficult to kind of say they’re wrong.
 

Dominic describes how one really good CBT therapist worked intensely with him to understand the self-hatred and anger that feeds into his psychosis and give him tools to cope.

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Age at interview: 24
Sex: Male
Age at diagnosis: 21
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'Cause I really have this bad self-image and that's what fuels a lot of it. I hate myself. I don't know why I hate myself, because I'm a lovely person. Like I said, I'm a really nice guy. But I have this deep hatred for myself more than I hate anybody else in the world. And I don't know why that is. We were speaking about that for so long. And I was crying and I am blub, I’m a blubby mess at this point, and I'm like, I don't know why I'm like this. I just don't know. And he's just there and he's totally, ‘I understand. I understand what it's like to not be a fan of you. And, we can stop now’. I'm like,’ no, no, no’, I really, 'cause it was such a beneficial experience. I'd walk away from there completely drained. I would walk away from there. Get a taxi home and just, bed, ugh. But the next day, I would be, I was, I'd be revitalised, I’d be rejuvenated, I'd just be this [1 like someone had taken one of the big dumbbells I carry on my shoulders often. And, that was my moment where I was like, this hasn't got to be everything.

I haven't gotta be this, the bitch to my symptoms. I can be the, I can be the boss. And, that's when I really really started getting help and I started to look for other avenues where I can get the help and started to really make steps and he, we had a really funny moment when I almost hurt him. We were talking about one of my traumatic experiences I had as a child, which was the death of my friend. And I hadn’t really spoken about it at that point to the point, 'cause there's a lot more layers to his death than I said. But then I really spoke about it and that sadness that I was crying and it so quickly flipped into rage and I was up and I was in his face and I'm going mad and I'm punching the wall. And I'm really getting angry at him. I'm like, ''You don't understand what it's like.'' And he just looked at me and he said, ''I'm sorry.'' I started crying I don't—but after him, 'cause my sessions, we had 16 sessions after him he taught me so many really amazing coping strategies. One I use most is it's a mindful technique. And there's a lot of different ways of doing mindfulness. All of them, amazing. It really, mindfulness is the key, I think, learning which one works for you is really important too. But I think mindfulness is one of the best ways to break yourself in those crazy moments.
 

At first Luke didn’t enjoy his CBT sessions but he now looks forward to them. They help him find out more about himself.

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Age at interview: 21
Sex: Male
Age at diagnosis: 19
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I've always thought CBT was a bit rubbish. From what I've heard about it, I thought what's the point? You know, you just sit there and talk. And I was put in contact with a, someone who's training. She works as a nurse, a community practice nurse, but she's like - she's looking into further training. And I thought yeah, go on then - if I'm not paying for it then, it's on the NHS so - and it helps her, everyone's a winner. So she said "Oh, it'll be fifteen to twenty sessions." I was like "Okay." And I went along to it, and the way I felt with the first, the assessment is basically telling them your life story. And I went to the second session, and she, she sort of whipped out this piece of paper she'd drawn on. And all of my insecurities were on there. And I was like "Wow, you found that all out?" And it was really hard-hitting. And I didn't like it. And I almost didn't go back. Then I texted her, saying "Not sure if I'm coming again." And then I said - next session, I said, "Fair play, but - yeah, if you're going to be that hard-hitting, then I won't come again." But then I suppose from my experience of CBT, it's sort of like stripping you down, and working out why – the, the relationships between thoughts, and - and I speak quite highly of CBT and my therapist that does it. 

And did it - I mean, did it help, do you think?

It is helping, yeah. I'm about five, six sessions in.

Okay.

So I've got, I've got a little while to go.

Okay.

But, you know, I look forward to the sessions, in a way. I find - I've become more self-reflective through doing it, and I sort of find out more about myself. Yeah. And it get - You know, any advice you get from any health professional is going to be good. And if I get any extra advice, I'll take it, and I learn more from that person.
Group therapies provide an opportunity to talk and hear about (and learn from) the experiences of other young people. For some people we interviewed this was the most helpful because they felt less alone. However, if the person’s experiences were quite different to others attending the group, it could leave them feeling worse.
 

Lucy experienced psychosis after a head injury. She was referred by her GP for general group therapy sessions for depression and anxiety, but the other people attending had relatively mild depression.

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Age at interview: 22
Sex: Female
Age at diagnosis: 21
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So at the time, I was with like the local kind of counselling service that everyone gets referred to whenever they go to a GP for like depression and anxiety. And it was quite, it was a really bad experience for me, because it was a group of people that had fairly moderate depression. And then every week they would get a little bit better. And every week I'd say, "This isn't working for me, I'm completely different to everyone else doing this, this group. And nothing's changing, and I'm not in control of my thoughts." And everyone else kind of knew that they were. And so I was getting worse and worse. And I was getting quite angry at the system for not, for not kind of recognising that I wasn't ill with the same thing that they had. Yeah, and. I think through that time. So I stopped working in June, but I didn't quit my job until September. So I guess around that time was when I worked out that it was kind of a permanent thing. And I started self-harming quite badly over the summer. To a point that I couldn't go out of the house unless I knew I had like a blade on me somewhere. Yeah. So I think that, that waiting time between asking for help and then help coming was the worst bit, really.
Factors affecting the experience of talking therapy
 
The timing of the therapy, and level of expertise of the therapist was important to people we spoke to. Some who had therapy very early on in their experience of psychosis said they didn’t benefit from it. Counselling that young people received through their school in particular tended not to be specialised enough. Andrew X and Tariq both had counselling in school after bullying led to a breakdown. Andrew X felt he needed more than just talking and would have preferred to have been referred for help from a psychiatrist. Tariq found the techniques that the counsellor suggested to help him deal with his anxiety, such as mindful breathing, didn’t help and he began to feel suicidal. 
 
Well-meaning support from people in the community who did not have the training or skill to help with psychosis was also sometimes unhelpful. Lucy’s church assigned her a pastoral care worker who was a trained counsellor, but who didn’t have the skill to help with psychosis, and she didn’t feel the sessions helped her. 
 
But those who had a lot of experience of psychosis could find talking therapies helped them to get some better understanding of why it was happening, and this was helpful.
 

Becky has found CBT really helpful but didn’t find other talking therapies she had previously had worked as well. She thinks maybe there is a “time and a place” for the right therapy.

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Age at interview: 24
Sex: Female
Age at diagnosis: 20
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Yeah, I think it's been four or five years, I think. And it's only really, I started doing CBT about four months ago. And that's really really helped. I've got a lot more understanding of what's happened to me and all that sort of stuff and being able to deal with a lot more things and see it from a completely different point of view. So that's, that's really really helped. Before then, I probably wouldn't have been able to even start to explain myself, so.

Do you think that you could have, would that have been something that might have helped you earlier on or do you think there is just a time for everything and—

Probably a bit of both. The understanding really would have helped. And like, things like because I can remember and I sort of wanted those answers and people not being able to really give them to me. At the time, I thought that would've helped. But I'm not sure it would have anyway. I think there is sort of a time and a place and maybe I'm in that place now to start understanding and it might have helped before, but I've done quite a few different therapies and talking therapies, counselling and none of them have had that sort of moment for me when everything changed and I understood. So, I don't know if it would've helped or maybe this is the right time or maybe just the right therapy for me. 
Finding the right therapist was very important. A few people mentioned the difference between therapists who were following a “process” and those who tailored the sessions to the individual. For Andrew X the best therapists just allowed him to talk and used CBT to help with what came up. Finding a therapist who seemed to genuinely care about them was also important for some people and this could take time.
 

Dominic had two therapists who he didn’t get on with. Eventually he was referred to a psychologist who “invested” in his story.

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Age at interview: 24
Sex: Male
Age at diagnosis: 21
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I went through two therapists before I found one I actually could work with. One of them laughed at me and that was a very bad move. I ended up punching the wall next to her and really hard and getting angry with her, so I had to leave the room. I had to go to the next therapist who, he wasn't a passionate person. And, I think you need to have that passion if you're going to be working with mental health people. I think you need to have that, that want to help them rather than I'm getting paid for this. I'm gonna be taking, you know, that, that sort of stuff. He was very yes, and I hate that. I really hate that. And I just couldn't relate to him at all. And that was the second, third, second therapist. And that's another week that went by that I wasn’t getting help. I was trying to Google my symptoms and trying to get any idea of what's happening and it made me ten times worse than I was. And then I found this lovely lady, [name] who was just amazing. She listened. She could really, could really see that she cared about what I was saying. Rather than just sort of felt like the rest of them weren't believing what I was saying. It felt like I was sort of just talking for the fun of it. [The lady] really listened to me and there was two people at the first meeting, [a man] and [this lady] and they both really cared. 

The identifiable point in which I started gaining some sort of control was my first CBT session. My first CBT session was three years ago now or two years ago. The guy that ran it was spectacular. He was just one of the most caring people that I've ever met. He really really invested himself into me. It wasn't him just there doing the job. He was really really invested in my story. And I related to that so much. I really believed what he was saying, rather than, a lot of the times when you're going through all that craziness. It's very easy to take something a nurse, a mental health nurse says as okay, she's reading off the script. And it's very hard to take some of that seriously. But he was so different. He was everything he was saying was tailored to me. It wasn't a generic statement, it was tailored to what I was saying and what I was told.

So that was one to one. 

One to one, yeah, yeah. And, he was just amazing. He was, he was terrifying at the same time, because he, although he cared a lot about me that meant he had to do the hard part which was breaking down my symptoms and really taking apart everything that I was going through. He started off with the anger I feel and we went into it and we started speaking about my childhood and what parts of my childhood I'm still guilty about and whether that guilt has something to do with why I'm so angry now. And we really broke it down that it was some of the most intense times of my whole experience of schizophrenia because, it's one thing experiencing it and there's one thing trying to, okay, you're talking to me and I'm trying to move on. And there's another thing really speaking about the depths of it.
Some of the people we spoke to didn’t find talking therapies helped them or didn’t want to try it. A few felt that counselling always focused on the negative and could make things worse, while others were worried it would bring up unpleasant memories. Chapman, who is seeking asylum in the UK, was offered counselling but turned it down because he was concerned it might “bring back stuff” from his past in Zimbabwe which he wanted to forget. Andrew X thinks only being offered 6 sessions of CBT can be damaging because it opens a “Pandora's box” but doesn’t allow time to deal with things properly. Fran doesn’t like counselling and thinks therapists “invent problems” which aren’t there. However, she has found books on CBT helpful in giving her practical tools (see below).
 

Hannah saw a therapist for a year for anxiety and low mood. She said they focused on her childhood whereas she didn’t think there was anything problematic in her past.

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Age at interview: 19
Sex: Female
Age at diagnosis: 15
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With CAMHS, yeah, I did have counselling. But I didn't find it helpful. I found that their method was to find a cause like pinpoint some sort of relationship that you have that might be going wrong that they'll make me think that there was a problem when there wasn't one. So that caused some issues. Yeah, I find that sort of therapy isn't very useful the one which targets issues in the past. I think it's quite a common thing that people think if you have mental health issues that you must have had some sort of tragic experience in your life. But that just wasn't the case for me. So I think it might be helpful for other people to know that. But you don't need to experience something really bad for that to happen or like you don't need to be in a really bad situation in your life for it to happen, it just happens. 

And did you feel you were able to communicate that back to the counsellors, sort of thing?

Yeah, hopefully. 

How long did they see you for?

About a year and a half or something. 

It's quite a long time then. 

Yeah. I tried to give them a good shot. 

So you learned that actually there wasn't anything!

No.

How did that sort of finish? Did they say, you know, it's fine, you're obviously not getting anything out of this.

Yeah, I just, I told them that I wasn't finding it useful. It wasn't helping me. I also had CBT therapy and which I didn't find very helpful either. I don't really like the whole drawing of things and like hot cross bun method and all this sort of stuff.

What's that? I don't know that one?

I think it's where they connect your thoughts and your feelings and altogether and what and the experiences that you have and how you react to them and how you should react to them differently. 
People sometimes found other ways to tell their story or work through things: such as art or dance therapy, journal writing, writing poetry or using techniques such as mindfulness, and a few had posted blogs or video diaries online. Many also engaged in peer support work, often as volunteers, and found talking to others with similar experiences helped. Some talked about the benefits of talking with friends and family or other mental health workers such as their carer. Luke finds his Social worker is able to understand him as a person and prefers talking to him than to his psychiatrist. Dominic has a great relationship with staff at his local Mind centre and can call there and just have a “rant” if something is on his mind. 
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