Benefit guilt

I recently wrote about my income in detail. I did so partly because the benefits that I receive were listed in a newspaper (My own fault) without actually explaining them, and the amounts caused a few negative comments.

Since making my income public one thing that has been bothering me is that while my wife and I now receive enough money to live on and DLA to provide for the extra costs of my care and mobility, a vast  number of my friends do not. And I feel sort of guilty about that. I know that I shouldn’t, I am getting the proper benefits for my circumstances, but I feel horrible that other people – many with greater need than me – don’t get the help that they are supposed to get.

I went through a Work Capability Assessment with Atos and I was placed in the support group. I know that I am sick enough to merit ESA and DLA but it was always in doubt whether Atos would recognise that. I can’t help wondering what would have happened if my journey to the assessment centre hadn’t been so awful. (You can read about that travesty on a previous blog post.) If I hadn’t arrived shaken, stressed and exhausted perhaps my assessment would have gone quite differently – Atos have been criticised for ignoring variable health problems and could easily have judged me differently if I had appeared well that day.

Perhaps it is chance that I ended up in the Support Group for ESA rather than the Work Related Activity Group or even found fit for work. But then my DLA was awarded on the basis of the Work Capability Assessment too, even though that isn’t supposed to happen until PIP is introduced. So is that two benefits received by pure chance? Being awarded ESA helped me to get DLA and getting DLA has increased the amount that I get from ESA, and both of those ensure that I get housing benefit too. At some point I may get carers allowance although that might lower the amount that I get from ESA.

The point is, I now have enough to live on without being in poverty and always struggling to pay the bills. Many other people are not so lucky. What I really want is for access to these benefits to be available to all the other people that need it. I have so many friends who haven’t got the benefits that they so desperately need. Friends who can’t walk, or can’t get out of bed, or can’t cook for themselves. Friends who have been through the assessments by Atos and refused on absurd grounds. Friends who are in hospital near death and don’t get benefits. I was really terrified that I wasn’t going to get my ESA, and the form filling for benefits and the assessment process itself made me more stressed which led to me being more physically ill too.

Even when people have managed to get all the benefits to which they are entitled it isn’t always enough. I need relatively few adjustments to live. A wheelchair, a shower seat. Some people need hoists and lifting equipment and wet rooms and stairlifts and bigger rooms to fit it all in… and the list goes on. Of course some of that can be paid for in other ways such as from council funds or (until now) the Independent Living Fund but many people end up sorting out their own adaptions. I talked to my GP about getting an NHS wheelchair yesterday and she suggested that it would be quicker and easier to buy one for myself. (Not that I can’t try to get an NHS one.) That happens a lot with costlier items too.

Clearly the benefits system isn’t great at the moment. It’s obvious that it needs reform to solve these problems. But – and this is an important but – the Welfare Reform Bill doesn’t solve these problems. It makes them far worse. It abolishes multiple sources of funding, it cuts the DLA / PIP budget by 20% and it restricts who can get help and who will receive PIP. Government ministers have told us that those most in need will get more help. What they are less keen to tell everyone is that the extra help for those most in need is being snatched away from those who are only quite in need. If you need help but not loads of help, that’s tough. Because the government says you’re not going to get any help at all.

Channel 4 News report – The revolving door of ESA appeals

This report was shown this evening on Channel 4 news and shows the problems with the Work Capability Assessment and the appeals process for Employment Support Allowance. Skip to 8:50 for the interview with Chris Grayling.

This is the official Channel 4 video and is the same as the one above but it does not have the interview with Chris Grayling.

Conservatives: Protecting the vulnerable?

When I contacted my Conservative MP a year ago to express my concern about government policy towards sick and disabled people, he told me that “I see something different, I see the vulnerable protected.”

I still can’t see that.

Conservatives,

Your ministers and special advisers constantly give incorrect information to the press and in speeches. You give misleading statistics to the press, and you leak it in advance to press that are sympathetic to conservative policies. That leads to headlines that seriously harm those reliant on benefits. Your language is itself harmful. You talk of benefit cheats, and scroungers, and the benefit lifestyle, and yet you ignore your own official statistics which show how tiny the levels of fraud really are. You ignore the massive damage done to the vast majority of claimants by your portrayal of those forced to rely on benefits and your constant references to deserving and undeserving; genuine and fake. Rhetoric from conservatives and the press has led to an increase in hate crimes such as stoning of people in wheelchairs and verbal abuse against those who need to use crutches or walking sticks. That has directly led to many disabled people being terrified of leaving the house.

You legislate on the assumption that with mobility aids, disabled people are on an equal footing with everyone else when moving around. They aren’t. Shops have steps in their doorways. Pavements lack dropped kerbs, leaving those who are on wheels or cannot manage a change in level to make extended detours. Cars and vans are routinely parked blocking ramps and dropped kerbs. Bus drivers refuse to lower their bus to allow wheelchair users on, or pretend not to see them. Trains and buses allow only one wheelchair on the whole vehicle. Those who need an electric wheelchair for use outdoors are denied one because they have no need to use one at home. Others wait months or even years to be supplied with one.

You continue the broken system of assessing people that was introduced by Labour. The concept of the Work Capability Assessment is broken in itself as the impact of most health problems cannot be assessed in 45 minutes by a health care professional who has no knowledge of the problems that the patient has. Atos continue to recommend that people go in the Work Related Activity Group and attend Work Focused Interviews at the Job Centre when they will be seriously harmed even by attending the Job Centre, IF they manage to do so, and never mind the fact that there are no available jobs that are suitable for them and competition for the unsuitable jobs is more than five to one and up against healthy people.

You are time-limiting contribution-based ESA with no regard for the actual length of time that a person will be sick for. The prospect of losing that income causes stress and seriously damages the mental and physical health of many of those people, leading to even longer recovery times.

You are introducing Personal Independence Payments to replace DLA, but apart from assessing people more often which is highly damaging to the health of those who are permanently sick or disabled, you are reducing the budget by 20%. The costs of being sick or disabled have NOT gone down by 20%!

Conservative cuts to council budgets have come directly out of budgets for personal care. People who can barely get out of bed have been left to shop and cook for themselves; others have been given incontinence pads and told to soil themselves rather than receive help to get to the toilet, and this despite having full control over their bowels but simply being unable to walk. Forcing people to lie in bed for hours in their own faeces and urine is now conservative policy.

You reassured me that the vulnerable would be protected. You were wrong. You are attacking the vulnerable. You are abandoning those in need. Your policies leave people more sick, more disabled, blamed for needing your help. You should be ashamed.

Good news for those on ESA, bad news for the NHS

Liberal Democrat conference voted on Saturday for a motion criticising employment support allowance and Atos work capability assessments. In addition they passed an amendment to the motion which contained much more interesting statements. Page 20 of Conference Extra [PDF] gives details of amendment one for motion F6.

This amendment means that LibDems oppose limiting ESA to one year for those that have made national insurance contributions, demand that people with “serious and uncontrollable life-threatening conditions” are given unconditional support instead of having to attend work-focussed interviews, and are in favour of giving legal help to those appealing against being declared fit to work. They also want Atos to be forced to improve their performance, and in future, for the role of assessing people as fit for work or not to be carried out by government or non-profit groups.

While this has come late in the day, the Welfare Reform Bill has not yet been passed by the House of Lords and so now that the LibDems have adopted this motion and amendment I am hopeful that LibDem peers might oppose aspects of the bill that conflict with it and either amend the bill or send it back to the house of commons to start again. I don’t know how binding this motion is on the LibDem peers but their previous stance does not have the backing of the party. In fact, when this motion was voted on there were very few people that voted against it at all.

There were some excellent speeches in favour of this motion and amendment and I have uploaded some of the best to Youtube – see further down. You can also view the whole afternoon’s proceedings on iPlayer for a limited time. The motion was originally written by George Potter who contacted a few different people for help. In his speech he used Sue Marsh of Diary of a Benefit Scrounger as his main example.

However, it’s not all good news. Many LibDems wanted to debate the governments plans for the NHS in the Health and Social Care Bill, also waiting to pass through the Lords. They held a vote on whether or not to debate and vote on the bill during the conference. The vote was 235 in favour of debating it versus 183 against, but unfortunately they needed a two thirds majority to win and so the bill will not be debated. This means that the Health and Social Care Bill will still go through the house of Lords with LibDem support although it might just about be possible to stop it if all the cross-bench peers vote against.

Nick Clegg and Simon Hughes spoke during the opening of the conference and talked about opposing ruthless and extreme right-wing policies that the Conservatives are pushing through. They seem to think that they can win back support by opposing the Tories. I think they are wrong. The biggest things that they needed to stop were the cuts to welfare and the massive changes to the NHS, and before that, the scrapping of funding for universities and the introduction of huge tuition fees. I think it’s too late for the LibDems. They don’t seem to have noticed.

 

Videos from the Liberal Democrat Conference 2011 Continue reading “Good news for those on ESA, bad news for the NHS”

Atos: Why are we campaigning?

The Stream – a programme on Al Jazeera English – are covering the protests against Atos in their show this evening at 19:30 GMT. They asked me what I thought should be included.

[blackbirdpie id=”108923075919216640″]

These are the key points that I think are the problem.

  1. That Atos staff and Lima system do not adequately assess whether patients fit the descriptors as set by government, instead asking their own questions to fit their tick boxes then trying to make the answers fit the legislation set out by government. (Found at http://www.legislation.gov.uk/uksi/2011/228/made)
  2. That Atos as a private contractor is not accountable in the same was as gov, e.g. FOI requests
  3. That the whole concept of assessing patients as fit for work or not is flawed, this cannot be tested in a 45 minute session as Atos does not draw on medical history, variation from day to day, etc.
  4. Atos judge a person’s ability to walk, stand, concentrate, communicate etc on what they look like in one 45 minute session which can be very different from other times.
  5. In making the decision Atos ignore impact of work on state of health and they don’t account for the health impact of doing many things in sequence to work, just ability to do any one of those things in isolation!
  6. Asking trick questions to catch people out.
  7. Having “Medical Centres” that are not fully accessible, including centres with no lifts, no disabled car parking bays, or sometimes no parking at all, and unsuitable chairs in their waiting rooms.
  8. Frequently keeping patients waiting hours for their appointment, and observing them in the waiting room for behaviour that might mark them as liars.
  9. Having assessments carried out by staff other than fully qualified doctors.

I would particularly like to know why Atos do not ask the questions as set out by legislation, instead asking their own random questions, including trick questions to catch people out. For example, “Do you watch Eastenders?” if answered with yes is taken as proof of ability to set in one place for an hour, and to concentrate fully. “Do you have any pets?” is used to determine that the patient is capable of feeding, cleaning and caring for the pet and therefore themselves. “How did you get here?” is another trick, since it can be taken as proof of being fully able to use public transport, when in fact the journey might have caused considerable deterioration in health for the patient but was undertaken out of fear of losing benefits.

This list is just what I can think of in a few minutes, I am sure there are other problems too.

 

Godwin’s law must die

On the internet we have a rule. It is called Godwin’s law. Godwin’s law states that “As an online discussion grows longer, the probability of a comparison involving Nazis or Hitler approaches 1 (100%).”

In the 21 years since Godwin first made this observation, it has been quoted whenever anyone has mentioned Nazis, as a way of saying “You have mentioned Nazis, therefore your argument is ridiculous, therefore you have lost the debate.”

The use of Godwin’s law to end and win an argument by default has been helpful in keeping arguments from straying into ridiculous comparisons but it also brings a risk; the danger that when a comparable situation does arise, it will be ignored because the comparison cannot be made in argument. Godwin’s law has power because of the idea that nothing as bad as the Nazis and the holocaust will ever happen again because we have learnt from what happened in the past. I think that this assumption is foolish and dangerous. Of course such atrocities will happen again. Throughout history we have had bloodthirsty power-hungry leaders of pure evil, over and over again. Pol Pot, Pinochet, Mao, Stalin, Saddam Hussein, and many other leaders have killed thousands, even millions each. Genocides are an relatively frequent occurrence. Groups have been singled out and slaughtered for many different reasons over the centuries, and others will be in the future.

My point here is important so I will state it again. Atrocities of this sort are not rare, have happened and will happen again, and to ridicule anyone making a comparison with the Nazis is to dismiss warnings in a very dangerous way.

Godwin’s law and disability rights

I and many other disability rights activists abandoned Godwin’s law some time ago. I believe that sick and disabled people in the UK are under attack and are the subject of a government and media smear campaign with the aim of turning public opinion against them. Although the Nazis ran a eugenics programme to eradicate all incurably sick and mentally ill people, (Called Action T4) the comparison that I am drawing is mostly with the propaganda element of that programme and the attitude behind it.

Nazi Euthanasia Propaganda
English translation: 60000 RM - this is what this person suffering from hereditary defects costs the Community of Germans during his lifetime. Fellow Citizen, that is your money, too.

The poster seen here speaks of the cost of caring for the disabled person depicted, the same message that is echoed in the cries of “this is taxpayer’s money” that we hear from indignant right-wing tabloid papers today. Papers like the Daily Mail and the Express routinely publish every “benefit cheat” story that they can find, with big front page splashes about people with houses and multiple cars. Headlines claim that just 1 in 14 are unfit for workWe even have “Saints and scroungers” from the BBC spreading the hate. Otherwise nice people are being convinced that there are legions of benefit cheats faking their inability to walk or the horrendous pain that makes every activity torture. (Apart from me. For some reason they never mean me.) All of these politicians and journalists seem to be adept at twisting the facts and lying through omission just for the public outrage that they feed on. They also ignore the realities of illness, of having good days and bad days, of choosing to push through pain to have a good day out, or just to pretend to your family that you are having a good day out so as to keep them happy. As Sue Marsh said, by their standards, we are all benefit cheats now.

Black Triangle Campaign recently received an email referring to comments on their forum making comparisons with the past as “dangerous and extreme”. The email said: “I am not interested in extreme, left wing politics. I am trying to bring attention to government funded medical tyranny, copied from America, and such extreme comments are a distraction from what’s happening at government level. (…) you are playing a very, very, VERY dangerous game with desperate peoples’ lives by posting such extreme comments relating to past war time atrocities that belongs in the past. I DO understand why people feel like this but there are many, many very frail people out there and this will cause harm.

I disagree with the author of that email. I’ve talked before about how government ministers are spreading these stories and lying about the facts and how party special advisors are feeding the media frenzy in a previous blog post. No one here is suggesting that anyone be killed, but our government is focussed on ruthlessly cutting benefit costs along with healthcare and services, all while smiling and announcing that “the most vulnerable will be protected.” Well the most vulnerable are having their benefits cut, being told to shit themselves rather than receiving help to get to the toilet, being told to find jobs when they can barely leave the house, losing their homes, and committing suicide. Many of those that aren’t in that situation expect to be soon and many have talked of suicide. The policies of this government and the relentless abuse coming from newspapers have people living in fear – if what they fear hasn’t already come to pass. In Nazi Germany the killing of sick and disabled people was at first kept well hidden away from any chance of public opposition. What plans are our politicians hiding from us? Is it their intention to force all sick and disabled people out on the streets where they will helpfully freeze to death? Quite honestly, I think that they don’t even care as long as it’s not their problem. I think it is completely fair to compare this demonisation of the sick and disabled to the start of the Nazi attack on the same.

References

Daily Mail: Callous judges have sentenced Elaine to life without dignity (Daily Mail link. Yes, I was surprised too.)

DPAC: Elaine McDonald case: Court puts prisoners before the disabled

Purple noise: The beginning of the end (Warning, discusses suicide.)

Guardian: Jobcentre staff ‘sent guidelines on how to deal with claimants’ suicide threats’

 

 

 

Atos had CarerWatch forum suspended over a five month old link

I hope that by now you are all aware that Carer Watch had their support forum suspended by their server host after Atos made threats to the host regarding libel action. I wrote about this in my previous blog post.

Carer Watch have at last received a reply from Atos as to exactly which messages were considered libellous.  You can read the message from Atos and the response on their blog. The reply is baffling. The message in question is dated March 23rd, 8:51 pm – that is, over five months old. Not only that, but the message does not even contain anything considered libel, but merely a link to an article on a different website entirely. That article is still there, even though Carer Watch’s forum is not.

This whole situation raises several problems. First of all, a hyperlink to an article is not and should not be considered libel. It is merely pointing people to that article. If libel action is necessary, it should be aimed at the article containing libel, not at the sites linking to it. The legality of hyperlinks to libellous articles has not yet been settled.

Secondly, the Carer Watch forum is a private discussion forum. As such, messages posted within are available only to members. This is very different from publishing something on a public-facing websites. It is the equivalent of conversation, not of publishing. We must also ask, how were Atos made aware of the message that they have deemed libellous? Did an employee of Atos deliberately sign up to the Carer Watch forum to look for such messages? If that is the case, then that raises all sorts of questions over the behaviour of Atos. Who else are they spying on? Atos is a private company, but contracted by the government. Atos has power but not responsibility such as to the Freedom Of Information act.

Thirdly, the forum was suspended not by any court order or judicial oversight, but merely by sending a threatening letter to the hosts of the forum. It is an unfortunate fact that when faced with a letter from lawyers, most internet providers and server hosts would rather switch off the (potentially) offending website rather than ask for proof or give their customer any chance to fight the accusation. In the case of Carer Watch the letter from Atos was not passed on to them, and in fact they had to fight to find out what they were even being accused of. It is not acceptable that a whole group can be silenced, and prevented from associating with each other merely at the whim of a letter from a lawyer and an uncaring internet provider.

This situation is by no means unique to Carer Watch; websites are taken down like this all of the time. This issue is a small part of the larger problems surrounding libel and the issue of libel reform has become very important. I urge you to visit libelreform.org and read more about these problems, and sign their petition.

Atos moves to shut down criticism

Atos are the French IT outsourcing company whose Atos Healthcare arm have been running Work Capability Assessment for the Department of Work and Pensions.

Lots of people are unhappy about Employment Support Allowance, about the assessments, and about the way that Atos run them. There have been protests outside Atos offices using slogans such as “ATOS kills” to express their feelings. Lots of people have explained why they are unhappy with Atos in blogs, on social networks, and in support forums.

It seems that Atos don’t like this. They have started issuing legal threats, and they have succeeded in shutting down some of their opposition. Various websites and forums have spoken out against ATOS and collected personal stories about them. After ATOS first received a take down request in May 2011. Atos lawyers recently threatened legal action against Paul Smith who runs the “Atos Register of Shame” website, accusing him of libel and claiming that “This is a direct attack on Atos and the name of the website in and of itself is implying that Atos carries on its business in a manner which is shameful.” You can see a take-down letter from Atos here.  http://issuu.com/atosvictims/docs/legal_letter_from_atos?mode=a_p

They have also shut down a support forum for carers, CarerWatch, by contacting their server host directly and having it taken down. This has removed a vital support network from many carers, presumably because of private discussions about Atos in members only parts of the forum. Apparently people are not even allowed to talk about Atos now, despite needing to do so to support each other when going through tests administered by Atos.

Following this action against them, CarerWatch have published their reply to Atos, which I reproduce here. (I hope they won’t mind.)

21st Aug 2011

FAO  – ATOS Legal Department

CarerWatch is an internet forum for sick and disabled people and their unpaid family carers. This is a private forum and only members are allowed to make/read posts.

We understand from the organisation that hosts our forum that they received a letter from your solicitors threatening to sue us for libel. The provider immediately closed our site down.

We have many members who are very fragile and the sudden disappearance of a support group has caused a lot of distress and fear. Some are ringing us in tears. We cannot get in contact with all of them though as we have lost their contact details through the closure.

All this distress could have been avoided if you had had the courtesy to contact us first and tell us what had been posted on our site that you considered libellous. Obviously if any post was possibly libellous we would have removed it and all this distress could have been avoided.

We imagine this distress is unintended and hope you will work with us in looking at the problem and finding a solution.

Please note that this letter, and any reply received from yourselves, will be posted on our website. It is the only means left to us to reach some members and keep them updated.

It is vital we have our forum up and running again to reach those that are isolated.

Frances

On behalf of CarerWatch members

 

Obviously, I don’t want my website taken down. I have been careful to state only known facts here. These are the facts that I know.

  • Atos Healthcare carries out Work Capability Assessments for the DWP.
  • The contract is worth approximately £100 million per year.
  • There has been a sharp rise in people found fit for work
  • There has been a sharp rise in people appealing that decision
  • 40% of those that appeal, win, rising to 70% with legal representation.
  • Although the decision over “fit to work” lies with the DWP,a government review found that the DWP are institutionally incapable of overriding the Atos Health Care Professionals. The Atos recommendation is, in effect, the decision.
  • Atos employ Health Care Professionals to carry out the assessments. HCPs are a mix of doctors, physiotherapists and nurses. Only people with certain problems will definitely see doctors.
  • Atos use their own Lima computer system to record the patient’s answers. Lima has been widely criticised.
  • The HCP fills in Lima by choosing keywords and statements from a list and then justifying them.
  • An Atos recruiter said “We don’t call them patients . . . We call them claimants.”
  • Twelve Atos doctors are under investigation by the GMC over allegations of improper conduct.
  • Two Atos employees are under investigation after referring to patients as “parasites” and “down and outs”.
In the end, although there is much to criticise with the way that Atos carry out ESA WCAs, they may really only be doing what the government expects of them. The descriptors that are used to make the decision of whether a person is fit for work or not are set out in the by the government. (See The Employment and Support Allowance (Limited Capability for Work and Limited Capability for Work-Related Activity) (Amendment) Regulations 2011) I personally question whether Atos accurately records if a patient fits the descriptors or not, and their ability to do so given the way that Lima Works or the staff that are used. Even if they do make an accurate record in line with the government’s descriptors, it is questionable whether the descriptors are an accurate description of being fit for work or not. Even then, it seems that decision makers at the DWP are “institutionally incapable” of taking into account all of the relevant information for the case as they are supposed to, instead simply rubber stamping the recommendation made by Atos. It would seem that the appeals tribunals are making a fairer judgement on this issue than Atos or the DWP.

My Taxi Adventure

“You’ll have to come back when there’s a doctor here” she said. “We’ll send a taxi for you.”

“A wheelchair taxi?” I asked. “That can take my electric wheelchair?”

“Yes.”

Resigned to another visit to the medical centre, I sat back in the chair while the manager made the arrangements. For all that I dislike about ATOS, the office manager seemed kind enough.

“OK, that’s all booked then. The taxi will collect you at your home at 12 on the 10th of August.”


I’ll let my tweets tell the story of the journey. Includes swearing and typos.

Continue reading “My Taxi Adventure”

Listen to my report on ATOS on the Pod Delusion podcast

My recent report “What’s wrong with ATOS” is now featured on the Pod Delusion podcast. It starts about fifteen minutes in. If you can’t use the player embedded here, you can download an MP3 from the podcast’s own website or find it on iTunes instead.

I have previously appeared on Episode 90 with “Government attacking disabled people” and Episode 91 with “Fragile Social Networks.” The Pod Delusion is well worth listening to anyway. As they put it, the Pod Delusion is “A podcast about interesting things, from a staunchly skeptical/rationalist/liberal/a bit lefty point of view.” If you need more convincing, it was recently featured on BBC Click and you can watch the report here.