Andrew - Interview 24

Age at interview: 59

Age at diagnosis: 24

Brief Outline: Andrew had a 'normal' childhood but lost his leg in an accident aged 17. Later, he was admitted to psychiatric hospital aged 23. He became a 'revolving door' patient over the next 18 years and was homeless for some of that time. Now he has an MA, is involved in the user movement and enjoys playing guitar.

Background: Andrew is unemployed, works with the service user movements, single with no children. Ethnic background' White British

More about me...

Andrew says he had been ‘quite normal’ as a schoolboy, going to grammar school and then to university. He had a serious accident when he was 17 and lost his leg. By the time he was 23 he was in ‘quite a bad state’ and was admitted to psychiatric hospital for a short time. He was readmitted two months later and was given a diagnosis of schizophrenia. Andrew feels that this was precipitated by life events and he wasn’t given the proper psychological and physical help he needed following his accident. He was having difficulty attending classes at university as he couldn’t get around the campus. He also spent a lot of the compensation money for his leg on cannabis, and knows now that there is potentially a link between cannabis use and schizophrenia.

 

Andrew failed his degree and went home to his father. His parents were divorced, and his father and step-mother had him admitted to an old psychiatric hospital that used to be an asylum. Looking back now he thinks that he would have benefitted from Early Intervention Services. He came home again but had an argument with his father and lived in his car. He stole petrol, but eventually he was caught and was given a probation order. He was readmitted to the same hospital to do industrial therapy, earning £1.75 a week packing soap, and every two weeks was given depot injections that caused ‘debilitating side effects’. Despite the different backgrounds of the people in the asylum he says they all turned up destitute. After his second admission a nurse had reported that he wasn’t taking his medication and he was put on injections under threat of the ‘crash team’ who held patients down and forcibly injected them. Andrew got on well by and large with the other patients, and has friends from that time today. The food in the asylum he found disgusting. The Depixol injection he received gave him the severe side effect of akathisia – severe restlessness. In hospital he would be a ‘model patient’ and get himself discharged, taking up a place in a hostel and sometimes getting a low-paid job. He would save up some money and take off in a car, and end up living rough. He had a job in 1981and bought a house, but then stopped taking injections and became psychotic again. He was made redundant and travelled around Europe for a while. The house he had bought was repossessed and he lived rough again. During this time he was very psychotic and thought that the IRA were lurking in bushes, that the Russians were coming, and that people were signalling in Morse code. These thoughts would ‘occupy [his] every waking moment’. He wanted to escape the injections and he was admitted numerous times between 1974 and 1991.

 

In 1991 Andrew managed to negotiate with staff that he could have his treatment by tablets and not by injection, and he has taken them regularly until the present day. He has had talking therapies for the last 18 years and has liked the opportunity to discuss, with a third party, events in his life. He received a BA Honours with the Open University, an MA in 1998, and has been heavily involved in user committees. In service user groups he said that the members had to be empowered to do everyday tasks such as cooking and shopping since life was very different from inside asylums. Over the last 10-12 years he has had a great deal of support from his girlfriend and her family, and describes his girlfriend as a ‘rock on which I’ve stood’. He thinks that the term ‘schizophrenia’ has maybe reached ‘the end of its usefulness’ but that there are many people who suffer from psychosis or delusions, and by abolishing the term schizophrenia you would not abolish these things. Andrew suggests something like ‘perception disorder’ as an alternative.  

Andrew thinks that by abolishing the term 'schizophrenia' you won't get rid of delusions or paranoia, but that it could be replaced with something like 'perception disorder'.

But I think there is such a thing that’s described under the name of schizophrenia. I think there are delusions, there are paranoia and they do happen and by abolishing the term schizophrenia you’re not going to abolish delusions and paranoia. People will have paranoia, they will have delusions and it’s helpful to have medication that will stop the delusions and it’s helpful to have talking therapies that will enable you to come to terms with delusions and to address the problem of your delusions [coughs]. That won’t happen for everyone I know. There are unfortunately people who have delusions and paranoia and that remains with them. They’re treatment resistant. And that’s very sad. And those people should be properly looked after and they should be given the best quality of life. But for quite a few people if they have the right medication, medication that they agree with. If they have a care plan that includes medication that they agree with them, that doesn’t give them horrendous side effects, that they’re not going to drop off taking, then they will benefit from having helpful therapy from medication and from talking therapies. And I think that there always will be schizophrenia. I think that studies show that about 1% of every population in every culture throughout the whole of mankind will suffer from schizophrenia. And that won’t go away by avoiding the term schizophrenia. I think it might be helpful to abolish the name schizophrenia and to replace it with something like perception disorder which I think is a term they’ve used in Holland and it would be helpful to abolish the term schizophrenia in the same way that manic depression has been abolished and mental subnormality has been abolished.

Andrew has a 'predisposition' to psychosis and describes several stressful life events.

There was some talk about pre clinical diagnosis and that was mentioned on All in the Mind, in May or June 2010, and Claudia Hammond was quite right to include in her programme that day, and I think that, as I said early, I had a pre-disposition towards psychosis and schizophrenia, paranoia and things like that. I think I had a pre-disposition towards psychosis. And I had all these life events at the time, as I said I lost my leg when I was seventeen and a half, I failed my degree when I was 24. My parents got divorced when I was 23 or 24. And I smoked a lot of pot when I was about 22. All these things can be sort of pretty disastrous that anyone with a pre-disposition towards schizophrenia and so I think I followed a sort of typical pattern in those days. 

Later in life Andrew went on to get a BA and an MA.

And I’ve managed to pass a BA Honours with the Open University and I did an MA at Brighton University in 1998. I participated in service user committees which were the order of the day when community care was introduced. We had user involvement, and part of the user involvement scheme of things was that you would have a user charter for day centres or places where care took place and you would have an elected user committee with an elected chair person. I was chair person of the user committee at our day centre for a while. I found that very empowering. Those kind of the developments came along at the same time as I was doing a module for the Open University for my BA, and that module was called ‘Democratic Government in Politics’. So it was very helpful to do the module on Democratic Government in Politics, when issues like legitimacy, accountability, and those kind of the things were the order of the day when community care was first implemented. The 1990 Community Care Act, its full title was the 1990 NHS and Community Care Act. That legislated community care and that act was fully implemented from 1992 onwards. And we had user committees and we had a relationship with the management and with our carers that was different from the relationship in the asylums. We were more equal partners and the best managers and there were some of them round here, would say that they got their legitimacy, and they got, and their accountability from their relationship, their partnership with the user committees and this was all democratically done and it helped me to be doing democratic politics with the Open University, the same time that user committees and things were being established. 

Andrew was in a county asylum in the 1970s and would have found life bearable, even though conditions were harsh, had it not been for the side-effects of the injections.

And what was life like for you in a county asylum?

 

Well I would have accepted life in a county asylum. I would have accepted living in a ten bed male dormitory with no privacy. I would have accepted packing soap or assembling valves in industrial therapy for £1.75, so I could buy tobacco and I would have accepted that, and I would have even accepted the disgusting National Health food and many people accepted that as a sort of a version of sort of living in some kind of military barracks. Perhaps people who’d been around since World War II and National Service. You know, there were quite a lot of those people in 1974, because National Service only came to an end in 1962. So you had all the people who were still quite fit and young and active, and had their lives to lead. And they’d either been through World War II or been a National Serviceman. So kind of being a male dormitory and having menial tasks to do and that it was a bit like being in the army possibly. So there was that kind of element to it. I would have accepted that, but they did insist on giving me these horrendous injections which produced dreadful side effects, and that was sort of deal break for me. I was always trying to get myself discharged so that I could escape the side effects, the akathisia, the restlessness of the injections and that was the basis of my revolving door time. But I would have accepted life there. And many people over the years did find the asylums to be their home. And despite the privations and the conditions of life, where we had no privacy, you had to, you had to put up with communal resources all the time, your sheets and your clothes were all washed together with other people’s. And the general conditions of the asylums. And those people found it home. 

 

Andrew has been on atypical medication for the last ten years and found that it has less sedative effects.

I negotiated that I would have medication by tablet. I have been taking my tablets every day since 1991. In recent years, about the last ten years, I’ve been atypical medication. The one I have been on is something called olanzapine. It’s got even less sedative effects than the Largactil and Stelazine I was last discharged on. As far as I know, because I don’t have a lot of insight into my mental illness I haven’t been acting in a psychotic or paranoid way. I feel quite happy and content and I don’t have any unhelpful feelings that say, ‘the Russians are coming’ or that the ‘IRA are lurking around Kentish lanes, trying to do something against the Archbishop of Canterbury.’ I don’t feel there’s signalling going on, signalling go on to spy satellites or by Morse code or anything like that. I used to have those thoughts and they’re very unhelpful. I don’t have any of those thoughts today and I have had those kind of thoughts for nearly fifteen or twenty years. That’s due to the therapeutic effect of the tablets. Which I will accept. And as I say for the last ten years or so, I’ve been atypical medication and the one I’ve been prescribed is olanzapine. And I’ve got no objections to taking it. Each day is the same. You know, I mean I don’t have restlessness or extreme sedation. 

Andrew describes how after a nurse reported he wasn't taking his medication he felt intimidated by staff at an asylum into having injections.

One of the nurses reported that I hadn’t been taking my tablets, which I don’t know how they came to do that. So the psychiatrist called me in and said, “There’s some doubt about you taking your tablets. We’re going to put you on injections.” And this chap who I can only describe as a [forensic hospital] trained teddy boy who insisted on being called Mr. He had his white coat on with green epaulets and so he was some kind of nurse. And he insisted on being called Mr. Mr B. I won’t say his full name. “You call me Mr B, I’ll call you Raymond or Andrew or whatever I like.” And “I’m going to give you this injection. If you don’t come with me and drop your trousers so I can give you the injection, I’m going to call the crash team out, who will hold you down and give you the injection.” And this coming from a [forensic hospital] trained teddy boy in an era in 1974 when I’d become associated with peace and love, and I’d sort of gone through the you know, sort of hippy if you like phase and I thought it was all peace and love and it’s all energy man and things like that. And you know, but to be confronted with a [forensic hospital] trained teddy boy, was pretty intimidating, especially when he could call on a crash team, to come out, if there’s a slightest sort of bit of doubt, and who would delight no doubt in dialling that number from the ward phone and getting the crash team, and holding you down and injecting you. So that’s what the staff were like. 

Andrew has been taking olanzapine for the last ten years and doesn't experience any of the sedation or restlessness that he used to have when taking another medication.

But for me I was glad the asylums were closed down, and I’ve not been an inpatient since the asylums were closed down. And the last time I was an inpatient was in 1991 at [name of asylum] near [place] and I managed to negotiate with the medical staff there that I wouldn’t have medication by injection. I negotiated that I would have medication by tablet. I have been taking my tablets every day since 1991. In recent years, about the last ten years, I’ve been on atypical medication. The one I have been on is something called Olanzapine. It’s got even less sedative effects than the Largactil and Stelazine I was last discharged on. As far as I know, because I don’t have a lot of insight into my mental illness I haven’t been acting in a psychotic or paranoid way. I feel quite happy and content and I don’t have any unhelpful feelings that say, ‘the Russians are coming’ or that the ‘IRA are lurking around Kentish lanes, trying to do something against the Archbishop of Canterbury.’ I don’t feel there’s signalling going on, signalling go on to spy satellites or by Morse code or anything like that. I used to have those thoughts and they’re very unhelpful. I don’t have any of those thoughts today and I have had those kind of thoughts for nearly fifteen or twenty years. That’s due to the therapeutic effect of the tablets which I will accept. And as I say for the last ten years or so, I’ve been atypical medication and the one I’ve been prescribed is Olanzapine. And I’ve got no objections to taking it. Each day is the same. You know, I mean I don’t have restlessness or extreme sedation.

Andrew describes how his pain was badly managed after he lost a limb, so he self-medicated with cannabis.

And when I was starting to waste my money on drugs. Which I think will be quite evident to people at the university, people in my hall of residence, people in my teaching department. I think they’d have known that you know, I was taking a lot of drugs. And also I wasn’t turning up for lectures. I wasn’t turning up for seminars even. At one point I think my programme in my second year at [place] University I had two engagements a week. I think that’s one lecture and one seminar. I didn’t even go to them. And when I did go, I felt very paranoid. I felt paranoid being on buses in the town centre. Because I’d been smoking drugs. I was given no support with the psychological effects of losing my leg and things and also I had a lot of pain, lack of mobility with my leg, and I could have turned for help.

 

I mean I’ve heard of people with artificial legs who are on a maintenance dose of morphine even you know. I mean I could have sort of had some sort of help. Instead I did it illegally and you know, drugs subculture. I got paranoid and I failed my finals that just decimated me you know