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Andrew X

Age at interview: 24
Age at diagnosis: 14
Brief Outline: Andrew started to experience psychosis when he was 14. He has had many diagnosis but thinks the phrase “depressive psychosis” best describes his experience. He does not take any medication for his psychosis and manages his mental health day to day.
Background: Andrew is an elected local councillor. His ethnicity is White British.

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Andrew was 14 when he first experienced psychosis. School was frustrating and a struggle and he was bullied. Eventually he stopped going to school and became socially isolated. The first thing he remembers about the onset of his psychosis was believing that his thoughts were being broadcast to other people. He became paranoid about what others might think of him when they heard his thoughts, and felt that he had to stop himself from thinking.

Around the same time, he started hearing three distinct voices, which took on different personalities: the ‘good’ the ‘bad’ and the ‘ugly’. The ‘good’ would tell him he had to be good/angelic/perfect all the time, the ‘bad’ would tell him to do bad/horrific things and the ‘ugly’ was how he viewed himself, stuck between the other voices. These voices would keep him up at night, and the lack of sleep in turn impacted on his wellbeing. He also had paranoia and delusions that he was a sinner and had to punish himself, for example if he thought he had insulted someone he would punch himself in the head to let the stress and anger out. 

Over time this built up and eventually he had what he describes as a “psychotic breakdown” when his voices told him that Satan was going to kill him, so he jumped out of a window, and over a fence and ran “Forest Gump style”, until the police picked him up. He was given a Mental Health Act assessment. He remembers how frightening it was, at the age of 14, to have clinicians going over his life in detail and deciding whether he was going to be forcibly detained and medicated. Although he wasn’t sectioned, they did what he calls a “quasi section” where they told him they would section him if he didn’t do everything they said. 

Andrew was supported by CAMHS and EIP until he was 18. He describes the care he received, particularly from EIP, as amazing. The team were very dedicated and treated him like a human being. The transition to adult services, however, was poorly managed. He was basically left with no support. Although he describes having a good relationship with his social worker, the psychiatrist was not interested in him as a person and this ultimately had an impact on his mental health. For example, the psychiatrist at EIP was very engaged with monitoring the effect of his medication and took him slowly off risperidone (anti-psychotic) while introducing aripiprazole (anti-psychotic), along with fluvoxamine (SSRI) and melatonin for sleep. This worked well for some time. However, when Andrew transitioned to adult services the new psychiatrist did not monitor his medication and the combination was not suiting him anymore. Andrew took himself off the medications overnight and had a very difficult transition over two years, but became medication free. He says it was the worst and best thing he ever did, but if he had that time again he would have come off the medications more gradually.

Andrew has taken different types of medication over the years including lorazepam PRN (benzodiazepine), which helped with the acute episodes. When he was in hospital he was given a high dose of the anti-psychotic risperidone, which stopped the psychotic experiences and gave him the opportunity to use some of the other therapeutic services. However, there were side effects, such as weight gain, dribbling, twitching and muscle cramps, and it suppressed his thoughts: like a straight jacket for the brain. 

Andrew actively manages his mental health and works hard to regulate his emotions. He is very aware of how boredom, social isolation, lack of sleep, anxious feelings and stress affect his mental health. He describes a traffic light system whereby ‘green’ represents the times when he is managing his mental health, ‘orange’ means that there is no room for self-management, he experiences suicide ideation, starts isolating himself and he needs help urgently. When he gets to ‘red’ it is like going over a cliff edge and he will be very unwell for a long time. When he spots the signs of things descending towards ‘orange’, he knows that things can change for the worse very rapidly. Despite this awareness he says that there is very little support for him when he needs help. Adult mental health services are not good at responding if he presents himself to them when he needs their help. Although he knows that getting their help will prevent him descending into a crisis, they don’t seem to be interested until things are at their worst.  

For Andrew, a good mental health practitioner is one who is prepared to treat those he or she is working with as fellow human beings, and not as patients. He remembers one time when he called the police because he was in crisis and the person on the phone asked him what kind of music he liked. That simple question was so powerful, because it meant that the person was relating to him as a fellow human being. 

Andrew has found many ways to manage his mental health day to day. He finds that if he sets aside time in the day when he allows himself to ‘day dream’ – allowing his thoughts to flow in a natural way – then his thoughts are quieter at night when he needs to sleep. He uses other techniques to ‘interrupt’ psychotic symptoms, such as repeating a word over and over, which produces a sort of meditative state. He alternates between these and other techniques like mindfulness, and sometimes just needs a distraction – watching TV or playing on a video game for a while. 

Work is very important for Andrew. He finds that he needs to keep himself busy. He is very focused on work in the public sector and has been elected to serve as a local government councillor for two separate terms. Politics is a passion for him, as is mental health advocacy, and he is always very honest about his mental health. He feels that speaking out is important to end stigma. He is also currently studying to be a social worker.
 

Andrew X, explained how bullying led him to “self-loath” and he began to hear voices.

Andrew X, explained how bullying led him to “self-loath” and he began to hear voices.

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I had quite a difficult time at school and didn't really respond the best to education I was quite frustrated there. And I ended up really struggling. So I just stopped attending school. I started to become quite socially isolated and as time went on, I sort of- as that social isolation grew, I became, I really started to self loathe. So I hated myself. I couldn't stand myself, you know. And that sort of self-loathing sort of developed into something quite severe for me, you know. It was almost like this big black cloud came over me. I was 14 years old at the time. It wasn't the best of situations to be in. Then I started to experience some really strange phenomenon's, I started becoming really paranoid. I started to hear things. So I heard three voices. I started to hear three voices. 

So at this time, you are in school and you said you'd always been kind of unhappy in school. How long had that all been going on for?

I'd say probably about two years, yeah. And that was sort of the apex of that. You know, I had some difficulties with bullying and all that as a lot of people do in school, unfortunately. And it just built up. You know, and I didn't have a, didn't have any opportunities to make sense of my feelings and my emotions. It just got worse and worse and worse and worse and worse.
 

Andrew X’s experience of psychosis led to severe depression and he felt “destroyed” as a person. He said it seemed as though the foundations of his life had collapsed.

Andrew X’s experience of psychosis led to severe depression and he felt “destroyed” as a person. He said it seemed as though the foundations of his life had collapsed.

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I think that particular episode where I you know, where I just jumped out the window and then ran, because I thought Satan was gonna come and kill me. That's probably my first real experience. But I'd say the first, the first phenomenon, if you will that I remember in particular, a particularly difficult one. Something I think is called 'Thought Broadcast' and this was, out of everything I experienced out of the voices, out of the self-harm, out of the depression, out of the suicide ideation this was the most difficult to deal with. So I'd be sitting here and I'd be you know, just thinking, as people do and you know their mind is their sanctuary. They should be able to think what they want. But I felt as though people would be able to, that my thoughts would be broadcast to other people. So people sitting in the room with me would be able to read what I was thinking. So let's say, I thought, oh, you know, [friend’s name] has some really terrible shoes. I would feel as though [friend’s name] would be able to hear that. So that's really difficult, because then your thoughts don't become your own. So you're guarded about what you're thinking and you're stopping yourself being able to think. That's horrific. And that's really difficult to sort of manage and particularly when you believe it's true. And then you get paranoid about what people think about what you've been thinking about them. That's, that, that, that, that really destroyed me that did. That was a really difficult experience. And that's probably the most powerful memory from that, you know, the first memories. It took me a while to actually resolve that. Took a lot of counselling or therapy, whatever. 

How did that sort of break down and change you as a person, do you think?

In the short term, I think in the short term and to the medium term it destroyed me as a person. It, it took away everything I thought it was and put it in a blender and just made me just this, you know, I didn't become this overnight. But, you know, it sort of the, the epitome of what was going on at the time. I was depressed. I was suicidal. I was hurting myself. I was hearing things. I was, you know, overweight. I felt I was ugly. That, that low point on my life where I felt all these really negative things. You know, I didn't wanna be here anymore. 14 years old and you wanna kill yourself is not really the best of situations to be in. So in the short term it sort of like brought about that collapse, you know, in the entire shaky foundations that was my life at the time just collapsed and fell into a pit of darkness. But, actually it made me, as a person and it made me who I am today. And it made me see the world very differently. It gave me a very unique perspective on the world, because when you go through that trauma at that young age, you become really really mature. 
 

Andrew X received help for his psychosis after his “psychotic breakdown”. However, he didn’t seek help beforehand because “no-one talks about it” and he felt “outcaste”.

Andrew X received help for his psychosis after his “psychotic breakdown”. However, he didn’t seek help beforehand because “no-one talks about it” and he felt “outcaste”.

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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?
 

Andrew X has been “labelled with all sorts” of diagnosis which he finds “meaningless”. He becomes psychotic when he is stressed or in a depressed mood and thinks the term “psychotic depression” describes his experience better.

Andrew X has been “labelled with all sorts” of diagnosis which he finds “meaningless”. He becomes psychotic when he is stressed or in a depressed mood and thinks the term “psychotic depression” describes his experience better.

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So, about diagnosis, if you go through my patient records you will find I've been labelled with schizophrenia, with—I suppose sometimes they just put psychosis and they make a word up, put in front of it or after it. Loads of different types of psychosis. OCD, adjustment disorder. I don't know where that one came from [laughs]. It's like, I think, I must have had some problems or something, oh well, he's clearly not adjusting adjustment disorder - where did that come from? Bipolar what else, depression, anxiety they were always labelled in there somewhere. I think probably one of the only ones I haven't got is personality disorder. Which we could probably speak for a long time about that. But so I've been labelled with all sorts. And [sighs] it makes, diagnosis, to me is irrelevant, right, it means nothing. I've been labelled with so many things, it's like what, for me what I've labelled myself with is psychotic depression. I think that's not an actual thing, but for, it makes sense. So, looking back on my experiences and reviewing all my patient notes and, and doing all that work, I know that I start to become psychotic when I start to experience stress or depression. That is when the psychotic thinking starts. So, that, to me, that's where it fits in. So that's what I've, I've just like myself, I've given the label to myself. And you look at some people sometimes and you look at some professionals and you can tell they're proper judging you [laughs] when you say that I've diagnosed myself. But the other diagnosis that I've been given, the other labels for me was just meaningless. 
 

Andrew X describes his voices as “the good the bad and the ugly” and explains how they fed into delusions and have caused him to hurt himself.

Andrew X describes his voices as “the good the bad and the ugly” and explains how they fed into delusions and have caused him to hurt himself.

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I started to hear things. So I heard three voices. I started to hear three voices. I called them the good, the bad and the ugly. 'Cause the good was always giving like a running commentary on, you know, how, you're sort of meant to be good all the time. You know, you have to be angelic and perfect. Difficult, almost impossible to attain. The bad one was, of course, for me that manifestation- Satan himself was telling me to do all these bad and horrific things. And then the ugly was, I viewed as myself, almost like the person in the middle giving the commentary. So they would keep me up at night and stop me sleeping, sleeping is really important to your wellbeing and as I said things started deteriorating. I also started to become really religious at this point. So I started to take on a very odd interpretation of Christianity. So I believed I was sinful. I believed that the delusions- and so I'd have delusion, delusional thoughts about myself, which I would believe were true and I'd punish myself as a result of those delusional thoughts. So I would, you know, let's say I thought let's say I thought I insulted you or did something like that. Then I would punish myself for insulting someone, even though I didn't, it was a delusion or the voices told me to do it. So I'd do things like whip myself with a belt. I’d punch myself in the head to let that stress and anger out like the—when people talk about mental health and particularly stuff like psychosis, psychotic episodes it was it's not physically hurting you, you know, it's mental health and not physical. Actually, my brain hurt. And you become really exhausted. And so you really do. It is, it you have, it manifests itself physically as well.
 

Andrew X describes how difficult it was for him when he believed that others could hear his thoughts.

Andrew X describes how difficult it was for him when he believed that others could hear his thoughts.

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But I'd say the first, the first phenomenon, if you will that I remember in particular, a particularly difficult one. Something I think is called 'Thought Broadcast' and this was, out of everything I experienced out of the voices, out of the self-harm, out of the depression, out of the suicide ideation this was the most difficult to deal with. So I'd be sitting here and I'd be you know, just thinking, as people do and you know their mind is their sanctuary. They should be able to think what they want. But I felt as though people would be able to, that my thoughts would be broadcast to other people. So people sitting in the room with me would be able to read what I was thinking. So let's say, I thought, oh, you know, [friend’s name] has some really terrible shoes. I would feel as though [friend’s name] would be able to hear that. So that's really difficult, because then your thoughts don't become your own. So you're guarded about what you're thinking and you're stopping yourself being able to think. That's horrific. And that's really difficult to sort of manage and particularly when you believe it's true. And then you get paranoid about what people think about what you've been thinking about them. That's, that, that, that, that really destroyed me that did. That was a really difficult experience. And that's probably the most powerful memory from that, you know, the first memories. It took me a while to actually resolve that. Took a lot of counselling or therapy, whatever. 
 

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.

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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.
 

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”.

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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. 
 

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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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. 
 

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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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.
 

Being treated as a human being was important to Andrew X. He had mixed experiences with practitioners, and said some of the people who made the most difference to him in hospital were the receptionist or cleaner who he could have a “bit of banter” with.

Being treated as a human being was important to Andrew X. He had mixed experiences with practitioners, and said some of the people who made the most difference to him in hospital were the receptionist or cleaner who he could have a “bit of banter” with.

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Sometimes you do wonder how and why some of these mental health professionals are working. I say that, but there are some absolutely amazing inspirational practitioners who, who without whom I wouldn't be here. People who have really helped me in my journey in my life. 

The difference is—

That they have made the differences, those positive, you know, those positive, because they're just, connected, connected me like I'm a human being. But there've also been some pretty poor, poor practitioners out there who have caused me a lot of damage, lasting damage. So it's really, it's a shame that that level of consistency is not there. But often, often it's like you get the most, I have found the people who've made the most difference in my journey haven't been necessarily the mental health nurses or the psychiatrist, they've been like the cleaner you have a bit of banter with. You can have a joke with or the cook who knows that you like ribs done in a particular way and will do them and like show you a bit of encouragement, a bit of kindness, a bit of humanity or you know, the receptionist that is able to have a joke and a laugh with you or the health care assistant who is a bit down to earth and will show a bit of themselves, you know, they'll not be afraid to be human and, and they've made the difference, I mean, particularly when I've been psychotic, because when you've lost contact with reality then the best thing to bring you back down to earth is someone being human towards you. When you've lost contact with reality, you don't need forced, artificial interactions – that just makes it worse. You need some humanity. That's why the Early Intervention Psychosis Services work so well, because they're just humans. They are not, they're not pretending to be some sort of super mental health nurse. They are just, let's go and grab a coffee and talk about stuff. 
 

Andrew X talks about what he calls the ‘quasi section’ – when you’re threatened with being sectioned if you don’t stay voluntarily.

Andrew X talks about what he calls the ‘quasi section’ – when you’re threatened with being sectioned if you don’t stay voluntarily.

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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.
 

For a time Andrew X’s combination of medications suited him, but when he moved to adult mental health services his psychiatrist didn’t review his medication and Andrew X stopped taking it. In hindsight he wishes he’d come off gradually.

For a time Andrew X’s combination of medications suited him, but when he moved to adult mental health services his psychiatrist didn’t review his medication and Andrew X stopped taking it. In hindsight he wishes he’d come off gradually.

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But I met up with a new psychiatrist who said, well, no, no, no you don't need this at the moment. You know, You need a different combination. So I was transitioned onto Abilify or aripiprazole fluvoxamine, not fluoxitine, fluvoxamine and melatonin to help with regulates sleep and that was a wicked combination. Wicked in terms of really good. It was like the psychiatrist knew exactly what I needed and prescribed me exactly what I needed. 'Cause that combination it, it helped build my motivation again. It helped get my energy levels back. The side effects wasn't as severe. The fluvoxamine helped with some of the obsessional thinking that was going on. And by talking to me, like a human being again, the psychiatrist sort of was able to work out what I actually needed. 

So by interacting with me as a human and as a normal person, he managed to get the information he needed to provide the right combination of medication. And he did it really good as well. So, like the Risperdal (risperidone) was up here [indicates it being high] and then he started the Abilify (aripiprazole) on top of that. And then he slowly reduced the Abilify and increased, slowly reduced the Risperdal and increased the Abilify. Increased the Abilify again and reduced the Risperdal. It went up like that until the Risperdal was gone. I also had PRN, which I took when I needed to take it. So I think I was on lorazepam PRN which really helped me deal with some more acute episodes. But the, the fluvoxamine, melatonin and Abilify worked really well at that time and it worked well until I got transferred over to adult services, completely. And then had no psychiatry input. So whereas my previous psychiatrist was adjusting medication when I needed it. He was talking to me about it. Talking to me about the side effects. The new psychiatrist wasn't interested in any of that. It was like, well there's the medication you're on, deal with it. If you don't wanna take it that's your choice. And as time went on with this combination of medication the side effects started to become a lot more real. 

So, started to get the same side effects as I did on Risperdal as time went on. I was like, one day I just said, you know what, I'm not gonna take this med—tablets any more. And it was simultaneously the best and worst decision I ever took. It was the worst decision, because I nearly killed myself as a result, 'cause it was, it just threw my chemical balance all over the place, it weren't, it weren't a wise thing to do. 'Cause I didn't tell anyone either. So I did it without telling anyone. I think if I could change anything about my journey it'd be that I'd come off my medication better, so I'd tell someone and do it gradually as opposed to just coming off it, 'cause that really it caused me a lot of physical and emotional problems, really.
 

Andrew X is an elected councillor and does a lot of work around mental health. He finds it “therapeutic” and thinks his experiences of the mental health system have prepared him well for politics.

Andrew X is an elected councillor and does a lot of work around mental health. He finds it “therapeutic” and thinks his experiences of the mental health system have prepared him well for politics.

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So work for me really is important. Because it's not about working it's about doing something productive with my time. 'Cause it's a distraction and it gets me to pour my energy into something, it gets my mind thinking about something positive. I started, I mean I've been working even when I was in mental health services. I say, working like I do a lot, did a lot of participation stuff. So like sit on- go on interview panels. I'd, you know, talk about my experiences to groups of people and things like that. That was so helpful for me, 'cause it gave purpose to my experiences. A lot of my jobs are rooted around that. They allow me to, they've allowed me to use my real negative and positive experiences for something productive and to really be a catalyst for change in some cases. So work for me has always been therapeutic. 'Cause there's always, I, I couldn't work in a job where I was either being discriminated against, 'cause it does happen, you know, and I always have the view that if I'm in at an interview, I'm always gonna be open about my experiences. 'Cause if you're not prepared at that stage to be accepting to my experiences then when I really need you, when I'm at the lowest of the low, you are not gonna be able to support me then. I don't want to give you my time. My time is [laughs] not worth it. So it's been difficult, but I think I've done pretty okay. 

And you do so you've got your political work.

Yes, and I got, I got elected whilst still being in and out of [local area’s] Mental Health Unit. And don't ask how, but I'll always remember this. I was on the doorstep with someone and I was having a conversation with them about ‘this is what I'm standing for’ and you know, and ‘this what I'm passionate about’. And he looked at me and he sort of said, ''You're crazy.'' And I sort of took a step back and went, ''Yeah, I am.'' And then he shook my hand and said, ''You've got my vote.'' [Laughs]. And I think I became- mental health, being in mental health services prepared me for politics. 'Cause in mental health services you have to spin to get what you want and need. You know, you have to say certain things to certain people to get what you need, 'cause the system is so bureaucratic. You understand people a lot better as well when you're in mental health services. And I just, I don't know how, but it just really fit, really fit well. I suppose some people get like art, some people like music, you know. For me, politics is a way of expressing my experiences. And I'm okay at being articulate enough to do that. So, it just fit in well.
 

Andrew X tells employers about the benefits of employing someone with a mental illness and the considerations they might need to make.

Andrew X tells employers about the benefits of employing someone with a mental illness and the considerations they might need to make.

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So I think if you're employing someone with schizophrenia I think the first thing to remember is, if you do it right, you are gonna get a very loyal employee. A very very loyal employee. A very creative employee. Not always but I think the rule is, you'll get a loyal and creative employee, because you've given them a chance. You've given them some hope. You've given them the ability to use their creative skills. Most people with mental illness, or mental health condition, however you wanna phrase it, are very creative and have a lot of energy. If you, as an employer give that person the space to invest that energy and invest that focus and invest that passion then you're gonna be onto a winner. Look at some of the most successful people in society, a lot of them have experience of mental illness. That's what you're getting when you're an employer. I think practical stuff though, I think being open is so important. Being open with your employer and not sort of hiding away from it just saying, okay, really pleased you've felt able to disclose that. How can we support you? 

And sometimes it's as simple as just like, you know, giving them some time out, being flexible with their working hours. You know, particularly if someone's on medication, afternoons are so much better than morning, because of what I spoke about earlier, you’re fighting the chemicals. And a lot of people, you know, work better towards the evening. So being flexible towards that. As I said, being able to talk also remembering that you're not their mental health nurse. So if they need support, encourage them to get that professional support and working with them to get it. You know, 'cause you are not gonna fix 'em overnight. But you've got such, as an employer you've got an opportunity to transform someone's life. You've got an opportunity to be a real change. And you've got an opportunity to just really capture and harness a creative and energetic person. But you need to just be a bit flexible. You need to be a bit understanding that it's not gonna be easy. But the rewards for you as an organisation that I would argue are gonna be quite substantial. It's not really, and you- as an employee it's not always gonna be perfect. But I think it just says a lot about your organisation if you're able to be responsive to someone's acute mental health needs. You'd be responsible if they were in a wheelchair. Be quite clear, if they're in a wheelchair what you'd need to do. And it's not gonna cost you a fortune to be flexible with your working hours to be flexible—and have those conversations beforehand. Have those honest conversations beforehand. Don't be afraid of that. And I think that's really valuable – be human about it.
 

Andrew X talks about the challenges of managing finances with psychosis as a young person. He notes for example that young people can easily get into debt without the right support.

Andrew X talks about the challenges of managing finances with psychosis as a young person. He notes for example that young people can easily get into debt without the right support.

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And in terms of kind of finances, do you see mental health 

Yeah, It affects your finances. Something and, and I didn't really get much support in terms of this. Because when I was on my high my spending habits were irregular. I'd buy irregular things and I'd financially I'd really suffer. I'd take out loans and get into a bit of debt. And there's next to no support out there for, for that. There's no safeguards. There's no nothing. So when I was really on my high —I really struggled with that. It was really difficult for me to manage my finances. You know, when I wasn't working ESA was a joke. They'd stop my benefits for ATOS assessments and they'd screw me over so I couldn't pay rent and things like that. So my finances were in a huge mess when I was unwell. I wasn't like 20K in debt or anything like that. It's wasn't ridiculous levels, but that can happen, very easily as well. 

But actually what I started to do was as I became well and as I wasn't as unwell, I started to manage my money a lot better. So I've gone on that journey and been really financially erratic to now I'm like, I'm managing my money better than other people and that's uncomfortable for me. I'm not, this is odd. Why are things going so well. I'm from a working class background. I've grown up on a council estate with most times it's been me mum bringing me up. So, I'm not exactly the most well off person in the world. But I manage things a lot better than I did. So, yeah there's definitely—but you don't, no-one really sort of does that. And it's embarrassing to talk about it. No-one likes to admit that they've, that they've messed up money. And also, yeah, most young people mess up with money. You know, and you have to bear in mind that that actually that's, it's not a completely unique position to be in debt as a young person. So, yeah.
 

Andrew X talks about the importance of keeping busy and getting enough sleep for his mental health. Distraction tools also help when “dangerous thoughts come along”.

Andrew X talks about the importance of keeping busy and getting enough sleep for his mental health. Distraction tools also help when “dangerous thoughts come along”.

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Can you tell me a little bit about the kind of things that you have discovered that help you?

Sleep. And sleep is a really difficult one, because when I was unwell, sleep just did not happen, because I was hearing voices, I was anxious, I was paranoid. So just saying to someone get some sleep is not really a valid solution. But sleep became really important to me. Doing something with my time and I know it sounds incredibly trivial, but for me, the biggest danger is being at home just sitting there on my own thinking, that leads to a very slippery slope very very quickly. So something about for me just even if it was volunteering, some light stuff that's not too heavy that I can engage and get involved in and you know, really use to help my to help improve the way, the way my mental health is. What else? I suppose, knowing what distraction tools I need at the moment. So sometimes if I feel a psychotic experiences coming on, I need to distract. It's like there's a certain threshold that I reach where I'm like, nah, you, you can't do any more [laughs] any more mindfulness techniques. You just need to distract yourself and boot up the computer and play some computer games, 'cause the alternative of not distracting myself is some very dangerous thoughts come along and very dangerous experiences. So it's knowing when to be able to distract. 
 

Andrew X describes a traffic light system he uses to manage his wellbeing.

Andrew X describes a traffic light system he uses to manage his wellbeing.

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So I've sort of a green/amber/red sort of thing and green is sort of like that, you know, I've a lot of space in green. If I start approaching amber, the, the space gets a bit shorter. The space do I really have to do something. And if I get in that sort of red zone, I'm not coming back for a long time. So I have to be really proactive to know myself. Know when I'm having a couple of days. Know when I haven't had a coupla day's sleep. Know when I'm feeling stressed. Know when I'm anxious and then and take proactive steps to try and manage that in the green zone [laughs] so then I'm not 'cause if I get to the orange and red zone and I'm trying to manage that it doesn't work. So when those voices come along, when those psychotic experiences start, that's not good. It's not good at all. 

So what does what does orange zone look like?

Orange zone is when I sort of, if I don't act soon, so if I don't either reach out to a professional or do something, things will get dodgy. So I stop, I stop going out and I start isolating myself. I may start some odd sleeping behaviour. My sleep hygiene, my sleep will go to the pot [laughs]. I will start having suicidal idiations. I'll start self-harming sometimes. So those are the, those are the things that I have to watch for in that amber zone. And red is like, you know, you may as well get the Mental Health Act and put me in then. It's such a short, it's like, it's like a cliff drop, because once you start rolling, rolling down that hill, it's really difficult to bring yourself back up again. 

It sounds like you are getting quite a good handle on seeing patterns, I suppose. 

Yeah, I can, I've got a really good—I can, I can tell you exactly when I'm struggling and exactly when things are not going too well. When I'm in that, when I'm in that really, when I'm in that space. So I know, I know how long roughly I've got [laughs]. You know I can sort of be able to, not predict it, but I can tell you that I need action. Something needs to give. 
 

For Andrew X mindfulness is “living in the moment” and sometimes it can mean letting his mind just “wander”.

For Andrew X mindfulness is “living in the moment” and sometimes it can mean letting his mind just “wander”.

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I'm not gonna try and preach mindfulness, because there's a whole, there's a whole sort of area. But for me, what mindfulness is to put it simply is being very living in the moment. So I've got anxieties further down the line, you know, making sure that I bring that back to myself. What's happening now for you, Andrew. Let's put those anxieties into perspective. You know, what's so it's really like really just thinking about these things that are coming up, you know. I'm feeling really sad at the moment. You know, it's okay to have a cry. And it's okay to eat that tub of ice cream, you know, and tomorrow you are gonna get up and you're gonna, you know, you are gonna do your stuff, because life keeps on going. So, its just, for me that's what mindfulness is. It's, it's very much living the present moment and not, trying your best not to let those past anxieties or future anxieties get on top of you. And there's whole sorts of techniques and things that people can use and there's a whole sort of, but that's what it means to me. And I sort of have to, to have a talk to myself. I talk to myself a lot, I don't care [laughs]. 'Cause it's really important to try and get that out. And also, daydreaming. I wholly recommend daydreaming, right [laughs].

It sounds strange. But just having some time built into your day where you are just sitting there and thinking. Just sitting there and letting your mind wander. It really helps with my sleep. Just like, you know, half an hour or an hour just sitting there like, you know, I could really do with a pizza right now or I could, you know, I really fancy bowling or what would it be like if I was prime minister or you know, should I do this project. Just letting your mind roll in a calm, nice relaxed way of just we don't do that enough. We don't allow our minds—on our mobile phones and we've got headphones in. We are reading. We are thinking about what we are gonna. Sometimes we need to take a step back and just go, yeah, you know, let my mind go for a little walk here. 
 

Andrew X thinks unprocessed emotions contribute towards his psychosis.

Andrew X thinks unprocessed emotions contribute towards his psychosis.

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Have you noticed that there's always sort of depressive and lonely state that comes before any of the experiences that you've had the paranoia or the hearing the voices?

I'd say unprocessed depression, anxiety, stress and traumatic events. So when I processed things in my mind the right way, I am feeling sad, okay, let's look at this sadness. Why is it? It's because, I don't know, your favourite cake at Greggs ran out. So, okay, that's, that's nothing psychotic and you don't need to worry about that. File that away in the correct way. That, that bit of depression is dealt with. But when I was younger, all these depressive things that were, all these depressing thoughts that were happening, I didn't have the understanding to be able to process them correctly. So they were just causing my brain stress. They were just hitting on my brain the anxieties were hitting on my brain and they weren't dealt with in the right way. You know, so they weren't processed. They were raw. It's like, you know, if I had a, if I cut my arm and there was blood pumping everywhere, you know, it's, it's almost the same. You are gonna do something to stitch that back together or deal with it. You're not just gonna put a big plaster on it and hope that it sorts itself out, because it needs something more, because there's a big gaping hole in my arm. And [sighs] that's what, for me what I need, that, that for me is the root of my problems, is that, regulate yourself emotionally which is not easy to do, by the way, when I fail I will hold my hands up to that. I am not perfect. And then then that helps deal with the psychosis. In some cases it stops it completely. You know, I can be really responsive to myself. Because I know my emotions and I know that yeah I am a bit stressed this week. I need to take some action about that. 
 

Andrew X talks about the importance of “sleep hygiene” for keeping well.

Andrew X talks about the importance of “sleep hygiene” for keeping well.

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It's gotta be about looking at my sleep, making sure I'm getting good sleep. Making sure that I'm not, that I'm socialising, making sure that I'm making those connections. Doing some mindfulness stuff. Meditation if I have to. All that sleep hygiene jazz that's talked about. Sleep hygiene is like, you know, getting a good routine you know, have a nice warm, hot drink. Don't drink caffeine before bed and all that sort of stuff. 

Does that help for you?

Yeah, it does. And I get really angry having to admit that sleep hygiene works. 'Cause I don't like it. I don't like being told how I need to manage things. Like, it's like, but it works. It's like and you're sitting there and you're like, you know, it does work. It's like no, it doesn't. You know, it's that tension, why is this working?

Some things really simple and so I now have to be really like, you know, maybe I shouldn't pull that all-nighter to get something done or whatever. And I just have to be really careful in that respect. And ultimately, if, if those things, if, if those, if things still aren't changing then I need to be able to reach out. But the thing is, I think I said this earlier on. I reach out, there's no services that are responsive to that. 
 

Andrew X’s experiences of psychosis “destroyed” him, but also made him the person he is today. If there was a magic pill that meant all his experience of mental illness would disappear, he says he wouldn’t take it.

Andrew X’s experiences of psychosis “destroyed” him, but also made him the person he is today. If there was a magic pill that meant all his experience of mental illness would disappear, he says he wouldn’t take it.

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In the short term, I think in the short term and to the medium term it destroyed me as a person. It, it took away everything I thought it was and put it in a blender and just made me just this, you know, I didn't become this overnight. But, you know, it sort of the, the epitome of what was going on at the time. I was depressed. I was suicidal. I was hurting myself. I was hearing things. I was, you know, overweight. I felt I was ugly. That, that low point on my life where I felt all these really negative things. You know, I didn't wanna be here any more. 14 years old and you wanna kill yourself is not really the best of situations to be in. So in the short term it sort of like brought about that collapse, you know, in the entire shaky foundations that was my life at the time just collapsed and fell into a pit of darkness. But, actually it made me, as a person and it made me who I am today. And it made me see the world very differently. It gave me a very unique perspective on the world, because when you go through that trauma at that young age, you become really really mature. 

And you know you actually accept that everyone is on their own little journey. And everyone has their own demons to fight. And I don't want anyone to go through what I went through. So I just developed this sort of empathic way of being. I developed this real, what I think, you know, care for others as a result of it. And it also helped me understand just more about people, people spend their lives trying to get, trying to understand you know, about mental health and about you know, what those experiences mean and how we connect to them. I think my episode really helped me gain a really deep understanding of people and how people work. I think some people asked me, if I could, would I change anything about my experiences and I say, no, because they make me who I am. They are part of me. I mean, even if you had a magic pill and you said, Andrew, if you take this pill right, all your mental illness will go away. You will never become mentally ill again – I wouldn't take it. Why wouldn't I take it, because that's part of me. It's who I am. It, it's everything I've known and that doesn't mean I go around as some sort of you know, constantly ill, mentally ill person. It just means that I have a really strong identity of my mental health. You know, I'm very mentally healthy, because I have a mental health problem. And if I don't look after my mental health, the consequences are really severe for me. I become incredibly unwell. And I become the—it's life and death. I have to look after my mental health. I've got no choice. It's what I have to do. Just like if your physical health was in danger and you had a physical health condition, you'd look after your physical health. Mental health is no different. So I wouldn't take a pill, no. 
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