Friday 29 July 2011

We Were Only Following Orders

The letters to the Guardian reacting to its latest article discussing problems within the administration of the Work Capability Assessment by ATOS Origin have drawn an interesting, if rather odious, response. (see the entry by 'Prospect National Secretary' at

The powerful article by John Harris can be read here and is a reaction to the new report by the Select Committee on Work and Pensions (see here), but steps beyond the report to look at a string of examples of malpractice, and wonder how all this can be happen while the general population remain blissfully unaware.

And now we see a response from Geraldine O'Connell, National Secretary of Prospect, the 'union' for ATOS Health Care Professionals (the doctors, nurses and physios who administer the test). Does she join in the horror at what is happening? I'll let you make your own minds up:

John Harris's article makes compelling and disturbing reading. But there are always two sides to a story.

Having introduced herself she goes on to explain:

Recent media interest on the experiences of claimants during the migration of incapacity benefit to employment support allowance has left heath care workers feeling bruised and demoralised

I'm sorry? Several disabled people are dead, dozens, if not hundreds or even thousands have been reduced to contemplating suicide, tens of thousands more have been forced through the stress of appeals (and left without the benefits they depend on for months, even years), the Tribunal Service is creaking under the strain of dealing with all of the foul-ups created by ATOS Origin HCPs (at a cost to the country of £50m), while thousands upon thousands of disabled people (including me) have been treated with utter contempt by her members, and she wants us to feel sorry for them? What kind of twisted mirror-world does she inhabit to think that her members are the sinned against?

She goes on to state:

Prospect fully supports the absolute requirement for all claimants to be treated with dignity and respect.

But gives no indication of how she proposes to ensure that is the case, because it certainly isn't the way her members are behaving now.

Then follows the big justification:

The criteria for qualification for benefit are determined through government policy and not by Atos.

Or in other words 'we were only following orders', and that's a defence that works really well, isn't it?

And for her grand exit she goes for the Big Lie:

health care professionals do not make any decisions on claims themselves

Yet Professor Malcolm Harrington made clear in his review of the WCA, as Geraldine O'Connell must be well aware, that the DWP 'decison makers' are institutionally incapable of overriding the ATOS HCPs due to an overdose of Doctor As God syndrome, meaning that every conclusion by an HCP is in near certainty a decision on a claim.

I'd like to congratulate Geraldine O'Connell on her letter, I didn't think that it was possible for my opinion of ATOS HCPs to sink lower, but her breathtaking arrogance in trying to claim that her members are the sinned against means that she has achieved it. If she really wants the sympathy of the public, then isn't it time the members of her organisation remember the oath they swore to do no harm, and the basic humanity that demands that they ensure that every WCA assessment takes place in such a way that the claimant understands what is being scored by every question asked of them, how their answers will be interpreted, that sits, and listens, and asks about things like repeatability and limitations they might not have thought to mention, and beyond all else, treats the person on the other side of their monitor screen as fully their equal, and a person in need of, and fully entitled to, their help. Anything less is a failure in their duty of care, and a violation of their oath.

And perhaps when her members have done that, then they will be worthy to ask the forgiveness of the disabled people they have abused.

Wednesday 27 July 2011

Twisting the facts, printing lies. How the DWP and tabloids are wrong about fit for work stats

The headlines today are screaming that a mere 7% of ESA claimants aren't fit for work. The Daily Mail says that "Benefits Britain marches on: Just one in 14 disability handout applicants are too ill to work" while the BBC claim "Tests claim few benefit claimants unfit to work" These figures are grossly misleading. These actually come from a Department of Work and Pensions press release, 26 July 2011 – Work Programme provides tailored support as latest figures show people are being found fit for work. Those news stories haven't actually mislead about the contents of the press release too much, the propaganda comes from the DWP. The Express, on the other hand, has gone for "Sick benefits: 75% are faking" which is just an outright lie.

Lets start with the figures from the DWP.

For all new ESA claims from 27th October 2008 to 30th November 2010, the result of the initial WCA is as follows

  • Support Group – 7%
  • Work Related Activity Group – 17%
  • Fit for Work – 39%
  • Claim closed before assessment complete – 36%
  • Assessment still in progress – 1%

These figures are true, but lie by omission. First of all, the figures given are for ALL that start a claim for ESA. As stated, 36% of people that start a claim drop out before they even get to their Work Capability Assessment. Some of these people will drop out because they perhaps shouldn't have applied in the first place. Some might even have been trying it on and then realised that they would be caught. Some recover enough to find work, some find work that fits around their disabilities. Some, however, drop out because they are so ill that they cannot face the application and testing process. We don't know, as no records are kept of reasons for dropping out, but I contend that many more than we know drop out because they are too ill to finish the process. Given that 36% of claimants are not tested, we cannot include them in the 'fit for work' category. That 7% of claimants is actually 11% of claimants who complete the process.

11% is still a very small number. That still casts 89% of claimants as cheats, doesn't it? Well no. No it doesn't. Not unless you are a tabloid writer. You see, 17% of total claimantss - or 26.6% of claimants that finish the process - are put in the Work Related Activity Group. Being put in this group DOES NOT mean that the claimant is fit for work! It means that there may be some job, as yet unknown, that the claimant could possibly manage to do, if they push themselves hard enough,possibly at high cost to their health, IF they receive the right support in terms of information, equipment, services and grants. People in this group must attend six interviews at the Job Centre over the course of a few months to try and determine just what this possible job could be, and the support that would be needed to do it. People in this group STILL RECEIVE ESA.

Adding those two together and leaving out the people that dropped out, that means that 37.5% of people tested were not fit for work. That still leaves 61% that were receiving ESA who were found fit for work. Are they all cheats? No. Here's why.

The Work Capability Assessment takes place at the end of the assessment phase of the claim. That means the test can take place up to 14 weeks after the person started to claim ESA. 14 weeks is a long time, and it should also be noted that people are often sick for a long time before they even apply for ESA, either on Statutory Sick Pay for 28 weeks, or just unaware that they can claim. Those people could easily have been sick for 9 months before being tested. 9 months is long enough for people to recover or start recovering from many health issues, and so these people would have been correctly being given ESA while unable to work. Health issues change, and finding these people fit for work now would be correct, but does not invalidate their claim in the previous months. I think if the WCA correctly finds someone capable of work after many months of illness but heading towards recovery, this is usually a good thing.

Assuming that changes in health conditions account for a chunk of that 61%, let's say a third, that still leaves the rest. Here's the thing. The accuracy of the testing process has been found to be wrong, broken, inadequate, however you want to put it, by MPs, a house of commons select committee, many disability rights charities, and many many individuals and activists. Even a person involved in designing the test has said that it is not fit for purpose.

33% of people found fit for work between October 2008 and August 2009 appealed against that decision. 40% of those overturned that decision and were awarded ESA. That's 27,500 people who were provably found fit for work when they were not. Many more people did not appeal, for many of the same reasons that may have caused people to drop out of the claims process.

Today the Commons Select Committee on the Migration from Incapacity Benefits to Employment Support Allowance released its 6th Report - The Role Of Incapacity Benefit Reassessment In Helping Claimants Into Employment. Among other things, that report criticised media coverage and stated that government had a duty to take more care when engaging with media.

5. Sections of the media routinely use pejorative language, such as "work-shy" or "scrounger", when referring to incapacity benefit claimants. We strongly deprecate this and believe that it is irresponsible and inaccurate. The duty on the state to provide adequate support through the benefits system for people who are unable to work because of a serious health condition or illness is a fundamental principle of British society. Portraying the reassessment of incapacity benefit claimants as some sort of scheme to "weed out benefit cheats" shows a fundamental misunderstanding of the Government's objectives. (Paragraph 40)

6. Whilst fully accepting that the Government, and this Committee, have no role in determining the nature and content of media coverage, we believe that more care is needed in the way the Government engages with the media and in particular the way in which it releases and provides its commentary on official statistics on the IB reassessment. In the end, the media will choose its own angle, but the Government should take great care with the language it itself uses and take all possible steps to ensure that context is provided when information about IB claimants found fit for work is released, so that unhelpful and inaccurate stories can be shown to have no basis. (Paragraph 41)

I disagree with part of this in that I think that consciously or not, Conservative ministers have an ideological motive to move people off of benefits, portraying them as cheats if necessary, with the help of special advisors. (SPADS.) I believe that ministers and SPADS have been feeding selected information to the press to create a national view that is biased against sick and disabled people that claim benefits, and the press have been only too happy to amplify this.

This has been cross posted from the authors blog at

Related Links


(Originally posted at This Is My Blog.)

I know this is ground we've covered before, but a look at today's front pages makes it necessary to go over it again.

In the UK, we have a welfare system. The disability benefit side of it has been being overhauled for the last few years. Labour started it, the Coalition are continuing it, they're using the same company (Atos) to execute it and the same advisor (Lord Freud) to justify it. This is not a party-political issue - red, blue or yellow, to borrow a phrase, they're all in it together.

In summary:
  • If you have a doctor's note stating that you are unable to work because of illness, injury or impairment, you apply for Employment Support Allowance (ESA). For the first 13 weeks of your claim you are paid the "assessment phase" rate of up to £67.50 per week.

  • If the assessment classifies you as entirely unable to work, and unlikely to ever be able to work, for instance because you are bedbound and terminally ill with a life expectancy of less than a year, you are granted unconditional ESA at the "support" rate of up to £99.85 per week.

  • If the assessment decides that, although your disabilities are substantial, you would be able to do *some* work at *some* point in the future with the right conditions/support/equipment/adjustments, then you are awarded ESA at the "work-related activity" rate of up to £94.25 per week. To continue to receive this you must attend regular work-related activities.

  • If the assessment determines that your NHS-diagnosed conditions are not severe enough to substantially impair your ability to work in an office environment, or that you would only require minor adjustments, you are deemed "fit to work". You don't get ESA at all, and are placed on Job Seekers Allowance (JSA) which is a smaller amount of money with much higher conditionality attached. If you are fortunate, there may be a note on your jobseeking file excusing you from mandatory application for specific jobs that would aggravate or be incompatible with your condition (for instance someone with speech and hearing difficulties may be "fit to work" but excused from mandatory application for call-centre jobs).

Leaving aside all the arguments about whether the system is fair, how their fitness-to-work tests relate to what is required to perform a job in the real world, and so on... the Department for Work and Pensions released these statistics yesterday, about ESA applicants over the last two years:
  • 7% were incapable of any work (Support group)

  • 17% were able to do some sort of work given the correct support (Work-related activity group)

  • 39% were deemed to be fit for work and were moved onto jobseeker's allowance

  • 36% dropped out of the application process

  • 1% of applications were still in progress

Today, the Express have taken these numbers and decided that 1% (still in assessment phase) plus 7% (Support group ESA) plus 17% (WRA group ESA) equals 25% of applicants approved to receive some form of ESA. So far, so true. However, their headline screams that therefore the remaining 75% - those moved onto JSA, and those who drop out of the system entirely - are "faking".

This is simply not true.

The fact that a person has failed to score enough points to get ESA (yes, it really is a points-based computer system) does not mean that they scored no points whatsoever, or even that they're not disabled, just that they're not quite disabled enough to be Officially unfit for work. That's why we have the assessment process! To assess people!

To apply to be assessed is not "faking".

To have a level of impairment that falls just short of the ESA bar is not "faking".

There will also be quite a few applicants who suffered an acute injury or illness (for instance, they were in a car accident) and were advised to apply for ESA as a temporary or worst case scenario - but in the 13-week assessment period, they have recovered well so they have been moved to JSA or have returned to work.

To recover from an illness or injury does not mean that the illness or injury was "faked".

There are also the people who get placed onto Jobseeker's Allowance, and go to appeal, and win. The rate of people winning their appeals is around 40% and this increases to 70% where the appellant has someone to represent them. Regrettably, there are also a number of genuinely disabled people who simply don't have the wherewithal to fight an appeal, and have to attempt to survive without the benefits they need. I myself have been in this situation.

To be too ill to fight is not "faking".

There are people who, during their assessment period, are fortunate to find a suitable job which is prepared to make the necessary adjustments, or who, like myself, have enough personal support around them to enable them to be self-employed.

To return to the taxpaying workforce is not "faking".

A very few people will be fortunate enough to have other resources to fall back on. Perhaps an insurance payout of some kind, or a lottery win, or the sale of assets, will save them from the indignity of having to complete a process that treats them as the worst kind of fraudster from beginning to end.

To have alternative resources is not "faking".

Most significantly, there are those who die before the assessment phase is complete.

To die of a condition is perhaps the strongest possible indicator that the condition was not "faked".

I'd provide more concrete statistics, but we don't have them. Once you leave ESA, you're not monitored. We don't know how many of these people have got jobs, have died, have killed themselves, have left the country... no one cares. The Express just goes ahead and calls them all "fakers".

Tuesday 26 July 2011

DWP Uses BBC as Puppet Yet Again

Today the Work and Pensions Committee released its long-awaited report into the widespread failings in the ATOS execution of the ESA Work Capability Assessment - disabled people being hounded out of their benefits by a foreign-owned multinational with a cushy government contract, sounds like just the kind of story to get any journalist to roll out their righteous indignation, right?

But no, what do the BBC lead with: "Tests claim few benefit claimants 'unfit to work'", with the Work and Pensions Committee report relegated to halfway down the page with a suggestion that there has been 'some criticism' rather than the near universal criticism that is the reality. Purely by coincidence (yeah, right - the last quarterly report released on a Wednesday, not a Tuesday), the DWP have chosen today to release their new ESA figures, again claiming that only 7% of ESA claimants are unfit for work. As I showed in my analysis of the BBC report on the previous figures a more reasonable interpretation would be that 43% of people assessed are unfit for work. Interestingly the DWP's own page on the press release states "New statistics published by DWP today show that over a third (39 per cent) of those who claim Employment and Support Allowance (ESA) are assessed as fit for work." So that would be 61% not assessed as fit to work by the DWP's own statement, when did 61% become 'few'?

That the BBC have to include an 'Analysis' section in their report explaining that the figures are more complex than whether someone is unfit for work or not and have to be taken in context (a context the article fails to provide), no matter the implication the headlines will already have firmly implanted in the reader, suggests that there is division within the newsroom on how the story should be handled, with the authors recognising that the form of the story as cast by editorial diktat will be fundamentally misleading; and if that is the case, then isn't the BBC failing to meet the requirements of its Charter that it serve the public interest?

We've grown to expect the disablist propaganda of the DWP and the outright bigotry of the Daily Mail, a hate-mongering rag which makes the late and unlamented News of the World look like an edition of the Church Times, but shouldn't we expect better of the BBC, shouldn't we DEMAND better of the BBC?

Why Atos is unfit to work - a round up of recent news stories

On the same day that Atos has announced that only 7% of claimants are not able to do any kind of work, the government has accepted that its drive to retest benefit claimants was a flawed process.

MPs accept that Atos’s Work Capacity Assessment causes anxiety among the disabled people who undergo the tests, and that large numbers of people believe their test results to be wrong. Of course disabled people already knew that, but it’s good to have this officially recognised.

There was also criticism that the positive aspects of helping people back to work has not been emphasised, leading to those who are able to do some work being stigmatised as “workshy” or a “benefit scrounger”.

Atos says that only 7% of claimants were unable to work at all, but the figures show that 36% of people dropped out of the process (perhaps they had a short-term illness that got better, or even were so scared by the application process that they decided to withdraw – I know of people who were so angry by the injustice of the test and the way they were treated that they decided they would find a way to manage without benefits without going through it again). And 1% of applications were still in progress.

So in fact, of the 63% of applications where a disabled person was assessed and we know the result, 11% were deemed unable to work. That’s another way of looking at it, but Atos always seek to give the lower figure, the one which makes them look as though they are purging as many disabled people as possible from the benefits system.

There are many things wrong with the system, as we know. For example, Atos overbooked appointment slots, then marked some people as failing to attend and their benefits were stopped.

Most shocking is the story of Larry Newman. He had a degenerative lung condition when he was assessed by Atos, with problems walking and breathing. He was awarded no points in the assessment, meaning he was fit to work. “His widow, Sylvia Newman, recalls that one of the last things he said to her, as doctors put him on a ventilator, was: "It's a good job I'm fit for work." He was trying to make her laugh, she says, but it was also a reflection of how upset he had been by the conclusion of the medical test.”

His widow has highlighted 12 inconsistencies in Atos’s report, some of which were simply not true – claiming he was unaccompanied, and had no scars on his chest (they didn’t look!)

You can read more of Larry’s sad story here:

It seems that almost every day another story is released demonstrating why Atos is itself unfit to work.

Monday 25 July 2011

Open Letter to Iain Duncan Smith

The day you get that diagnosis is the day the blood runs cold in your veins. Everything stops. Sound is muffled in your ears, shock runs through you and you know in that moment that nothing will ever be the same again.

Life, that always seemed so ordered and full of potential becomes precious. A gift greater than any you ever appreciated. A privilege, not a right. Your own mortality comes crashing in around you, redefining love and hope and dreams for the future. Everything will change forever in that one horrifying moment.

If the unthinkable happens to one you love, the sense of impotence and fear is worse. You want it to be you. You'd give anything to change things around, to take away all the pain and suffering. You want to take on every invasive test, every painful procedure. You want it to be you laying there, pail and weak, vomiting endless traces of chemo or morphine into a grey carboard tray.

You want to be there. All the time. Every minute of every day. You want to protect the person you love most in the world, to fight for them, to arrange the very best care available. Suddenly work and meetings and focus groups are forgotten - irrelevant even - when contrasted with the battle for life.

Money won't save them. It might make things easier, speed up care or assure access to the most innovative treatments, but the battle is yours and yours alone. Together.

You grieve. Grieve for the carefree days, the easy confidence that good health brings. You grieve for the future, so cruelly and randomly threatened. You grieve for the love and support that always came first. You grieve for your children and the spectre that now hangs above their heads every minute of every day. Youngsters become carers and you grieve for the easy innocence they will never know again.

The luckiest of all might be able to leave work that very moment, rush home and gather up family in strong, caring arms. The luckiest will only have to face a battle with the disease now tearing their family apart, with little thought for other practicalities.

Most are not that lucky.

Most will find that just as their world falls apart, they must still pay the mortgage, still feed the children, still keep working hard. They will suffer endless, unimagined agonies as they try to keep all the balls in the air, desperate to fight side by side with their soul mate but unable to do so.

They might lose a wage. Suddenly and without warning their income may half just as they need it most. They may have no choice but to watch in terror as their modest savings drain away, placing fear of poverty side by side with the fear of death.

Is there anything worse? Could there be anything worse than finding your life turned upside down in every area? Job under threat, home at risk, ambitions and dreams destroyed? As your children's faces become etched with fear, do you tell them Mummy will be OK? Do you keep your financial fears to yourself? Do you take on every burden until the pressure gets too much? Do you try to do the work of 10 men? Superman at work, loving support at the hospital bed, devoted father and capable housekeeper? Can you bear the pressure or do you crack yourself?

There is something worse.

Finding that there is no cure.

Finding that there are no magic chemo bullets to stamp out the darkness, no dazzling operations to cut out the contagion. Treatments are patchy - the doctors tell you if you're lucky they can "manage" your condition, but from this day, life will be about survival. Forever.

The treatments won't stop in a month or a year, but they will still make you vomit or send shooting pains through your skull or make you so sensitive to sunlight that you can no longer go outside. No longer take your children to the park or dig sandcastles in the hazy summer sun. They might make you weak, or angry or depressed. They might cause more symptoms than the disease itself, but they keep you alive and "alive" is all those who love you need. Do anything Mummy, but don't die.

The boss who's been so supportive can't support you forever. 6 months, maybe even a year, but in the end, even the most caring boss will have to draw the line. What do you do? Who will care for your family while you work? Is you child old enough to call an ambulance if she has to? Would she know where the special pills are kept in case Mummy won't wake up? Can you teach her your work number or do you fret and worry through every day, never knowing what you will return home to?

Things won't improve. A grey faced doctor might tell you gently that they will only ever get worse. Functions will fail, dignity will crumble, every previously automatic task will need thought and support. There will be wheelchairs or oxygen tanks or feeding tubes. You will have to learn to change incontinence-bags or give injections or rig up sterile feeds. You will have to find money for a hoist or a voice recognition system.

One day, Mummy might not be able to answer. She may not be able to walk or leave her bed. Birthday parties will have to move upstairs to a fetid room that smells of the end, but you will smile brittle smiles and put up bunting, pretending that nothing has changed. You will all laugh a little too shrilly, jump just a little too nervously, but you will pretend. When the kids are safely tucked up and your partner is finally sleeping a tortured morphine sleep, you will cry great heartwrenching sobs into a cushion so nobody hears.

There are legions of us Iain. Probably millions. We fight great battles every day. We find resilience and love we never knew existed. We find pride in the face of indignity, hope in the face of despair. Our relationships are tested every day and every day we have to whisper "but I love them". Every day, that love has to win. Every day, love is all we have left to get us through.

We pretend the poverty doesn't matter and when faced with life or death, it's funny, but it doesn't seem to matter so much. An afternoon in a park at the beginning of spring, watching the children climb steps to great slide-summits, their joyous eyes flashing in the watery sun is almost too much pleasure to bear. The poignancy of knowing it could always be the last time makes the simplest things precious.

We pretend our ambitions and dreams were not important. Strange, but when your ambition becomes surviving to see your children married, it's true, they don't matter so much.

We pretend we're strong, but we only have the strength we all have, buried deep inside us. We just have to dig deep down to find it. Every day. Forever.


This is why you cannot decide, randomly, that after a year, our families must struggle on alone. A year?? Why a year? Why not 6 months or 3 years or a day? It bears no relationship to the real world, it is policy designed by Dali.

This is why you cannot make us wait 6 months for Disability Living Allowance. Why 6 months? By then we may be bankrupt, we may have lost our homes. We may be dead. The state may end up paying much more through picking up the pieces than in supporting us fairly from day one.

This is why more people must qualify for long term support. Because at the moment, you are failing people with lives like mine. People with Parkinson's and Arthritis and MS. Mothers and sons, daughters and fathers. People with lupus, schizophrenia, bowel disease, kidney failure, epilepsy, personality disorder, heart disease, COPD and thousands of less well known conditions that destroy lives. Countless things as devastating as cancer and some more so.

This is not "welfare." Welfare means to fare well. It is the mark of compassion and evolution in a democratic society. It means no-one should be left in absolute desperation. Your policies are causing this total desperation and I'm sure it is not what you want to do or set out to do.

By all means reform. Goodness knows the system does need to change, but the great myth is that it needs bigger sticks to beat us with and stricter reasons to ensure we do not qualify. Please Iain, listen to me today. You have all beat us hard enough for many years. There is nothing more to squeeze or remove or deny. We live in poverty and uncertainly already, and we have reached a tipping point. Labour's ESA was disastrous enough and already failing. Time limiting, tightening the descriptors yet again and leaving a lengthy qualifying period for DLA is going to cause real hardship and suffering.

Please listen. Please think again.


Please do all you can to help me share this today. You can link to it, share it on Facebook, Twitter or Google+. If you have a Conservative MP, then PLEASE can I ask you to send him this today? You can do it in just a few moments here

Thank you.

Friday 22 July 2011

Why won't ATOS let us record our Work Capability Assessments?

As you will know if you have read my recent blog post "What's wrong with ATOS", there is often a large disparity between what is said during a Work Capability Assessment and what ATOS actually reports to the department of work and pensions. The reports take no account of context in answers ("I can do x IF...") and often fail to note that an action or activity may be possible for a patient, but will have consequences for their health and may not be repeatable. As a result claims are often appealed and ultimately referred to a tribunal.

At that tribunal the patient must demonstrate that the ATOS report is not true for the above reasons. It is permitted for the patient to be accompanied by a friend to witness the assessment, but an audio recording would be the ideal proof. Unfortunately ATOS have made it nearly impossible for anyone to record their assessment.

Many people have attempted to record their assessment using mobile phones, digital sound recorders or dictaphones. Nearly every time ATOS have halted the assessment and refused to continue while being recorded. On some occasions the patient has relented and stopped recording, on others they have been asked to leave and their report has stated that they did not attend their assessment, resulting in their benefit being stopped.

In a response to a Freedom of Information request made at the end of 2010 the Department of Work and Pensions provided the official guidelines to ATOS staff regarding recording of assessments. The most important parts are quoted here.
"Such a request can only be agreed with the prior consent of the HCP, and then only if stringent safeguards are in place to ensure that the recording is complete, accurate and that the facility is available for simultaneous copies to be made available to all parties present. The recording must be made by a professional operator, on equipment of a high standard, properly calibrated by a qualified engineer immediately prior to the recording being made. The equipment must have facility for reproduction so that all parties can retain a copy of the tape. The responsibility for meeting the cost of the above requirement rests with the claimant"

"It is for Atos Healthcare, in conjunction with their legal advisers, to determine the action to be taken in the event of a claimant making an audio or video recording without the prior knowledge and consent of the HCP, or without ensuring that the safeguards defined above are in place"

"If you suspect a customer of trying to film or record an assessment the following action should be taken

Advise the customer that such action is not permitted, explain why not, and ask them to switch the device off. If the customer refuses to comply:

  • The assessment should be suspended

  • Inform your site manager and/or medical manager immediately"
From this it is clear that recording by the patient will not be permitted, will result in the assessment being stopped and might result in legal action by ATOS. What is strange is the circumstances in which they will allow recording. It must be

  • Recorded by a professional operator

  • on professional equipment

  • immediately duplicated in front of ATOS staff

  • paid for by the patient

This is obviously impractical to arrange and priced far out of reach of the patient, who is receiving Employment and Support Allowance to live on, at approx £60 - £100 per week.

In a court case in June 2008 a judge ruled on a patient who had been denied benefit and lost his appeal after ATOS reported that he did not attend because he attempted to record his assessment. The judge ruled that he should be allowed to start his assessment process all over again, because he had not been advised that he could arrange for recording of the assessment in stricter circumstances. What is interesting is the other comments by the judge in his findings.
45. The appellant makes a number of good points in this context. He draws attention to the considerable (and probably prohibitive) cost that would be involved for an individual living on benefits in meeting the Department’s restrictive criteria. He rightly points out that those conditions (which include the presence of a qualified engineer) are actually stricter than those in place for police interviews with suspects. He might also have added that the Department’s own protocols for interviewing claimants under caution in the course of benefit fraud investigations do not require the presence of a qualified engineer (although dual-tape machines and sealed tapes are used).

Let me repeat that: ATOS' requirements are stricter than those for police interviews, and stricter than their own interviews for benefit fraud applications.

So, we get to the really important question. Why do ATOS make it so difficult to record assessments?

There is one relatively good reason. They are worried that a single recording taken by the patient could be digitally altered and then presented before a tribunal as proof. They wish to counter this by having a duplicate recording in their own possession. This does seem a reasonable request, but their chosen methods are over the top and unnecessary.

ATOS also state that "Medical Services view unauthorised and secret recording to be an invasion of privacy." Now, if this were a private conversation between two friends, that might be the case. But this is not. This is an assessment carried out on behalf of the government and with life-changing consequences for the patient. It often starts a process which ends up in the legal system. In these circumstances, it is wrong to claim that recording is an invasion of privacy. In an assessment as grave and important as this, are they really saying that the assessor is going to say something which should not be reported, and that he won't do so when officially being recorded? Because to me, that suggests that they think their staff might be unprofessional in their behaviour.

I think ATOS is clearly wrong to obstruct recording of Work Capability Assessments. At best, this is an uncaring attitude which shows lack of respect for the patient or of any concern over the outcome of their benefit claim. At worst, this is wilful obstruction of justice and a prevention of a proper outcome at a tribunal. There is a simple solution to this. ATOS should allow every patient to record their interview in any way that they wish to, openly so that their staff need have no concerns about privacy. If they are worried about a recording being altered to be used against them, then they should also record every interview themselves. They need not go to the expense of dual recording equipment if they allow patients to make their own recording.

Of course, they won't do this. ATOS must be fully aware of the failure rate of their assessments and the large number of successful appeals against them. They know that if a large number of recordings were to be made, they would be shown up by the vast contradiction between what is said and what is recorded. They would be shown to be either incompetent or to have an agenda against benefit claimants.

This has been cross-posted from the authors blog at

Friday 15 July 2011

BREAKING NEWS!!! Government Delays Welfare Reform Bill...

This just in from the Disability Alliance. I'm sure they won't mind me posting it in full:

Government delays Welfare Reform Bill

The Government has been forced to delay the 2nd Reading of the flagship Bill in the Lords due to peers' concerns over the people affected.

DWP is suggesting other business has blocked progress but the surprise postponement till September from Tues will also give the Government time to lobby peers and answer the queries raised in DA's legal challenge

This is wonderful, surprising, startling news!!! I need a little lie down before I say any more, but remember this - if it gives the government more time to lobby, it gives us more time too :)

Thursday 14 July 2011

Harrington Review of WCA, 2nd Call for Evidence

Professor Malcolm Harrington, author of last year's Independent Review of the Work Capability Assessment, has issued his call for evidence to be considered in this year's follow up report here.

I wrote about problems with the first review back in December, and I'd suggest people read both the original report, available here, and my comments here, in order to understand what they are looking at, and how the first review fell short.

I think a particular problem with the first review was that it wrote off the concerns of many disabled people, reporting experiences that seem all too typical, as simply the result of ill-feeling from people who had been rejected for ESA and who did not understand what type of assessment they would be facing. Yet I understood exactly what the WCA would be looking at, passed, but still had exactly the same negative experiences. Worries about the casual dismissal of evidence from people who have actually experienced the WCA are exacerbated by Harrington's statement in the current Call for Evidence that "it would be helpful for the review to move beyond anecdotal evidence about individual bad experiences of the assessment". Yet as the individuals experiencing the sharp-end of the WCA how can we present anything other than our personal experiences?

The Call for Evidence asks specific questions this year, but states that general evidence will still be considered. I plan on not just answering the specific questions, but also on submitting my experiences as someone who passed, yet still faced every reported failing of the WCA. If you also understood the format of the WCA and passed, yet found your experience to be unacceptable, then I would strongly urge you to consider submitting your own experiences in order to confront Harrington with a mass of evidence that cannot simply be dismissed as resulting from 'ill-feeling' and 'misconceptions'. Equally everyone who has been faced with the WCA should think about submitting their evidence whether they passed or failed. Harrington may be inclined to dismiss evidence from those who were turned down for ESA, but he will find it very difficult to pursue that path if he finds exactly the same negative experiences being reported by people, no matter whether they passed or failed.

Sunday 10 July 2011

Guest post: Why has my government let me down?

This is a guest post by @GemmaGoode and originally appeared here.

I have received disability living allowance (DLA) since I was around 7 years old. My feet are so bad that walking is extremely painful! At 24 I can’t walk half as far as I used too, I have insoles made to go in the one pair of trainers I can fit into and I also take painkillers and anti-inflammatory drugs every day to try and give me some small shot at making it through the day. In the UK if you receive the higher rate mobility component of DLA you can opt to use the money for the motability scheme – a great service where instead of money, you receive a car on a 3 year lease for help with ‘getting around’. At 17 I passed my driving test and I used the scheme to get a car to help me go to work, do the food shopping, attend hospital appointments and go swimming. My car has been the one thing that has enabled me to live a ‘normal’ life. I can have a full time job, run my own home and have the freedom to know If I need to be somewhere I can get there – pain free!

So imagine my devastation when my government, took away my car and told me, you are no longer entitled to help or benefits because frankly you’re just not disabled enough. With no car I fear now my life as I know it is on borrowed time. I’ve appealed but the minimum wait for an appeal is another 11 weeks. With no car I’m struggling to get to work, I have to walk to the bus stop and try and manage two bus journeys and another walk from the bus stop to work. By the time I get there my feet already scream in pain. By the time I’ve done an 8 hour shift I’m dead on my feet and I have the same two bus journey home to do before I can even think about sitting down and resting my red raw and sore painful feet. If they ever get that bad I usually don’t walk on them for 24 hours to try and let them recover but without a car and rent and bills to pay I have less than 12 hours before I have to do it all over again. There’s no chance of food shopping (how on earth could I carry it home!) and I don’t think hospital appointments are available on a weekend.

If I lose my job I lose my house and then where do I go? On a council housing list? Oh I’m afraid not, you see I was bought up to earn my own living, take the minimal help i need and don’t have babies until i can afford them, and yet when I call to ask for help I am told that as i don’t have any dependent children they cannot house me and as i elected to leave work (regardless of why!) they won’t help to find me a home because I had one.

So here I am, in pain and in fear of losing my home because I can’t physically carry on getting to work but more importantly because today my government gave up on me. I’ve spent all my life trying to live the right life, to be a productive part of society and not different but it seems I got it wrong because my society cannot help me unless I have done all the things my hard working mother told me not too.

How much of a failure do I feel to know that my mind IS capable of working but my body is not, it’s not my fault but I’m being punished for it anyway. My car helped me to be normal, there was nothing that I couldn’t do because if my feet couldn’t get me there my wheels could.
The government has a legal obligation to support a child whose parents do not because it’s simply not the childs fault, but when you’re an adult and need support because it’s not your fault, they will stand back and watch your world fall apart around you, regardless of how hard you have tried, regardless of what help you need.

Saturday 9 July 2011

It's going up by HOW much?

When the horror stories start coming, and they don't stop, you know it's time to worry. The latest I have heard about is of a woman in Dumfries who previously paid £21 towards her care at home, per week. She has now found out that her charges are being increased to £1,464 a week. That is not a typo. She now has to pay more per week than she previously paid per year.

This increase of 6,870% was reported in the Dumfries and Galloway Standard and Women's Views on News, and Linda Murray, the woman involved, has been told that she is already £17,000 in arrears.

Ms Murray told the Standard, “I just don’t understand how they expect me to pay this. It’s enormous. It’s over a thousand pounds every single week. That money was to last me the rest of my life. It won’t even last me the rest of the summer.”

Council Leader Ivor Hyslop said,
"We took the decision to change the charging policy to ensure that we continued to provide the services we have been delivering.

"The way we have approached this also ensures that those who cannot afford to pay are still protected.

"We have people checking that a mistake has not been made [in this case].

"When the decision was taken, it was reported to us that rises would be up to four or five times. It is my understanding that one in five people receiving services will see their bills rise."
But an increase of four or five times the amount previously paid is bad enough. Linda Murray's has been increased by around 70 times!

To clarify, she used to pay £1,134 per YEAR, she is now being asked to pay £1,464 per WEEK.

My own council is looking into more charges for social care, which will affect me. The above story does not inspire me with the confidence that the council materials I've received on the subject are trying to suggest I should have.

(Cross-posted at incurable hippie blog).

The worst kind of postcode lottery

The DWP published a press release yesterday, reinforcing the status of benefit claimants as primarily suspected criminals. Titled Cheats warned of benefit fraud blitz, it describes how claimants who live in "high risk postcodes" will be scrutinised, "regardless of age, gender, ethnic make-up, type of benefit recipient, income, disability breakdown or family status".

The lucky claimants in Birmingham's B44 postcode, the Perry Barr and Kingstanding area, will be the first to receive the Mobile Regional Taskforce. Yet again, benefit claimants are automatically under suspicion, simply because they are unlucky enough to have to rely on government money, and now because they live in certain postcode areas.

It does not explain what makes a particular postcode 'high risk', but I would imagine they are made up of areas which are more deprived, with higher numbers of people already living in poverty. So, the more likely you are to need government support, the more under suspicion you are?

Benefit claimants are not criminals! While finding people who are committing fraud on a huge scale is clearly important, this move just reinforces the propaganda coming freely from the government and certain parts of the media that we are all ripping off 'the taxpayer' and need hunting down and prosecuting. It increases people's anger at us, and our fear at our situation, over which we have no control.

(Cross-posted at incurable hippie blog).

Friday 8 July 2011

What's wrong with ATOS


In two weeks I have to undergo a Work Capability Assessment which will determine whether or not I will continue to receive Employment and Support Allowance while I am ill. I will be placed into one of two groups: the Support Group, who are judged sick enough to be left alone to receive ESA, or the Work Related Activity Group, who are thought able to attend several Work Focused Interviews and eventually to be able to work if pushed enough. If by some miracle I am suddenly cured, I could be declared fit to work and moved on to Job Seekers Allowance and classed as unemployed.

That all sounds OK, you might think. It sounds reasonable, we have to make sure that sick and disabled people receive support, and the the work shy are sent back to work. But there's a problem. It isn't my GP that will carrying out this assessment. Nor is it any hospital specialist. It's not even the Department of Work and Pensions that will carry out this test, even though they requested it. No, instead of any of these, it is a French IT company called ATOS that will decide if I am fit to work or not. Specifically, a division of ATOS called ATOS Healthcare that has been contracted by the DWP to carry out these assessments and provide "medical advice" at a cost of £100 million a year. "That's absurd!" you may say. What does an IT company know about health? Well, that doesn't matter, according to ATOS. They have developed a computer system called LiMA that records the patients answers given in an interview, and makes the decision based on points. It's all very straightforward. What could possibly go wrong?

Well obviously something has, because ATOS is the subject of strong protest. On twitter and on blogs anger against ATOS has been obvious, cropping up again and again. In the physical world campaigners have held extensive protests outside ATOS buildings, with signs and slogans like "ATOS kills" and "ATOS don't give a toss." ATOS recruitment fares have been targetted too. When sick and disabled people are scared and angry enough to picket a company, wheelchairs and crutches and all, there might just be something wrong. A commons select committee has been investigating the Migration from Incapacity Benefits to Employment Support Allowance, and while questioning senior executives from ATOS healthcare MP Stephen Lloyd said that Atos was "feared and loathed probably in equal terms" by the families and friends of disabled people. Lisa Coleman, a senior manager at ATOS, said that "fear and misunderstanding" could be blamed on claimants "not really understanding the role that Atos plays".

So what is the problem with ATOS? Well, for a start, the computer can only work with what it is told. And what it is told is keywords. The examiner asks questions about things such as walking, reaching, communicating and controlling the bowels. The answers don't really matter much, because the examiner stares fixedly at the computer screen and picks keywords and numbers from a list as they are mentioned and the computer assembles them into a sentence and fills in the gaps. This has often resulted in some absurd and misleading statements. Some genuine examples include "usually can do light gardening for 1 minutes" and "The client’s Amputation of Upper Limb is mild. They have seen a specialist for this problem." Another claimant stated that she pottered about all day; it was recorded as "Customer does pottery all day." After the questioning is complete there is usually a very short physical examination. The claimant may poked and prodded and instructed to stand up, raise their arms, pick something up, or make other movements. It is all very rushed and does not leave time or scope for much useful data to be gathered. In addition the examiner records observations about the patients ability to walk and talk while at the assessment.

This assessment is flawed for several reasons. Firstly, the data gathering process is inaccurate and rushed. Staff carrying out the assessment have strict targets and are expected to get through five assessments in a morning or afternoon session, which allows about 45 minutes per assessment at most. People that have been through the process complain that the examiner spent their time looking at the computer rather than paying attention to them.

Once the examination is over the examiner produces a report that may bear little resemblance to the patient's actual condition. The reports often fail to take into account the variable nature of many illnesses. What the patient can do on one day is by no means representative of what they can do the next, and for someone who is chronically sick or disabled, each task in itself may be achievable but exhaustion and pain can often prevent repetition or moving on to the next task.

An ATOS examiner might note that a person can sit at a computer, walk to the shops, cook a meal, and wash themselves. What they fail to note is that it might well only be possible to do one of those things on any given day! Being fit to work in an office, for example, involves a series of tasks - washing, dressing, commuting, sitting, talking, thinking, typing, holding the telephone, holding a pen, making decisions, defending those decisions, and much more. I could do any of those things, sometimes, maybe, but I could not do them all together, and I certainly could not make any guarantees about when I could do them or how long it would take, or even guarantee to do them at all. ATOS cares not. If you say that you can ever manage a task, it is assumed that you can do all of the tasks all of the time. They may well assume that because I could write and record this article, I could write for a living. They don't see that it took me several days to write including many hours of frustration as my body left me in too much pain or fatigue to think or type.

Another flaw is that the ATOS assessment process can often be harmful in itself. For example, I could usually raise my arm above my head when asked. It would result in pain and fatigue which the examiner would not see. It would also be harder to do a second time, and after a few goes I would be unable to do it at all. The ATOS examiner would simply note that I could manage it the first time and would take no account of whether or not I could do it again or what price I paid for doing it.

More problems occur because at least a fifth of ATOS medical centres are not wheelchair accessible. Only one third of the centres have onsite parking, while visitors are required to walk from car parks several minutes away for other centres, and just one has a parking space for disabled people. 30 of the centres are not on the ground floor some don't even have lifts! Considering that people only visit these buildings when they are sick or disabled and a huge number of them will be using walking sticks or wheelchairs, this is ridiculous.

For many people, just getting to the ATOS medical examination centre can be a major challenge. In a letter sent out to notify me of my impending assessment I was helpfully sent a suggested journey plan. It included bus, train and 17 minutes of walking. I do understand that the journey plan is a standard item sent out to all claimants, and this is why they have suggested that I walk despite them being fully aware that I cannot stay on my feet for more than a couple of minutes.  But I can't be the only one that would have trouble with that journey. In fact, I would suggest that a majority of  people that claim ESA would find it difficult. Whether that be through inability to stand or walk, or pain, or fatigue, or because of a lack of accessible buses, or through mental health problems that get worse when around other people or attempting a task such as travelling. The problem is that many people will attempt and complete the journey at great cost to their own health, purely because they feel that they have to. Again, ATOS would merely note that the journey had been completed, and not what it cost in terms of pain, fatigue and recovery time.

It is not just the people subject to the tests that are unhappy with the situation. As I mentioned above, a commons select committee has been investigating the Migration from Incapacity Benefits to Employment Support Allowance.  In February, Dr Margaret McCartney attended a recruitment evening with ATOS Healthcare and reported back in the British Medical Journal. She noted that apart from doctors, ATOS also recruit nurses and physiotherapists for the same role, and that patients often would not be examined by anyone with knowledge of their health conditions. She reported that ATOS said "You are not in a typical caring role. This isn’t about diagnosing." and "We don’t call them patients . . . We call them claimants."  She said that "Throughput is a clear focus" and that "from the recruitment evening it was clear that the medical examination consisted of a computerised form to be filled in by choosing drop down statements and justifying them. For example, you could say “able to walk with ease” if you witnessed this or the patient told you this." Even Professor Paul Gregg, who was involved in designing the test has said "The test is badly malfunctioning. The current assessment is a complete mess."

Since ATOS have taken over the assessments for ESA, both ESA and the contract with ATOS originating from our last government, by the way, the number of people being judged fit for work has risen substantially but high numbers of those go on to appeal with a 40% success rate at overturning the decision. That rises to 70% of cases overturned when representation is provided. This has caused alarm to a great many people with groups such as Citizens Advice Scotland reporting "Our evidence has highlighted the cases of many clients with serious health conditions who have been found fit for work, including those with Parkinson’s disease, multiple sclerosis, terminal cancer, bipolar disorder, heart failure, strokes, severe depression, and agoraphobia." In fact there have been several recent cases where people have died soon after being judged fit for work and while waiting for their appeal. In one case the patient died IN the ATOS building after his assessment. On the day of the funeral his family received a letter notifying them that he had been declared fit for work.

Clearly, the Work Capability Assessment needs a rethink. Actually, the whole system by which benefits are controlled needs a rethink. Government insist that GPs can be trusted to take over administration and budgeting of the NHS from Primary Care Trusts, and yet they do not trust GPs and specialists to say whether or not their patient is capable of work or needs to rest at home.  The current arrangement for ATOS to assess patients does not and cannot provide for accurate assessment and proper care.

This article has been cross-posted from Tentacles of Doom


Related Links

Margret McCartney reports for the BMJ: Well enough to work?

The Guardian: New disability test 'is a complete mess', says expert

ESA and how the Lima computer system says "NO"

The Guardian: 'The medical was an absolute joke'

MP asks Atos bosses why their company is ‘feared and loathed’

Disability activists demonstrate against Atos Origin - London

3 more assessed "fit for work" by ATOS die

BBC Ouch: ATOS assessment centres not accessible

Commons Select Committee: Migration from Incapacity Benefits to Employment Support Allowance

Disabled People Against Cuts: Atos don't give a toss!

DPAC - Debbie Jolly: The Billion Pound Welfare Reform Fraud: fit for work?

 PCS - Welfare: an alternative vision [PDF]

Thursday 7 July 2011

When the dignity of one person is denied, all of us are denied

Disabled people in the UK have been under constant attack lately. Whether it's the vast and wide-ranging benefit cuts; Birmingham city council refusing care to people with substantial needs, which has since been ruled unlawful; cuts in Access to Work, ironically when we are being told we should all be getting jobs; or the impending closure of the Independent Living Fund, the hits feel like they are coming from every direction.

But I read about a case a few days ago, Court tells disabled woman: just wet yourself, and it showed me just how government cuts are affecting real people. It is not an 'austerity measure', nor is it 'small government', it is an affront to a woman's dignity and human rights, and we should all be utterly outraged.

Elaine McDonald has just lost a Supreme Court fight for her local council to allow her to continue to have overnight care. Funding was withdrawn by the Royal Borough of Kensington and Chelsea for the overnight care that Ms McDonald needs to assist her with going to the toilet during the night, and the council instead gave her some incontinence pads, stating that this was cheaper.

Elaine McDonald is not incontinent! And she, quite rightly, objects to being asked to lie in bed for 12 hours at a time (since her care has been cut), in her own waste. She needs to go to the toilet regularly due to a bladder dysfunction, and complained that providing pads instead of care caused a lack of dignity and independence.

Can you imagine if you were at work and your boss stated that bathroom breaks were wasting time and money, and that it would be cheaper for the company to provide everyone with incontinence pads instead? If you weren't on an authorised break then you could just use the pad instead, and sit in it until you were permitted to go? And Elaine McDonald is in her own home - of course, moving to a care home instead would cost the council considerably more.

Even in purely economic terms this is a questionable decision. The lack of mobility which she will now experience, and the potential infections from spending night after night in your own faeces and urine, could cause significantly worsened health and social problems, which would increase the cost of her care significantly. And some people in Ms McDonald's situation may try to go to the bathroom or commode regardless, risking increased falls and, thus, increased health and social care costs again.

But the Supreme Court judges ruled 4-1 that the council had acted lawfully. Judge Lady Hale, the sole judge to rule in Ms McDonald's favour, stated that,
"A person in her situation needs this help during the day as well as during the night and irrespective of whether she needs to urinate or to defecate.

"Logically, the decision of the majority in this case would entitle a local authority to withdraw this help even though the client needed to defecate during the night and thus might be left lying in her faeces until the carers came in the morning.

"Indeed, the majority view would also entitle an authority to withdraw this help during the day."

Of course, incontinent pads in themselves are not bad things. For people who are incontinent, they are invaluable. But Elaine McDonald does not need them and does not want to use them. Nobody should be put in this position, and she was right to challenge it legally. The depressing truth is that the council and courts rated costs over human dignity, and Ms McDonald could be the first victim of many.

And it seems that she is not the only person being challenged on their use of a toilet to save money. According to The Scotsman, "disabled residents at a supported-housing complex have been told to train themselves to go to the toilet at fixed times to fit in with a strict new rota". Is this where the infamous Big Society comes in? You can run libraries, or you can assist disabled people to go to the toilet. Because after all, those who should be providing those services will not bother.

[The image is a photograph of a hand, holding a piece of paper on which is printed, "The budget is killing me!". The photograph is adapted from an original, licensed under a Creative Commons licence, by Steve Rhodes.]

Need the Loo? Book a Time Slot.

No sooner have the Supreme Court finished shaming each and every one of us by ruling that Kensington and Chelsea Council (representing by far the richest borough in the country, with 1 in 6 earning over £60K p/a) are fully entitled to tell a disabled elderly woman that she should just wet herself rather than provide her with the support to use the toilet during the night that her disability requires, than The Scotsman reports that a supported living complex in Aberdeen has started telling its residents that if they need staff help to get to the bathroom then they will have to schedule it on a roster and that when residents questioned this new regime they were told to 'train their bowels'. Social Care and Social Work Improvement Scotland have launched an urgent inquiry, but are the stormcrows of the Supreme Court's precedent-setting decision already coming home to roost at the heart of Cameron's Big Society? And if we need to pre-book our slot to go to the toilet then is it the Big Society, or the Big Brother Society?

If managers at the heart of a private company, intent only on reaping maximum profit from those whose disabilities force them into dependence on their care; or councillors at the heart of a local authority, intent only on shaving the maximum possible savings from a constituency who lack the political capital to threaten them at the ballot box; feel able to so cavalierly dismiss our rights to human dignity and respect in favour of what is tantamount to abuse, then are they really any morally different to the thugs who physically abused the residents of Winterbourne View? Dousing someone with learning disabilities in cold water, insisting that a disabled, elderly lady wet herself for your convenience, are the ethical issues really so different? And if the motive for the abuse is not the personal inadequacy of the bullies amongst us, but the cold, hard, bottom line of personal profit, then isn't the failure of personal ethics actually far, far worse.

And if the highest court in the land supports these abusers in their actions, then how can we have any respect for the judiciary? The purpose of law is to encode a system of ethics, the purpose of the judiciary is to protect and defend that system, not connive at its systematic erosion.

Wednesday 6 July 2011

Guest post: Court tells disabled woman: just wet yourself

This is a guest post by Indigo Jo and originally appeared here.

Ex-ballerina Elaine McDonald care ruling ‘shameful’(with video)

I wasn’t aware of this case until I read earlier today that the Supreme Court had refused it: Elaine McDonald, a 68-year-old former ballerina who lives in west London, who had been left disabled by a stroke in 1999, had been challenging the decision by her local council (Kensington & Chelsea) to cease to provide night care in case she needed to use the toilet, providing her with incontinence pads instead. She is not incontinent. (More: Where’s the Benefit?, Disabled People Against Cuts.)

Hearing about this, I cannot help but think that whoever made the rules could not have imagined that decision-makers would even consider telling a person who is not incontinent to just wet themselves but Michael Mandelstam, in his recent book How We Treat the Sick (the link is to Amazon UK, as it’s about the British health system), it’s become sadly common in some places for nurses to tell patients who cannot get up to use the toilet to simply do it in bed. On reading this I sent out a tweet saying I couldn’t believe any nurse would tell a patient to wet the bed rather than attend to them, and was told (by a disabled woman who had seen the inside of hospitals on several occasions, as had several of her friends) that this was nothing compared to what she had seen and heard about. As one might expect, Ms McDonald said she was horrified at the original decision and found today’s court decision very upsetting, while another Supreme Court judge noted that it would enable authorities to deny people care related to toileting during the day as well.

Of course, some disabled people are incontinent, and providing incontinence pads is a perfectly proper and necessary form of care for them, but some say it’s the worst aspect of being disabled — I read an article about Judy Mozersky, a woman who became “locked in” after suffering a brain-stem stroke while at college, and when asked what was the worst aspect of her condition, that was the one she named. That they would ask a continent person to lie in their own urine and faeces for hours demonstrates that they have no idea of what that means. It is particularly distressing for an elderly person who has lost much of their independence but not that, or for a child who has fairly recently become continent. I recall how distressed I was when expected to put a plastic sheet on my bed when starting at boarding school, not having had such a thing at home and not having wet the bed for four years. And it has been noted that some people who are not incontinent find it impossible to pass urine into a pad (E. Collingridge, 2010), and that in such circumstances, a catheter might be appropriate. This could result in prolonged discomfort (or possible medical repercussions) and sleep problems.

I do hope this does not result in the needs of elderly disabled people being pitted against those of younger people with disabilities; the needs of the elderly are a media-friendly issue, as they can be portrayed in the popular press as people who have paid taxes all their life and then left to sit in their own urine by the uncaring professionals, bureaucrats or whoever, which is not so easy with younger disabled people. The judgement, like the original care decision, is clearly based on ignorance of the consequences for Ms McDonald’s health and that of all those who might be affected, including the more severe hygiene requirements to prevent skin breakdown and infection. Surely, political intervention is vital.

McDonald, R (on the application of) v Royal Borough of Kensington & Chelsea

David Cameron, October 2010

The Supreme Court have made a decision in the case of Elaine McDonald a former principal ballerina in the Scottish Ballet. The legal arguments are varied but centre around whether there was a fair review of care conducted, whether the decision infringed Ms McDonald's rights under Article 8 of the European Convention on Human Rights and whether there was a breach of section 21 and 49A of the Disability Discrimination Act (1995) (now superseded by Equality Act 2010)

On a 4-1 majority the Supreme Court have dismissed Ms McDonald's appeal. Whilst the legal principles are important, for most of us they aren't relevant. The crux of this issue is very simple.

"What do we, as a society, think is an acceptable way to treat our elderly people, our disabled people, our sick people?"

The answer from the courts is damning to us all. It says that as a country we find it acceptable to leave our elderly people, our disabled people, our sick people lying in their own piss. All night. Even when that person is not incontinent and only requires a few moments assistance from another person to ensure their dignity and comfort.

Is this what we want for our mothers and fathers? Is it what we want for our grandparents? For a generation who fought for all our freedoms? Is this what we want for ourselves? Even if you don't really care about sick or disabled people one day we will all be old. We will all be vulnerable. We will all learn the lessons of powerlessness, of how it feels to have our lives held in an uncaring hand. When that time comes for you, do you really want to be left in your own urine. All night. Every night. Until you die?

Monday 4 July 2011

Picklesgate: How Many DWP Ministers Have Lied to the House?

The revelation of Eric Pickles' January letter to the PM expecting 40,000 homeless families as a result of benefit caps and housing benefit changes looks like touching off a row in the Commons as to whether Tory ministers have been systematically lying to Parliament.

An article in the Guardian identifies a DWP report in February and statements in the House by Chris Grayling (Welfare Minister), Grant Shapps (Housing Minister), Maria Miller (Minister for Patronising Disabled People) as all stating that it is either impossible to quantify the number of affected households or that the problem will not get worse. Yet Eric Pickles' Community Department delivered precisely that quantification of the problem into the Prime Minister's hands in January.

Labour are expected to try and force an urgent question on the issue in Parliament today.

According to the DWP it does not accept the figures in the letter and "There might be some people who have to move to a less expensive area. But that doesn't mean they won't have anywhere to live. We are very optimistic about the behavioural change that this will bring about" Behavioural change? That would be us mere plebs not expecting to be able to continue living near right-thinking, posh Tory voters then?

The DWP spokesperson also said "We cannot carry on with a situation where people on benefits can receive more in welfare payments than hard-working families" But what if those people on benefits need that amount of money simply to survive while supporting family members with complex needs?

Sunday 3 July 2011

Benefits Cap to Make 40,000 Families Homeless

...And Cost More than it Saves

According to a story in the Observer and picked up by the BBC, Eric Pickles' department warned No.10 in a letter from Eric Pickles' Private Secretary to David Cameron's Private Secretary (the standard method for a minister to draw something to the PM's attention) that the £500/week benefits cap would result in 40,000 families being made homeless and cost more than it saves.

Of the families made homeless, 20,000 will result directly from the cap, while 20,000 will result from related changes to the rates of housing benefit.

The letter claimed the supposed savings of £270m would be more than wiped out by the increased cost of caring for newly homeless families and generate a net loss, while 23,000 of the 56,000 affordable homes the government wants built by 2015 will not be built at all because it will be impossible for the builders to recoup their costs, and that this will primarily affect family homes.

The letter was apparently sent in January, casting doubt on Chris Grayling's claim before parliament last month, in respect to families being made homeless by the benefits cap, that "It is not yet clear to what extent they would be affected by the overall benefit cap."

In confirmation of the effects of the changes, Westminster Council announced on Friday that 81% of the families on housing benefit in the Borough, more than 5,000 households, were at risk of being made homeless, because rental rates in the borough require housing benefit payments in excess of the revised housing benefit cap, with most seeing a cut of £84 to £130/week, and nearly 1 in 8 seeing a cut of more than £300/week . The Tories are naively hoping that landlords will accept lower rents -- yeah, right.

80% of landlords surveyed by Westminster Council said they would rather end the tenancy than lower rents. The council's own figures show that 4,000 children would have to leave the borough and change schools (so school closures to come, I suspect), half the children on the council's At Risk register would be forced out of the borough. 300+ pensioners, 95 of them with serious health concerns, and 61 disabled people will be similarly affected.

The council warns it could be forced to find £18m in order to temporarily house 1,500+ families from next January, but in 2013 the benefits cap is extended to temporary housing and the only alternative would be to move the families affected entirely out of the borough. The report cheerily predicts that within 3 years, homelessness won't be a problem in Westminster, because it will all have been packed off to become the problem of the outer London boroughs.

Boris Johnson was widely reported to have warned that this policy would amount to the 'Kosovo-style ethnic cleansing' of London social housing, but, reassuringly for those of us whose worlds would be shaken by a Boris with a social conscience and a line in incisive social commentary, he was misquoted, is in agreement with government policy and insists that it will not result in social-cleansing and that 'no such exodus will take place on my watch'. Westminster Council would appear to be putting one of his assertions to the sword and the other to the test.

Westminster will be one of the worst affected boroughs, but other inner-city boroughs are likely to see similar effects, and all boroughs will be affected to some degree. Now take Westminster's 5,000+ and extrapolate those effects across the entire country....