Getting help in the early stages of psychosis

You can read here about the help people got from friends and family and about what it was like telling professionals for the first time in the early stages of psychosis.

Getting help during the first experience

It was often other people who recognised that a young person was having unusual experiences or was struggling. The first experience often occurred when young people were having a difficult time in their lives. It could take a while to come to terms with what was happening and some, like Tariq, said they were ‘too scared’ to tell others. People described worrying about what others would think of them and struggling to make sense of what they were experiencing and why.

Some young people felt that more discussion and information about mental health in schools would have helped them to consider seeking help earlier. Dominic and Hannah didn’t want to accept that they were having hallucinations initially. Dominic ‘convinced’ himself that everyone heard them and it was a normal thing. He was hearing voices for 2 years before he was diagnosed and said, ‘I think if I had any sort of idea of what it meant, what a voice was, that would have helped a lot.’

Andrew X received help for his psychosis after his psychotic breakdown. However, he didn’st seek help beforehand because no-one talks about it and he felt outcaste.

Age at interview 24

Gender Male

Age at diagnosis 14

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Did you look outside for help? What did you think?

I didn’t at the time. But I think because I was a young person and because I was experiencing psychosis, I meet thresholds to get help because, you know, those experiences were quite acute. I was very fortunate I think to get the level of help that I did. So, I haven’t, when I was a young person, I didn’t have trouble accessing help when I met the threshold, if that makes sense. But I didn’t know I was unwell. If you don’t know you’re unwell then how do you know—if what you’re experiencing is something that you don’t understand. It’s something that no-one talks about. It’s something that you can’t make sense of and something that makes you feel like you’re an outcast, you are not gonna reach out to people for help. You know, whereas again I come back to this, you know, if schools maybe taught mental health and spoke about it more then maybe I would have felt more comfortable. I think it’s perfectly normal for young people not to want to reach out, you know, because you don’t know what it is. What is this experience?

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A friend of Sameeha’s was kicked out of school when she was experiencing mental health difficulties. Sameeha talks about why it’s important to take people seriously when they say they are struggling.

Age at interview 22

Gender Female

Age at diagnosis 21

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And the school had still kicked her out. And they were just like, ”Oh but the, the resources were available to you.’ It’s like, ”You’re not, you’re not completely be understandable then, are you. You are not completely being open to what you are saying that you stand by and you believe in because you’re saying that you can only be ill from a certain standpoint.

You can only be ill if you like write down and go to the doctors and do the right things at the right time. People don’t work like that. People, it takes a while for people to figure out what they’re going through. To figure out what they’re feeling. To figure out, ’cause there’s constant stimuli in this world and people constantly trying to stay busy. But, when they actually recognise that they’re suffering and then people are telling them, no you’re not. It, of course they are gonna go inwards, of course they are not gonna want to talk. Of course they are not gonna wanna connect or whatever resources you have available. They are gonna just wanna stay silent and stay within themselves. And, for example, this is something similar that happened to me. I, I was like, no, no-one’s gonna understand and no-one’s not going to, everyone is going to call me lazy. Everyone’s gonna be like no, you just don’t wanna do your work. You just don’t wanna do your essays. You just don’t wanna do this. And I’m just like, no, it’s how I feel at this moment and nothing you can say can change that. Nothing you can even if you want to kick me out or if you want to do this, nothing you can write down or choose or, ’cause the whole precedent with the whole uni thing is, nothing you can say, that, I feel the way I feel. I’m standing by it. I’m no longer feeling shame or anything for it, because that’s what a lot of people they feel the shame, they feel the guilt. That contributes to the whole bad feeling. So, it’s just allow people. If they’re saying and they, they seem genuine and they seem honest about whatever situation they’re going through, whether it’s mental or abuse or anything. Just take their word for it and don’t say they have to go through a certain channel for it to be real for it to be genuine, because it’s the worst kind of feeling to go through where you feel, feel like you’re not going, not being taken seriously simply because you didn’t do it the right way, whereas what is the right way there is none.

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Tariq thinks more should be done about the negative media image of mental health. Education for young children and adults is important to prevent discrimination.

Age at interview 21

Gender Male

Age at diagnosis 18

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I think at a young age you should start teaching, we should start teaching children about these things when they’sre most perceptive, when they’sre able to take, grasp these ideas and views. But I think when we start teaching them when they’sre thirteen, fourteen it’s, it’s a very bad age because at that time they’sre already brainwashed to believe all mental health patients are all crazy, that they all go out and kill people, they all murder people. It’s not how all people, the vast majority of them are law abiding, and I think that recently because I actually gave a talk in the House of Commons on the Mental Health Bill and one politician I think in the press he said, 200 people, or something, 400 people in this country are murdered by mental health patients each year. But then how many people are murdered by non-mental health patients, you know, there are more murders, rapes, kidnaps, assaults, committed by non-mental health patients than mental health patients but why don’st you have a law saying that, you know, put all these people in prison. Well, why not? That means we would put half the population of this country into prison if we had to because when you go out on a Friday and Saturday night a lot of people are violent after drinking a lot etcetera, are we going to put them all in jail? But you seem to want to put people that experience mental health difficulties in jail very quickly so why these double standards? Why? And I think that a lot of these Lords and MPs are brainwashed by what the media tell them. Mental health patients, they’sre going to come and get you, they’sre going to, they’sre out to get the lot of us.

You know, this, this indoctrination of telling people that we’sre all bad, we’sre all negative and that you can’st mix people with people that experience mental health difficulties only contributes to this culture of ignorance and negative, the negative perception people have towards mental health patients and it, and it’s disgraceful and I think that the media can do so much to challenge the stigma but they’sre not being paid billions of pounds to do that. But on the other side they are being paid to generate this negativity and it’s very sad because it puts people like me in a position where we’sre discriminated against. And adding onto that I think that people like me have suffered more, you know, people say that race discrimination is the worst in this country. I think discrimination against mental health patients are far worse but nobody will recognise that because nobody knows about it.

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Fran, who has worked in the service user movement, thinks attitudes towards mental health have improved over the last ten years and that people are more accepting than they used to be.

Help from Family and Friends

People were often apprehensive about telling family and friends about the unusual experiences they were having. Some worried about what others would think of them and this was particularly difficult for those who were still at school. People spoke about losing friendships, but also about how much they valued those friends who stayed in touch and supported them.

Some people we spoke to felt there was a stigma surrounding mental health which made it difficult to talk openly about their experiences. A few people we spoke to had mixed or overseas cultural heritage and felt there were cultural taboos within their community that made it harder for them to talk about their mental health. Chapman, who was brought up in Zimbabwe never spoke about unusual experiences in his childhood to anyone because he was worried he would be ‘shunned’. Sameeha, who has mixed British African ethnicity, remembers some people looking at her in a certain way when she was experiencing her psychosis, assuming she was ‘possessed’ or on ‘serious drugs’.

Tariq talks about the stigma against mental illness in the British South Asian community and says it is common in other BAME (Black, Asian, and Minority Ethnic) communities.

Age at interview 21

Gender Male

Age at diagnosis 18

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Okay and so what, what do you think would happen if your community found out, can you say a bit more about that?

Well people would look at you in a negative way, probably ridicule you behind your back, probably make, you know, say things that would be very hurtful if you were there. ridicule you and, and it would be frowned upon, people would think oh my God and it would be spread across relatives and people would be like, He’s got mental health difficulties. And then it may be bad for my own future, for, you know, when I get married and etcetera because, you know, people will say he’s got mental health difficulties, would you want to marry into a family that has someone that has a mental health difficulty etcetera. So I think those are the repercussions of if I came out openly about it.

Do you think that is something that’s particular to, to your community or do you think?

I think it’s particular to certain other communities, BME communities because I think in certain African groups it’s a very sensitive issue as well. in certain, you know, in Indian culture it is regarded, in Bengali culture it is regarded as very sensitive, it’s frowned upon, in Pakistani culture, many different cultures it’s frowned upon. And this is not only talking from me just talking off the top of my head this is from extensive research that has been conducted by universities, that has been conducted by mental health charities, by organisations, by even organisations that tailor their service to ethnic, you know, Indian communities because there are Indian organisations, Indian led organisations that provide services to their own community, mental health services so they have also conducted research and they have found that there is a lot of stigma and a lot, among certain communities in their own. But I think that as people, as an increasing number of people enter the system it will become increasingly accepted by society and that’s when it may be but I don’st think that will be in my lifetime. I think that will take many, many years because I think there is a lot of stigma about still and cultural sensitivity has a lot of influence on people and that’s, I think that, it will take many, many years to defeat.

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Telling family could be particularly difficult for some people, especially when they weren’t sure themselves what was happening to them. When the young person was studying or living away from home, family didn’t always have regular contact. When Joe started university he was making an effort to be independent and was ‘quite cut off’ from his family during his first year.

During her first experience Becky’s parents distanced themselves a bit and Becky thinks now she was probably pushing people away.

Age at interview 24

Gender Female

Age at diagnosis 20

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Early on, there was just, my boyfriend at the time was trying to help but because nobody knew what was going on, it was very hard, because I was lashing out at the people that were trying to help. My parents, I think they just, because it was so out of the blue for them, they didn’t know what was going on and they sort of distanced themselves a bit just because they didn’t know what to do for the best. And, obviously, I was probably pushing a lot of people away ’cause I thought people aren’t gonna accept me like this. From a medical point of view there was quite a few sort of assessments where they tried various antidepressants and assessments to realise that something wasn’t right, but it took a long long time to get any sort of diagnosis. I think I was, I’d been in hospital the first two times a month each and it was, I think it was then that I had the diagnosis and I suppose medication and the help has been sort of steady, but it’s not easy to get anything from anyone, really, ’cause people just don’t know what to do and push you away.

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But for some people we spoke to it was family and friends who first realised something was wrong and offered support. Barry’s mother took him to hospital during his first psychotic experience and did ‘all the talking’ because he wasn’t able to focus. Andrew Z’s parents ‘noticed something was a bit odd’ and booked him an appointment with his GP. Lucy’s work colleague brought her to a GP surgery and ‘made’ her sign all the forms to register with a GP and get help. Sameeha’s flatmate was concerned when she left the house one night locking her flatmate in. It was the flatmate’s mother who brought Sameeha to A&E.

When Joseph passed out during his first psychotic experience, his girlfriend was with him and called an ambulance.

Age at interview 22

Gender Male

Age at diagnosis 21

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My Mum takes this olive leaf extract supplement. You’re only supposed to have about 15ml a day. And I had some in my room, which I’d been taking a little bit a day, it’s quite good for you. But due to these, this belief and thought patterns, I was pouring myself glasses of it, and drinking it. So, yeah. Strange.

Due to a belief about the oil, or?

Yeah, something – as I say, I can’t quite remember. But something to do with your complex carbohydrates being really what I needed at the time.

Right. okay

Anyway. Couple of hours later – don’t know if this was – I fainted naturally, or if I faked it. Either way, I just remember passing out, falling on the floor. Oh, sorry – I wet myself. So, urine going everywhere. And then my girlfriend – that’s when my girlfriend obviously knew there was something seriously wrong. So she called the ambulance, 999. And whilst we were waiting for the paramedics to come, she undressed me, got me proper. And then sat me at the end of the bed, then quite quickly the paramedics came. And they – that’s my start to being funnelled through the system.

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Luke’s father, who himself had experienced bipolar disorder, recognised immediately that Luke needed help.

Age at interview 21

Gender Male

Age at diagnosis 19

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The thing is, when I started this new job, obviously I was getting – I had a lot of energy into it, I was trying to create this new image for myself. I was trying to become a professional. And my best friend, he sort of – I suppose at first he didn’t really notice it. Because he probably thought, you know, this is Luke going at it, he’s trying to – he’s trying to do his best. You know, I was – I had the energy to socialise a hell of a lot more. I was always the last one out, drinking the most. And it – yeah. And my best friend became quite aware that something was wrong, my two friends that were visiting became quite aware something was going wrong. My Dad came down, and I didn’t – I didn’t know this, but my friend told me that my Dad sort of, he knew straight away. He took one look at me, and he was like ‘okay, he’s got bipolar.

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However, family and friends didn’t always understand what was happening and could miss the signs that their loved one was having an unusual experience.

When Fran, who used recreational drugs, told her mum she thought she was a wizard, her mum said, well, I’m a wizard and so’s your gran. She didn’st realise it was serious until Fran tried to burn the house down.

Gender Female

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Yeah. And the way I look back on it now, I mean I was the one that the shit really hit the fan with. But I look back on my friends and stuff then, like we were all a bit mentally ill. Like when you’sre a 16-year-old and you’sre doing, you’sre getting that high every weekend. I think quite a lot of my friends weren’st that well, so they didn’st notice it in me really.

Did anyone else notice it? Or if they did, they didn’st say anything?

I think a lot of people thought I was just having a proper like strop at life and I was really kicking out and I was just trying to be rebellious. So like, Screw you. I don’st need rules. And that wasn’st what I was trying to do at all. I was genuinely terrified. But and that, I don’st think anyone noticed it. Cos like, it’s like I had a conversation with my mum. It makes me laugh now, but I was like, Mum, I think I’m a wizard. And she just thought it was a joke. So she got into this massive thing, she’s like, Yeah, well, I’m a wizard and so’s your gran and so’s your uncle. And most of your friends are wizards. And I took it genuinely very seriously and started going about and I was like, I’m a wizard, yes. But nobody got it until the shit really hit the fan.

So when the shit hit the fan, was that when you were thinking, you know, you’sd burn down, wanted to burn down the house? Was that the point when?

Yeah, I got put in the psychiatric hospital

So first your doctor came round?

Yeah, my GP. I just remember I said to him, something like, You don’st understand. You’sve got to let me burn this house down. We’sre all gonna die if I don’st. And he, and I had a big bottle of pop, a big bottle of lemonade and I poured it on him. I’sd been really ill, yeah, I’sd been really ill.

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Telling professionals

People often turned to their GP, Child and Adolescent Mental Health Services if they already had contacts there, or to A&E for help initially. Receiving care and treatment could mean different things including hospital stays and taking medication.

Green Lettuce went to his GP when he started experiencing paranoia and hearing voices. He was prescribed anti -psychotic medication.

Age at interview 25

Gender Male

Age at diagnosis 20

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And what happened next after you were hearing these voices, and you’sd been confined to your room essentially?

I went to the doctors and he just prescribed me medications.

So you went to the GP?

Yes.

And can you tell me about that visit?

He asked me what was going on in my head, and I said, I had thoughts in the third person, like voices in my head telling me stuff. And he said, Had I been taking drugs and stuff? I said, Just smoking weed. And he said, I hadn’st been I can’st remember what he said now. He said something else as well. And then he prescribed me some anti-psychotic medications, as well as a sleeping pill, and anti-anxiety pills as well.

Can you remember what the antipsychotic was?

At first it was Risperidone, and then it was Seroquel then it was quetiapine and then it was Abilify. But that was with different doctors.

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Fran describes being taken to hospital.

Gender Female

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Yeah, the ambulance people came and I just refused to go with them, point-blank refused. And they, and they were like, You’sll make it like harder for yourself. You don’st understand that we will get you to a psychiatric hospital. I was like, No, you won’st. You can’st force me to go to hospital. You’sre talking crap, blah, blah, blah. And then after that the police came. And they’sd been saying to me, If you wait for the police, you’sve got no choice. They can handcuff you. They can put you in the back of an ambulance. And I just thought they were talking rubbish. Cos, because I thought, Well, I’sve not really committed a crime. But then they came and they put me in handcuffs and just like proper bundled me into an ambulance and took me to hospital.

So they took you? They, they didn’st get the police in or anything?

No, no, they did get the police in.

Oh, right. And then the police took you to hospital?

Yeah, the police turned up and, yeah, they like handcuffed me and everything.

And took you the, to the hospital?

Yeah.

Did anyone come with you?

Yeah, my dad did. And he was just like all over the place. Like he didn’st know, it wasn’st very nice. And then he came and he was like, This is my daughter. Please look after her. And he, I don’st think he could really like handle it. So he left and then, yeah, I was just in the psychiatric hospital, yeah.

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Those who were still in school, college or university also sought help from school counsellors, and others. Joe had been seeing a school counsellor due to a bereavement when he had his first experience of psychosis. When he told her he was hearing voices telling him to kill people she quickly referred him on to specialist mental health services.

When Nikki told the school counsellor what she was experiencing the counsellor tried to explain it but then Nikki had to return to her lessons.

Age at interview 19

Gender 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’st 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.

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When Sam had hallucinations in school her head of house found her a key worker who she could talk to.

Age at interview 18

Gender Female

Age at diagnosis 17

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Head of house and that sort of someone you could go to—

Yeah and I sort of just sort of like and then she gave me a key worker. She set me up with a key worker who I’ve still got contact with. He just checks up on me to see sort of how I’m doing. And then, she sort of like did some work with me make sure I got my course work done. Make sure teachers gave me work. And then that sort of went into year 11. And then I started going back- and in year 11, I started going back into sort of normal classes and then ’cause I was with and then it sort of got worse again. And I ended up not in classes again doing more work with my key worker. And like I’d go running like into her like saying like, there was someone watching me. I’d start having like full conversations with people who weren’t there or people who were like, ”Who you talking to?” and I’d say, ”You know, that person stood there.’ And there’d be no-one there. My key worker obviously knew, like sort of, what she would just sort of say to me, ”You can talk to me about it.’

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A few were already seeing CAMHS for low and depressed mood when they had their first experience of psychosis.

The first time Hannah had a visual hallucination, she was already seeing CAMHS to help with her low mood and depression. Her parents encouraged her to speak to CAMHS about her experiences.

Age at interview 19

Gender Female

Age at diagnosis 15

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And at the time did you talk to anyone else about it?

No. I didn’t. I didn’t want to- I don’t know, I guess if you talk about it then it’s real and I didn’t want to think it was real and that it was happening.

And what kind of sense did you make of it at the time?

I didn’t understand what was happening. I hadn’t heard of it before. I didn’t think, think I was very well educated on it. I, I had no idea what psychosis was before I had it.

Did you mention it to friends or family?

No the first time I mentioned it was when I was in CAMHS and I was talking to them about it like how I was feeling and they asked what was going on and I told them.

And how did that happen? How did you get to that point of going to CAMHS?

I was feeling low and my family were noticing it. And they spoke to my GP and they referred me to CAMHS.

Okay. And so that was all kind of happening at the same sort of time or was that later than that initial time when you saw that image?

It was whilst I was being supported by CAMHS that that happened. So I was with CAMHS for a, a little under a year, I think before that happened.

Oh right. Okay. Was that for anything in particular you were already with CAMHS?

Just my low mood I was with them for that and struggling with making friends and that sort of thing.

Okay. Yeah. Right, so they were already seeing you. Did anything change then once you’d talked to them about the images that you were seeing?

I think it got worse.

Can you tell me a bit more about that?

They just became more frequent. I could see them every day. And it would vary in what I was seeing, so it could be like little gremlin looking things like Harry Potter sort of things you’d see. And they’d follow me or stand in the distance and stare or sit and watch me and I’d see them. And then I’d look at them and then they’d disappear.

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First experience of psychosis

This section is about the first time people noticed they were experiencing something that seemed 'out of the ordinary'. The people we interviewed had their...