Schizophrenia, little support and fit for work that doesn’t exist

This is another transcript from my interviews with people who are dealing with cuts and welfare reform.

This transcript is from a recorded discussion with S_*, who is from Newcastle. Now in his 50s, S_ was diagnosed with schizophrenia nearly 30 years ago. He says that his symptoms – depression, and auditory and visual hallucinations – are getting worse and cuts to services mean that he is struggling to find counselling and the regular support he needs to function. This week – several weeks after his latest work capability assessment with Atos – he was found fit for work (this recording was taken before his latest assessment). He talks a lot about isolation and is especially concerned about finding and keeping a job without regular professional support.

“About 30 years ago, I was diagnosed as schizophrenic. I couldn’t talk to people, including my own parents, about things that were worrying me, particularly socially, and at the first school I went to, I was told that I was a waste of space and I got bullied. In the end, my parents ended up calling in the emergency doctor and then they called in a friend of theirs who is a doctor. He advised them to get a psychiatrist he knew.

“I was given massive injections and the next thing I knew, I was on my way to the hospital. That was just before my first attempt at college and final year exams and that was stress anyway. I was in there for one and a half weeks and came back to do the last exam, but I didn’t do that, because it [the schizophrenia] started to kick in again as the effects of the medication wore off.

“Things have got better in some ways since then, but they’re not brilliant. I do have suicidal thoughts and I get really depressed, but I usually manage to talk myself out of it. Also, I made a promise to a psychiatrist as well when I was in hospital that I wouldn’t do anything stupid, but I find it very hard. I tell people that I’m a member of society, but I feel on the fringes of it, as if I’m an outlaw and not in the mainstream.

“Yes, I do hallucinate [especially at night]…I see things like giant squid and things like that…I think I’m being eaten alive…. the drugs, the Sulpiride I take, it’s got quite bad side effects in that my limbs shake every night when I go to bed and keep me up half the night anyway.

“It has basically gone on since I was 18, if not before. I’ve coped reasonably well, but there are limits to things I can do and to the desire to do them and the motivation as well. I mean, when I get tired and run down, that’s when things can kick off again.

“When I first got out of hospital, when I was 18, I was given a job by my dad, so that he could look after me day to day and see how I was doing. Since then, I have either worked part time, or gone into full time education, or basically been on training schemes, or been on the welfare state. The labelling [as someone with schizophrenia], I think stigmatises and discriminates against you in the minds of employers.

“I’m in my 50s anyway and that’s another thing against me…and what it has meant is huge great holes in my CV which have been covered by little bits of volunteering. I can’t do really physical stuff. I don’t drive because of the medication and both prescriptions say don’t drive or use machinery or use alcohol if at all drowsy. Also, the schizophrenia means that I’ve got thought disturbance, image disturbance, particularly at night.

“I’ve been on this medication since 1998. I got recommended to go to university – the university, thank god, picked me up through student services and gave me counselling every week and gave me help to write essays. Otherwise, I wouldn’t have got my degree. But I’ve rarely seen psychiatrists since 2004 and when I was at K_, the most concerned they seemed to have been was about whether I was going to use a chainsaw or not. After that, it seemed to be a succession of different psychiatrists every time who seemed to just want to go back into the past – what medication you’re on and so on.

“The community mental health team is overwhelmed…I’m not as ill as others, I acknowledge that, but I do think that I need some help and I get very little. I’ve had to fight for what I’ve got so far, even when I’ve had a relapse and the police have been called and things like that.

“Here, you have got to go through your GP to get a meeting with a psychiatrist…I was originally referred to the cognitive behavioural therapy team. They didn’t want to know, because I had a diagnosis with schizophrenia, so they sent me back to the GP. They sent me to the community mental health team and they originally didn’t want to know and I went back to the GP again and on the second time of asking, they took me seriously. It’s taken eight months of being messed around and of getting worse and worse and feeling more anxious…

“Originally, I was on income support with an incapacity element – this was years ago, so my memory is slightly faulty. This will be my third Atos assessment. I know people who have had four or more over four years – one a year basically and tribunals as well and still been asked back..

“I got a work capability assessment under New Labour back in 2008 and I treated it like a job interview, because I didn’t know what to expect. There was nothing in [my town back then] to advise me and the job centre would have just been a joke. I didn’t know about the disability forum, which was just starting out on this thing. The whole system has become more onerous since the coalition got in and I’ve been yo-yoing between jobseekers’ and employment support allowance. If there’s someone who has asked me to do something, someone in authority, I usually try and do that thing even if I know it is going to hurt me or make me stiff. I usually try and do my best. And that’s what they are counting on – people not knowing the system.

“I would like to see someone to talk to on a regular basis, just for motivation and reassurance. And to be able to have enough a personal budget to employ someone like a gardener and a cleaner because I’m conscious of the fact that the neighbours have done most of the garden and I find mowing the lawn very hard – not just physically, but mentally – getting round to it and doing it. Also, just someone to pop in on a fairly regular basis, just once or twice a month, just to see how I was doing.

“I’d also like a psychiatrist just sort of in the background in case things get worse, but I find that making appointments with the doctor just horrendously difficult. You can’t always get an appointment straight away and frequently, I need one pretty quickly.

“I’ve got a two bedrooom house, but it’s it’s in need of a clean. You know, I’m not very good at remembering to do things like the dishes and clothes washing on a regular basis.

“Having the ESA/JSA is very important. I still get help which is organised by my family, but that’s to pay the bills. It’s never been good since the new government come in and made the conditions harder and harder. You’ve got to jump through more hoops to justify yourself and you’re looked upon as a scrounger and people ask why you’re not working. They just don’t seem to have any idea what it’s like.

“At my second Atos appointment, I didn’t go with anyone. That was a mistake. I’ve learned now. I got help to prepare all the documents and that sort of thing with the disability forum here and I was told what to take. I have done [the same] this time as well, but the first one I did, I had no idea what to expect and no idea about anything – no idea about medical evidence. I thought you took a note of what your GP said, but they seemed to ignore that, so that’s why I’ve made a point this time of getting back to the community mental health team and secondary services because I think they might pay a bit more attention to them than to a GP.

“The way I feel varies. Some days I just can’t be bothered to get out of bed – I just feel so low. Sometimes, that goes and I physically can’t get out of bed. Even the GP reckoned years ago that I couldn’t handle stress very well, so he was very surprised when I went to university. I always got a bit of extra time, because they were very good – they acknowledged that I had difficulties and they worked around them. I just wish employers would, because I reckon that I’ll be found fit for work again. It’s got to be limited – it’s got to be limited travel, no more than 20 hours a week and less than an hour a day travel, but beggars can’t be choosers, I’m afraid.

“I think I’ll need a bit of advice after [his next work capability assessment], to see what I’m going to do – whether I’m going to appeal. I certainly will if I get no points at all. I need 15. If they say there’s nothing wrong with you, I will appeal, but if they say there is – you have got this health issue but we can work around it, I’ll probably go to the disability employment advisor again. I’ll have to go through jobseekers’ again. Otherwise, I will appeal for my employment support allowance if they say there is nothing wrong with me.

“I just think that the whole welfare state and people who depend on it are being attacked wrongly and the elite bankers are getting away with it – fraudulent things, but getting a mere slap across the wrists and I think it’s totally wrong, it’s immoral. Neither New labour or the Tories are going to rapidly change this. There’s one law for the rich and one law for the poor and I just happen to be in the second bracket.

“I would hate to think where I’d be in six months’ time without support. I think I would be back in hospital at the very least, if not on my deathbed. It’s been a constant struggle anyway, with what limited support I get and I’m trying to get more, but if I didn’t have what I’ve got I think it’d be even worse and I think I’d be on far more medication.

“The help I’ve got at the moment – well, I come here [to a voluntary support organisation for people with mental health problems] as often as I can. I go and see my GP when I think I need to, but that’s difficult, trying to get an appointment. I want to be able to almost on a switch of a button talk to someone, but you’ve got to plan it and even then, there are lots of other people with other problems trying to access their GP as well. I think I need a visit from a carer, or a social worker, a couple of times a month just to see how I’m getting on, but with these cuts I don’t think I’ll get that. And as I say, a fairly regular meeting with a psychiatrist, or a self help group.

“The report I got back said that I am a very passive individual. I thought – oh what else? Then it went through the descriptors and it was like – none of this applies sort of thing and that’s the reason that I appealed. I eventually got to the tribunal and during that wait, I was getting worse.”

*Name withheld.

Other articles: people with mental health illnesses win judicial review of work capability assessments.

10 thoughts on “Schizophrenia, little support and fit for work that doesn’t exist

  1. Pingback: ‘#Schizophrenia, little support and ‘fit for work’ that doesn’t exist.’ #ukmh #mhuk | Dawn Willis sharing the News & Views of the Mentally Wealthy

  2. Pingback: Anonymous

  3. Pingback: Mark Hoban, work capability assessments and mental function champions | Kate Belgrave

  4. Pingback: These people are not shirkers | Kate Belgrave

  5. Pingback: These people are not shirkers (cross/re-post) « Launchpad: By and for mental health service users

  6. Thank you for taking time to place this transcript online. I am in a very similar situation. My graduation is in September and after that I will have to either go on JSA and look for full-time work (which I am not really fit to do; the level of stress caused to me by being in a full time job triggers dissociation episodes and depression. Shortly after I start any job I become severely depressed and usually have to take a sick leave. My concentration is so low that I make dangerous mistakes. As a schizophrenic I don’t communicate clearly with my work colleagues who quickly identify my weakness and start to bully me. I however do ok when allowed to only work about 16h/week. This is however only possible with the income support otherwise 16h a week at nmw does not suffice to even pay for accommodation and bills; forget food, visits to a dentist or any other necessary things. I am seriously worried that I won’t be able to get the income support and will have to go on to look for a full-time work where I will be subjected to bullying and made to leave due to sickness again.

  7. Pingback: Mental health, Falkirk and the diversions of the political class | Kate Belgrave

  8. Pingback: Mental health, Falkirk and the diversions of the political class by Kate Belgrave | Launchpad: By and for mental health service users

  9. Pingback: Expendable people – a list | Kate Belgrave

  10. Pingback: Very harsh system, this: mental health problems and found fit for work | Kate Belgrave

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.