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

Posted on August 15, 2012 by Kate B

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.

Targets for reforming disability living allowance

Posted on August 2, 2012 by Kate B

Can’t exactly see a fair process being rolled out here….this Treasury paper strongly implies that the 20% cut in DLA expenditure that the government expects to achieve by phasing DLA out was drawn from results of the existing, and flawed, work capability process.

From Treasury 2010 budget costings documents (see page 36)

Reforming disability living allowance –

Measure description
This measure will introduce an objective medical assessment and revised eligibility criteria for both new and existing working-age claims for Disability Living Allowance, to be rolled out from 2013/14. The assessment will follow a similar process to the Work Capability Assessment (WCA) used for claims to Employment and Support Allowance, with a points based system to assess eligibility to the different rates of the benefit.

The cost base
This costing uses the same caseload and expenditure projections used in the main social security forecast.

Costing
Drawing on the evidence of the impact of the WCA, the central assumption for this policy is that it will result in a 20 per cent reduction in caseload and expenditure once fully rolled out. It is assumed that existing claimants would be reassessed over three years, with 25 per cent of the caseload reassessed in the first year, 75 per cent by the end of the second year and 100 per cent by the end of the third year.

Touchstone blog from 2010 on that 20% cuts figure in DLA here.

Work capability assessments: judicial review

Posted on July 29, 2012 by Kate B

Short post by me at the New Statesman today on the High Court’s granting last week of a judicial review into work capability assessments.

Judicial review: Atos and work capability assessments

Posted on July 26, 2012 by Kate B

Update Thursday 26 July 11am: DPAC has emailed to say a judicial review against WCA has been granted to the applicants from Mental Health Resistance discussed in the post below.

Full press release is now on DPAC site here: “Thursday, July 26, 2012: The High Court has today granted permission to two disabled people to bring a claim for judicial review against the Secretary of State for Work and Pensions to challenge the operation of the Work Capability Assessment (WCA).”

Update 22 July: heard last week that an outcome from this application for a judicial review isn’t expected before 23 July – so we might hear something this week.

Post updated 30 June 2012 to add video

The post below was first published 29 June 2012:

Short post on today’s (29 June 2012) hearing on an application for a judicial review of the controversial Atos work capability assessments:

Went down to the Royal Courts of Justice this morning, where an application had been made by members of the Mental Health Resistance Network for permission for a judicial review of the work capability assessment process.

A judge was deciding whether or not people with mental health issues should be able to apply for a judicial review of the WCA process.

Adam Lotun, press spokesperson for Disabled People Against The Cuts, said that Employment and Support Allowance work capability assessments had developed “into a vehicle that is being used to deny people [with disabilities] their rightful access to funding and resources to assist them in their day-to-day living.”

He said that the other reason for seeking the review was to stop the same damaging process being used to assess people on disability living allowance as DLA is phased out and replaced with the personal independence payment – “we want to stop the killing of the disability living allowance.”

“These (benefits) were brought in to ensure that people of all different levels would be able to get access to funding, or resources, to enable them to cope and exist with the rest of society. Well, now that’s being taken away from us.”

Claimants argue that the work capability assessment process discriminates against people with mental health issues.

Result from the end of the day:

Adam Lotun texted to say that:

“The judge will give a decision early next week. In closing remarks, the judge said that this is something that involves hundreds and thousands of people,” and that there was concern that people would ultimately fill the court system with individual claims.

Interesting link: How times change. The Conservatives introduced Disability Living Allowance.

Other posts:

Mental Health Northeast survey finds that Atos work capability assessments are having an extremely detrimental effect on people with mental health illnesses. MHNE released some of the survey results at a Hardest Hit conference in Newcastle earlier this month.

MHNE chief executive Lyn Boyd said the organisation decided to run the survey because:

“A lot of our member groups were getting in touch with us and saying that they were really concerned about the people they’re working with and the impact that this [Atos work capability assessments] was having on them.

“And individuals that didn’t belong to any organisation – they were getting in touch with us in very distressed states, not knowing where to turn where to go for help and really just being very distressed – not feeling up to coping with what was happening. So, we wanted to see how widespread the problem was. We wanted to see what effect it was having on people’s social lives, their housing, their mental states.”

Comments from survey respondents included:

“Medical evidence was routinely not sought when needed and often little consideration was given to it when received.”

“It is only at the [work capability assessment] appeal meeting that mental health concerns were taken into account. There was too much focus on physical elements of a person’s illness – for example, questions like: 1) can you walk in a straight line 2) read these words 3) [do you have] any injuries.”

A man called Steve_ (am withholding his name, because he has further WCA sessions to take) has schizophrenia. He said this at the Newcastle Hardest Hit meeting:

“I got five points [at my first work capability assessment] when I needed 15 [text changed after publication – initially said for support group]. The second time – I got none. This time, I felt well enough, with the help of the community mental health team, to go through an appeal… then I lost the tribunal. It took a year, which made me feel worse anyway.

“Then I went on Jobseekers’ Allowance, because the community mental health team said – okay, you’ve recovered sufficiently. You don’t need our help. I think it was to do with the cuts – they couldn’t provide the service. Six months after being on JSA and not getting anywhere fast…I’ve been telling my GP to refer me back to the CMH team, because I’m getting worse….I’m telling you – it’s getting worse.”

People on the frontline of austerity Britain. Part two: the Southwest

Posted on July 16, 2012 by Kate B

Extracts from this article are printed in the Guardian today (18 July).

This is the second article from my series of interviews with people around the country who are affected by this appalling government’s welfare changes, NHS reform and cuts. This report is from the southwest.

The interviews from Weymouth are with a group of older men who were in and out of homelessness and battling to keep their jobseekers’ and employment and support allowances.

The names of people on jobseekers’ allowance or ESA have been changed and marked *. Most of these people were going through Atos work capability assessments and were concerned that the mere act of giving interviews would be construed as fitness for work. There are accompanying audio recordings.

There is also a list of policy changes and cuts which affect each person at the end of each section.

———————–

Weymouth, May 2012

Olympics 2012 costs-in-austerity controversies:
Stone mushrooms cost more than £330,000.
Local hoteliers fear thousands in losses during the games
Sandcastle costing £50 00 demolished

Weymouth pier

Image: Pier at Weymouth, May 2012.

Of all the cowflop that David Cameron speaks, there is no bigger pile than his deceitful and misleading “culture of entitlement” line on people on benefits.

Lives on benefits are not, as Cameron would have us believe, simple and sorry stories of unreal “expectations” from people who believe “the state will support you whatever decisions you make… you can have a home of your own… you will always be able to take out, no matter what you put in.”

It’s one of modern politics’ most loathsome sells: this notion that people who need state support hold any cards, let alone all of them. The idea of a culture of entitlement is entirely romantic. There’s nothing left for anyone to feel entitled to. No aspect of taking state money in this day and age is painless, or liberating – except, perhaps, if you’re a bailed-out banker.

For the rest, a life on benefits is an appalling tale of financial and personal reduction, particularly when you’ve no hope of buying yourself back by finding a job. You must have the state in that case. You can’t do without it. Your desperation, though, means that the state also has you.

I’ll give you an example of this reduction from Weymouth. It will sound tiny, but it wasn’t. It’s probably common, but it wasn’t insignificant. At the time, I was worried – I thought there was a chance that I may have put someone’s benefits in jeopardy. It was probably a small chance, but the thought did occur to me.

It all started merrily enough. I was horsing around in a carpark with Sean Needham* (in his 50s and made redundant from a Woolworth’s warehouse when Woolies went bust), Pete Gyte* (ex-armed forces), Mike Gale* (also ex-services) and H*, Mike’s cheerful, turbo-charged, Alsatian when Needham made a sudden decision.

He invited me to the next meeting of the job club that the men said they had to regularly attend as a condition of collecting their jobseekers’ and employment and support allowances. All three men were in their late 40s, or early 50s. All were unemployed and all had been homeless from time to time over the years.

Nobody seemed entirely sure what the job club was for (“we’re supposed talk about getting work and CVs,” Needham said, vaguely), but they could see two clear advantages to it for me.

The first was that they thought it would give me some insight into the hoops they had to jump through to keep their benefits and/or find employment in their challenging patch. Employment rates in the southwest are among the country’s best, but unemployment has been on the rise. If you’re a drug addict, or an alcoholic, or have serious mental health problems, or a history of homelessness – well, the guys said that it might happen, but it might not.

“I mean – come on,” Gyte said when we touched on the topic. “They reckon everybody’s fit for work, but if I had a company, most of the people I know – I wouldn’t let them in the door! Operating expensive machinery…?”

The second was that there was a sex shop somewhere along the way. There was no real advantage to that news, I suppose, except that it made us all incredibly funny for the rest of the night.

“You can get a pair of knickers first!” Gyte giggled.

“No crotch for me,” I said, which was, obviously, hilarious. The entire conversation seemed hilarious – a whole lot of giggling and snorting about David Cameron, Tories, government, CVs and dildos. Continue reading →

Government mismanagement of these flagship (welfare) reforms is a complete shambles

Posted on June 26, 2012 by Kate B

This morning, the High Court in London is hearing a challenge on the legality of the government’s now-legendary, and legendarily shambolic, workfare schemes.

This is a short report on the statements that one claimant, Cait Reilly, and her lawyer Tessa Gregory made before they went into court this morning.

There’s a video and full transcript from their statements below.

Cait Reilly and a claimant who was not named are challenging two workfare schemes. One is the sector-based work academy scheme (Reilly). The second is the community action programme (the unnamed claimant).

Say Public Interest Lawyers (who are representing the two claimants): “If it succeeds, the court will quash the regulations[1][1] under which the schemes are made and Iain Duncan Smith, the Secretary of State for Work and Pensions, will be sent back to the drawing board.”

Here’s hoping.

From Public Interest Lawyers again:

“Cait Reilly participated in the “sector-based work academy” scheme against her wishes. She was forced to leave her voluntary work at a local museum to work in Poundland stacking shelves for two weeks.”

“The second claimant refused to participate in a scheme known as the “Community Action Programme” when he was told that he had to work cleaning furniture without pay for 30 hours per week for six months. No detailed information or guidance was provided to him about the scheme itself and he has recently been informed that he is being stripped of his jobseekers’ allowance for six months because he refused to participate in the scheme.”

Said Tessa Gregory this morning:

“The government’s mismanagement of these flagship reforms has reulted in a complete shambles, where nobody understands the plethora of very different schemes that have been created and where the only ones benefiting are the companies receiving free labour. Nothing has been done to improve the employment prospects of our our clients.”

Indeed.

(Have spelled “qualifications” incorrectly in there somewhere).

Full transcripts:

Tessa Gregory (Public Interest Lawyers):

“Today, we’re asking the high court to quash the regualtions under which the government has made many of its back-to-work schemes. We represent two clients who have been subject to two very different schemes under the same regulations.

Cait will speak about her experiences.

Our other client, a qualified mechanic, under a scheme known as the community action programme, was required to work unpaid cleaning furtniture for 30 hours a week for six months. The scheme was not once properly explained to him. While he desperately wants to find work, he objects to doing unpaid work which is unrelated to his qualifciations and which will not assist him in re-entering the job market.

He refused to participate and as a result, has been stripped of six months benefits of jobseekers’ allowance.

Continue reading →

Mental health illness and failing work capability assessments

Posted on June 20, 2012 by Kate B

This is a post in progress which I’ll be adding to, so there’ll be changes/additions/updates etc:

A couple of months ago, Mental Health Northeast (an umbrella group which represents about 340 voluntary and community groups for people with mental health illnesses in the northeast) ran a survey to collect information about the experiences people with mental health problems were having as they went through Atos work capability assessments.

At a recent Hardest Hit meeting in Newcastle, MHNE chief executive Lyn Boyd, who ran through some of the survey’s first results, said the organisation decided to run the survey because:

MHNE is still analysing responses from their questionnaire and writing a final report, but they sent through some information. They say the responses represent the experiences of about 200 individual service users.

They report that 99% of respondents reported that their work capability assessments had a negative impact on them, their families/carers and their recovery. Many mentioned despair, outright trauma and suicidal thoughts.

About 85.7% of respondents felt that no notice was taken of medical evidence submitted in support of their employment and support allowance claim.

Other comments from respondents include:

“Medical evidence was routinely not sought when needed and often little consideration was given to it when received.”

S_ (am withholding his name, because he has further WCA sessions to take) has schizophrenia. He said this at the Newcastle Hardest Hit meeting:

“I’m going back to Atos in the next few weeks and what Lyn has been saying – I fully concur with all of that. They don’t listen to anything to do with mental health. They’re not trained. They don’t listen to your GP at all – they barely look at your medication prescriptions. Basically, if it wasn’t so tragic, it would be an utter laugh, but it’s just the fear of going through that process again without any help and at the moment, the GP and CHM are arguing [about] whether I’m going to get that help, but they’re not with me every night when I get the schizophrenia coming back, so really, I’m basically between a devil and the deep blue sea all the time and it’s going to get worse.

“It’s tickboxes and if you don’t fully satisfy most of their criteria, you get nowhere and that’s what I found all the time and basically it’s a very very bad system.”

Other comments from survey respondents include: Continue reading →

Turned down for Disability Living Allowance before applying for it…?

Posted on June 14, 2012 by Kate B

…in a manner of speaking.

Here’s a short and disturbing story (very likely a common one, too – there are many reports of similar situations around):

At a recent Hardest Hit meeting for people with disabilities in Newcastle, the woman* in the video below (who describes herself as severely to profoundly deaf and whom I talked with at some length after she spoke at a Local Cuts session) said she’d been told by her welfare rights advisors to expect her application for Disability Living Allowance to be turned down on first application.

She says in the video:

“What I find incredible is now is that I’m being told by professionals – “Well, you’ve got that far [completed an application form for DLA] but expect it to be turned down. That’s normal. You know, you’re going to have to go to appeal.””

She wasn’t sure what sort of hint she was supposed to take from this – either, that she wasn’t eligible for DLA at any rate (although she wondered why she’d be encouraged to apply or appeal at all if that was the case), or that the application process is now so stringent that many applicants are failed on first application as a matter of course (“that’s normal”) and their only hope lies in the second part of the process – appeal. That makes the application process even more complex and even more drawn-out and likely deters people from pursuing their claims. Already, this woman is worried about it, as well she might be. Continue reading →

Disability hate crime, The Sun and the hardest hit

Posted on June 13, 2012 by Kate B

Article from me on disability hate crime and the entitlement of lefties and everyone else to criticise media campaigns on benefit “fraud” if we feel like it.

US women in workfare talk about their lives

Posted on February 14, 2012 by Kate B

My latest article on the US workfare experience: US workfare workers talk about benefit sanctions and the problems they have finding ongoing paid jobs while on the New York City work experience (workfare) programme. There are warnings here for us – this is the sort of failed welfare-to-work programme Iain Duncan Smith is implementing in the UK.