Posts Tagged ‘Fibromyalgia’

Handbook of Disability History in Latest Oxbow Book Catalogue

March 31, 2019

I got the latest issue of Oxbow Book News, for Spring 2019, through the post the other day. Oxbow are specialist booksellers and publishers for archaeology and history. The Book News is really a catalogue of what they have in stock. And in the latest issue was The Oxford Handbook of Disability History, edited by Michael Rembis, Catherine J. Kudlick and Kim Nielsen (Oxford: OUP 2018). The blurb for it in the catalogue runs

Disability history exists outside of the institutions, healers, and treatments it often brings to mind. It is a history where the disabled live not just as patients or cure-seekers, but rather as people living differently in the world. The Oxford Handbook of Disability History is the first volume of its kind to represent this history and its global scale, from ancient Greece to British West Africa. The twenty-seven articles, written by thirty experts from across the field, capture the diversity and liveliness of this emerging scholarship.

Unfortunately, this book is going to be well beyond most people’s pockets. It’s hardback, and the listed price is £97.00, which means that it’s only really going to be affordable to the very affluent. On the other hand, you might be able to order it from your local library, assuming that the Tories haven’t shut it down already.

What is interesting is what its publication on its own says about this as an emerging area of scholarship. It says that the history of disabled people themselves is coming to be recognised as a field of historical research and endeavour by itself, alongside other disciplines in social history like Black, women’s, and gender history. It’s possible that this is part of a change in general cultural attitudes towards the disabled, in the way that the Black civil rights and feminist movements directly caused the emergence of Black and women’s history. Unfortunately, despite this apparent change in academic attitudes, popular attitude towards people with disabilities still has some way to go. We still have the Tories closing down services for disabled people in the name of austerity, efficiency and all the hypocritical cant about concentrating resources where they’re really needed. And we still have the wretched Tory press and media demonising them as welfare scroungers. A week or so ago Zelo Street put up a post about the Spectator’s Rod Liddle attacking people with ME as malingerers, who didn’t have a real illness. To which the answer is, no, Rod, it is, they are, and you’re a soulless Murdoch hack. This wasn’t the first time he’s taken a swipe at the disabled either. A few years ago he wrote a piece about how he’d like to get a disability, that would allow him to get off work without really being disabled. Once again, he went for ME and fibromyalgia. I’ve known people with ME. They’re not malingerers, and it’s a real illness which leaves them wiped out through chronic fatigue. And it’s a long time since doctors seriously doubted whether it really existed. I think that stopped with the end of the 1980s. But obviously not in Liddle’s squalid excuse for a mind. And if you need convincing that fibromyalgia is a real disease, go over to Mike’s blog and look up some of the posts, where he mentions the suffering it’s caused Mrs. Mike. This is real, genuine pain, and definitely not imaginary. Unlike Liddle’s pretensions to objective journalism.

This looks like it could be a very interesting volume. It’s too bad it’s price puts it beyond the reach of most of us. Hopefully this will lead to further scholarship, some of which will be aimed at a less restricted audience beyond academia, and will be at a more affordable price. And I hope some of it is also taken up by activists, who use it to challenge the assumptions of Liddle and the rest of the close-minded bigots in the right-wing press and Tory party.

Advertisements

Meme of Fibromyalgia in America

December 3, 2015

This is for Mrs Mike, who I believe suffers from fibromyalgia. I found it on the Tumblr site, 1000 Natural Shocks, at http://greybeard55.tumblr.com/image/134338798270. Warning! The site also contains – ahem – ‘adult’ material, so it’s over 18s only.

Fibromyalgia Tuesday

Private Eye on ATOS’ Incompetence Running PIP

October 17, 2015

Private Eye in their edition for the 4th to 17th September 2015 also carried this report about ATOS’ continuing abysmal performance, this time in administering the Personal Independence Payments introduced by the Tories.

ATOS
Wait for the PIPs

Outsourcing giant Atos no doubt thought that pulling out of its contract to carry out the governments “fitness for work” benefits tests would draw a line under five years of bad publicity over its pisspoor performance.

But last week the Department for Work and Pensions was finally forced to reveal figures showing that about 90 people a month were dying with 14 days of being declared fit to work under Atos’ watch. And now the claims of poor practice have shifted to the way Atos assesses some people for a different disability benefit – the new personal independence payment (PIP), which is gradually replacing disability living allowance (DLA).

In July the Disability News Service revealed that in parts of the country where Atos was running the PIP show, the proportion of disabled people stuck in the queue for an assessment was more than five times higher than in areas managed by rival Crapita. Now people who have managed to be assessed by Atos claim they have fallen prey to inaccurate and misleading reports that affect their benefit claims.

Colin Stupples-Whyley, for example, says an Atos nurse wrote that he had attended the PIP assessment alone – even though his civil partner sat with him throughout the interview. He was only able to prove he had not been alone because his partner had signed in to the Atos visitor book.

Mr Stupples-Whyley has agoraphobia, general anxiety disorder, depression, fibromyalgia and diabetes, but the impact of these impairments was he says, ignored or misrepresented by the Atos assessor. The assessor wrote that his mental health conditions had ben diagnosed by a “counsellor” when in fact he was on medication prescribed by a psychiatrist; his long list of diabetes symptoms was reduced to “urinates a lot”; and a panic attack during the assessment was not recorded. Mr Stupples-Whyley claims the entire section of the form devoted to a physical examination supposedly carried out by the nurse was fabricated, as no test took place.

This is remarkably similar to the experience of Colleen Hardy, who also has several chronic physical and mental conditions. She was able to prove that the Atos physiotherapist who assessed her (this time for the old fitness-to-work test) had inaccurately reported she had climbed a flight of stairs without help and by holding on to a bannister, because she was actually helped by her community psychiatric nurse and a friend! Different benefits, but same old Atos story.

* Mr Stupples-Whyley so distrusts Atos he has turned down the offer of a reassessment and is taking his case to a tribunal.

As the Eye itself points out, this is merely case of Atos carrying on as they always have done. Only the benefit they administer is different. Atos’ cruel attitude to claimants and their determination to declare everyone ‘fit for work’ is satirised in this cartoon on page 27 of the same issue.

Atos cartoon

If you can’t read it, the speech bubble from the doctor says ‘See? I knew you could crawl if you tried… I’ll call the mushroom farm’.

Atos aren’t quite that bad, but there’re extremely close. The mobility test does involve the patients’ ability to walk a minimal number of yards, and there have been cases where wheelchair users have been told to come to offices on the upper floors of buildings for their assessment without adequate wheelchair access. And the above article describes how they were determined to find Colleen Hardy able to walk, even though she needed to rely on the assistance of a nurse and a friend.

Atos, however, shouldn’t take all over the blame. They were hired by New Labour to find a set proportion of people fit for work according to the Neoliberal ideas coming over from Bliar’s friends in the big transatlantic corporations. And New Labour’s involvement in no way exonerates the Tories. Bliar in many ways simply carried on the Thatcherite project, which has in its turn been carried on and massively expanded by Cameron and IDS. The whole system is rotten and desperately needs to be changed. A good start would be by sacking Atos, Crapita, and the old charade of fitness to work assessments.

George Berger on Gordon Waddell and the Origins of the Work Capability Test

February 9, 2015

A few weeks ago I blogged about a piece on Mike’s site, Vox Political, by Mo Stewart describing Unum’s role in formulating the fitness for work test. This is the prize piece of pseudoscience used by the DWP and Atos to deny people welfare benefits on the grounds that, no matter how ill or disabled they are, they are still somehow ‘fit for work’. In the most extreme cases, this has resulted in terminally ill people having their disability benefit removed and blandly informed that they will have to be reassessed. Just in case, you understand, that they get better.

One of the commenters on the piece was George Berger, who kindly informed me of his piece on the DPAC website tracing the origins of the fitness for work test in the bizarre theories of Gordon Waddell. Mr Berger commented:

It seems that the historical source is Waddell’s work on back pain and non-organic signs. That was imaginatively extended to “invisible illnesses.” The back pain work was heavily criticised by medical people in his specialism, yet he seems to have been protected by Aylward and maybe others. I did not know about the purely medical critique when I wrote this.

http://dpac.uk.net/2014/09/gordon-waddells-biopsychosocial-attack-on-disabled-people/

As you can see from the link, it’s entitled Gordon Waddell’s Biophysical Attack on Disabled People.

Gordon Waddell was a highly respected orthopaedic surgeon, who drew on George Engels’ holistic theories of the origin of disease. Engels believed that for patients to be made better, the healer should address all aspects of their condition, including its social and psychological components. Waddell, however, perverted this into the current government policy that sees patients as essentially malingerers. In his papers ‘Nonorganic Physical Signs in Low-Back Pain’ (Spine, volume 5, number 7, 117-125); and ‘A New Clinical Model for the Treatment of Low-Back Pain’ (Spine, volume12 number 7, 632-644), published in 1980 and 1987, Waddell stated that there were symptoms in lower back pain that had no physical cause. He believed these were entirely psychological in origin. These non-organic symptoms in turn produced depression, a feeling that treatment hadn’t worked, and encouraged the patient to adopt a ‘sick role’. Mr Berger quotes from Waddell’s 1998 book, The Back Pain Revolution, ‘that illness behaviour quite often ‘focuses on money and implies malingering,’ and that it ‘may depend more on… psychologic events than on the underlying physical problem’ (1998: 216, 227).’

George Berger states that Waddell’s scientific methodology is simply wrong, and that it was strongly influenced by Skinner’s Behaviourism, which in turn has been categorically demolished by none other than that great American radical, Noam Chomsky, amongst others.

Despite its falsity, it has been seized upon by New Labour and Tory governments determined to cut the welfare bill. Waddell’s ideas on pain and malingering were taken up by Atos at a conference in 2004. Another doctor, Christopher Bass, used his biopsychosocial theories to explain chronic fatigue syndrome, fibromyalgia, chronic low-back pain, repetitive strain injury and non-cardiac chest pain, as all essentially psychological malingering. Waddell’s ideas were taken up by UnumProvident, the American insurance fraudster, whose head, John LoCascio, attended a conference at Oxford on malingering and illness deception. The corporation then set up the UnumProvident Centre for Psychosocial and Disability Research at Cardiff University. Finally, in 2006 Waddell and A. Kim Burton wrote that ‘Work is generally good for health and well-being’, a line now repeated ad nauseam by the cretins now stuffing the DWP under Esther McVile and Iain ‘Tosser’ Duncan Smith.

There’s far more over in George Berger’s original article, and it’s definitely worth reading for anyone interested in a very scholarly destruction of this pernicious piece of pseudoscience.

Vox Political: Hoax DWP Letter Sent to Mrs Mike

February 7, 2015

Mike over at Vox Political has the story about a hoax letter sent by the DWP to his partner. As readers of his blog will know, Mrs Mike unfortunately has been left in pain and unable to work by fibromyalgia. The letter told her that she had to go for an assessment by Atos. When Mike phoned up the hospital to enquire about this, he was told they did not have any appointment booked. Here’s Mike’s account:

Don’t you just hate it when you get a hoax call from the Department for Work and Pensions?

Mrs Mike had one this week, it seems – from Atos.

“Your appointment for an assessment with a healthcare professional” was the heading, beneath which were the words: “We have been asked by the Department for Work and Pensions (DWP) to carry out an assessment in relation to your benefit claim. We have arranged an appointment for you at [date and place]. It is important that you attend this assessment. If you don’t attend, your benefit may be affected.” And so on. It was dated January 30 and we received in on Tuesday (February 3).

Long-term readers will know that this writer is her carer and attended her first work capability assessment in that capacity. I wanted to do so again but on the day we had the letter I was full of a cold that has been going around, and did not feel well enough to deal with grinding bureaucrats until today (Friday).

Phoning up the number on the letter, I gave Mrs Mike’s details, only to be told that there was no appointment booked for her. The person on the other end of the phone – who was very polite and helpful – suggested that her appointment might not be for ESA but PIP, and provided a phone number so I could inquire.

Let’s cut a long story short. She didn’t have an appointment for PIP, or DLA either.

Mike points out that this makes the letter a hoax, but goes on to say that he will take her to the assessment centre at the time requested, just in case.

He goes on to state that he realises that not everyone will be able to do as he plans to do, and that for many merely going to the assessment centre would lead to acute stress. Further stress is caused by the assessment itself, whatever flannel IDS says to the contrary. For a few, this cumulative stress could damage their health, or even end their life.

Which constitutes corporate manslaughter under the meaning of the act, your honour.

Mike’s article can be read at: http://voxpoliticalonline.com/2015/02/06/dwp-appointment-hoaxes-ramp-up-stress-for-the-sick-and-disabled/

I wondered if this isn’t indeed some kind of malign trap by the DWP to try and catch Mike or Mrs Mike out. Other commenters on various blogs have told of being sanctioned for not attending appointments about which they were not informed, apparently deliberately. Could this be another ruse by the DWP to try and prove somehow that Mrs Mike, and anyone like her, is somehow malingering? Or is simply incompetence by a company that wants to get out of its contract as quickly as possible because of all the adverse publicity?

From 2011: Private Eye on the Boycott of the Paralympics because of Atos’ Sponsorship

April 10, 2014

atoskillsgraf

There was huge outrage in 2011 and 2012 at Atos’ sponsorship of the Paralympics, because of the company’s vicious, punitive and cruel treatment of the disabled claimants it assessed. Private Eye reported on this in their issue for October 28, 2011.

Paralympic Boycott

What A Bunch of Atossers …

Disability campaigners are calling on athletes to boycott next summer’s Paralympics in London in protest of the involvement of Atos, the French outsourcing company.

Atos has been slated by MP’s, charities and others over its dire record in carrying out health and capability assessments for those on disability benefits – getting it wrong in up to 40 percent of cases and causing “fear, anxiety and distress” to may disabled people. Instead of ensuring that better assessments are carried out in the first place – perhaps by ending Atos’ multimillion contract – the government is proposing to axe the benefits of anyone who challenges an Atos decision during their appeal.

One person who would lose out is Jenny, 59, who worked as a teacher in state schools in Yorkshire for almost 40 years. When her son was born with profound disabilities she worked part-time so she could care for him. But then she developed fibromyalgia, a chronic condition affecting muscles and connecting tissue, involving severe pain, fatigue and spasms.

When she became incapable of caring for her son as a young adult, he had to be admitted to a care home. She finally gave up part-time teaching in 2009 after collapsing and is now unable even to use a keyboard. Whit her GP’s backing she received some disability living allowance – until last May, when Atos decided otherwise. She is appealing an Atos doctor’s claims to have examined her and found no muscle spasms or joint swellings, saying he didn’t even look at her hands, where her swollen joints were clearly visible.

Atos claims it contract is to look at what people can do, rather than diagnosing a condition. “For this reason, a thorough physical examination is not necessarily appropriate,” it said. Whit is why, no doubt, Atos has been accused of turning down people with advanced cancers and severe mental illness – and why it loses so many appeals.
These tribunals are estimated to cost up to £50m a year – paid by taxpayers and not out of the Atos budget.

That is why Scottish-based disability group Black Triangle and others are angry that Atos is running the IT for the Paralympics. The group claims Atos decisions and actions have been identified as factors at 16 suicide inquests in recent years. Indeed, the group was set up after the death of the Scottish writer and poet Paul Reekie, who left no suicide note but instead – according to campaigners – laid out a letter informing him his incapacity benefit had been stopped.

The response of Atos to such criticism has been to resort to m’learned friends. Black Triangle said it had to relocate its web server to Iceland after its original Facebook page was closed down. Phil Lockwood of Black Triangle said: “Although we respect all those athletes who wish to take part, they should be aware that ATos may use the event as a propaganda exercise.”

I put up a later piece from the Eye yesterday about Atos, which reported that a tribunal upheld Jenny’s appeal. The appeal judges found serious flaws and inconsistencies in Atos’ account, and in the end relied on information from Jenny’s doctor instead. Unfortunately, this does not affect Atos general policy of treating the poor and disabled with absolute contempt. Stilloaks has blogged a list of 45 people – who have either taken their lives or died in misery and grinding poverty through the company’s decision to declare them fit for work. Other bloggers, such as Jayne Linney, have suggested that as many as 55,000 people per year may have died after being assessed by the company. The true figures are unknown as the DWP refuses to release them after requests have been made under the Freedom of Information Act. And the bloggers, who have tried to obtain these facts, like Mike over at Vox Political, have been accused of being ‘vexatious’ by the Information Commissioner instead.

As for Atos, I know from my own personal experience and that of the people commenting on my blog that Atos lies and distorts the truth. I’ve even reblogged a video from a nurse, who worked for the company, on the way they were told to adhere to guidelines telling them what percentage of claims should be turned down. This is disgusting, and it’s high time the whole Work Capability Assessment was scrapped.

From 2012: Private Eye on Atos and Serco as their Successors

April 9, 2014

Private Eye in their issue for the 4th – 17th May 2012 ran this article reporting further examples of Atos’ cruelty towards claimants, and expressing fears that Serco were about to step into their shoes.

Health Assessments

Occupational Hazard

Disability campaigners are alarmed to hear that security giant Serco may also be moving into the health and disability assessment market, currently dominated by Atos, the French outsourcing giant.

Serco is aiming to link up with occupational therapists to “explore” how they might do assessments usually carried out by doctors or nurses; and recently hosted a seminar at the College of Occupational Therapists. The worry is that Serco could prove even more adept than Atos at doing the government’s dirty work by slashing benefits for some of the most vulnerable people.

Although some occupational therapists hesitate to join forces with Serco, the college itself sees the move as a chance to bolster the industry. Its primary objective in dealing with commercial organisations was “to ensure that there is perceived and discernible benefit to the profession and/or better health and wellbeing service for the public”.

Meanwhile, at Atos and the Department for Work and Pensions, it’s business as usual. Last week a coroner said a decision to declare a mentally ill man fit for work may have influenced his subsequent decision to commit suicide.

Martin Rust, 36, who had attempted suicide previously, had been diagnosed with treatment-resistant schizophrenia in 1998, but was living independently with mental health service support.

He died in November last year after his mother said the pressure of finding work when he felt he couldn’t cope had been extremely worrying for him. Recording that Mr Rust had committed suicide while suffering from a treatment-resistant mental illness, coroner William Armstrong said the DWP’s decision “caused distress and may well have had an adverse effect” on Mr Rust.

There was good news, though, for Jenny, the 59-year-old former teacher, who was forced to give up work when she developed the debilitating illness fibromyalgia (Eye 1300). Her benefits were stopped last year, forcing her to raise funds by selling some of her furniture, following an Atos assessment which she claimed was “cursory at best”. A tribunal panel has now said the Atos examiner’s report was full of anomalies and is instead relying on the detailed assessment and medical history for her own GP.

Doctors are the latest to raise concerns over the tests and the fact that nearly 40 percent of assessment decisions are overturned on appeal. As well as the amount of time GPs are spending on reports for appeals, there are also concerns at the length of time people are having to live, often without benefits, waiting for an appeal – nearly 25 weeks on average.

This cast some doubt on whether Atos’ statement that they are withdrawing from administering the work capability assessments will mean any improvement, if Serco takes over them. As for Atos, this report gives another victim of the company’s cruelty and incompetence. Johnny Void, Mike at Vox Political and many other bloggers have reported doctors’ criticisms of the damage the stress of the assessments has on their patients’ mental health. This article shows they are also concerned about the sheer time their patients were left without benefits while waiting for an appeal.

As for the Tribunal rejecting Atos’ reports and relying instead on information from ‘Jenny’s’ doctor, this is very much how it should be. Jaypot has stated that if a doctor declares that someone is unfit for work, then that should be sufficient as far as further assessment is required. the Work Capability Assessment itself is seriously flawed, and in my view, a completely spurious piece of pseudoscience rather than anything resembling good medical practice.

Welfare to Work Hits Sickness Benefits

February 10, 2014

I’ve just reblogged Mike’s post over at Vox Political on the government’s plan to set up a service to the long term sick off benefit and back into work. Mike found the plans on the BBC’s website yesterday. They were also announced on the Andrew Marr Show that morning. Marr did not, however, provide any details except that it would help employees and employers get back into work, and gave the statistic of the number of days lost due to sickness. In fairness, Marr did actually say that we had the lowest rate of long-term sickness in Europe.

In my comment to the piece I’ve already stated my opinion that it looks like the government is introducing a similar scheme to long-term sickness as they have with disability and unemployment. The emphasis will be getting people back into work, regardless of whether they are fit or well, and the possible effects to their long term health. It’s supposed to be voluntary at the moment, but as the commenter’s on Mike’s blog have pointed out, this was also how Universal Jobmatch was introduced, and now it’s very compulsory if you sign on benefit. I also have absolutely no doubt that legislation will also be introduced to deprive the sick of benefit if they don’t follow the back-to-work regime offered by this private company.

And I also have very severe reservations about the competence of whichever company they choose to run this service. Atos’ questionnaire for assessing whether someone is well enough to return to work is, quite frankly, so unscientific that it my view it constitutes medical fraud. The doctors and other medical professionals that administer it are merely window-dressing. They are not required to use their own, personal medical knowledge or initiative to declare whether or not you are fit. The assessment could be carried out by an ordinary civil servant with exactly the same results. Moreover, Atos and its employees have repeatedly shown themselves to be mendacious. They have lied and lied again to meet the government’s targets for people thrown off benefits. What are the odds that this new crew will be any different? Any takers?

One of the best comments on the situation comes from Florence, who has posted this on Mike’s piece:

What about the existing “pilot” scheme that is compulsory for those claiming sickness benefits? SOund just like what they are supposed to be promoting on this “service” to the disabled and chronically ill.

https://www.gov.uk/government/news/pilot-schemes-to-help-people-on-sickness-benefits-back-to-work

The official site says:-

“People on sickness benefits will be required to have regular meetings with healthcare professionals to help them address their barriers to work – or face losing their benefits……….(they) will have regular appointments with healthcare professionals as a condition of receiving their benefit, to focus on helping them move closer to being able to get a job!

So there is a choice, – attend or starve? So no choice, then? It continues:-

“The regular discussions with healthcare professionals – which will be provided by Ingeus UK – will not replace someone’s GP, but can promote health support and help a claimant to re-engage with their GP if they are struggling to adapt to their condition. They will also signpost claimants to activities and information to help them manage their condition to improve their readiness for getting a job, and work with local services to provide a holistic approach to health interventions.”

So what will be the “help” to “adapt”?

Experience says it will be a form of crude behavioural abuse, sorry, help called CBT. We all know how the Nudge Unit has worked before in ignoring all professional standards about coercion to participate. CBT has been proven (in published MEDICAL papers) to be worse than useless for people with long-term illnesses such as arthritis, and especially fibromyalgia and other chronic immune system problems with associated fatigue, and depression. The main study showed that for the first few weeks of CBT all seemed much better in treated group but 10 months later the untreated group – who had been left to manage their own illness – were in fact much better, more able to cope with pain, and more had achieved better mental & physical functioning.

The most telling remark came from someone who had been referred for CBT for fibromyalgia (aka complex regional pain syndrome). She said that it was tantamount to physical and mental torture, and in the end she agreed to everything that she was expected to, including doing exercise programmes that were causing extreme pain & distress, just so they would sigh her off from the programme. After, she needed treatment for depression.

Crude abuse seems the right description. The government seems to have outsourced motivating the long-term unemployed back into work to various forms, which now ring them up at home to harass them, demanding to know why they have not found work. One of my friends has been subjected to this, and when he asked them what they were doing, the person at the other end of the line claimed that they were ‘motivating him’. No, it’s not motivation. It’s simple abuse. But it’s in line with a government that has no solutions except to blame and persecute the poor and the sick.