The Shadow State: The "dehumanising, degrading" treatment of disabled people

One woman with Crohn's told to work in a nappy; another with 90 per cent burns declared fit to work. No wonder the Work Capability Assessment, administered by Atos, has been declared "unfit for purpose".

There was a fascinating, and – were it not for the tragic background – almost hilarious little exchange buried away in the parliamentary debate last Thursday about the Atos contract to deliver the Work Capability Assessment (WCA). It involved the Conservative MP Robert Halfon and the Labour MP Kevan Jones, and it told us so much about the outsourcing process.

Mr Kevan Jones (North Durham) (Lab): The Hon. Gentleman is correct in saying that the first contract with Atos was introduced by the previous Government, but why did the present Government renew and extend that contract even though they knew about all the problems that he and others have raised in the House?

Robert Halfon (Harlow) (Con): This is where I agree with the hon. Gentleman. I was very disturbed when Atos got the contract for the personal independence payments.

Mr Jones: That happened under this Government.

Mr Halfon: Yes, that is what I am saying. The reasons that were given included the fact that the infrastructure was already in place, and the cost of changing the contractor.

If it’s broke, don’t mend it. This series has only occasionally questioned the fundamental notion of outsourcing. Instead, I’ve tried to illustrate how successive governments have handed misery on to man; how the problem is less a problem of political ideology than of political incompetence and impotence.

Time and again we’ve seen two major failings in our outsourced public services as a result: first, a tendency among to reduce complex human problems to tables of figures which utterly fail to quantify individuals’ situations, and second, a lack of accountability, which only adds to the suspicion about how and why the contractors are operating. As Stephen Gilbert, Lib Dem MP for St Austell and Newquay, would say at the same debate, the problem is not the “principle but the practice”. And the latter is, in his words, “dehumanising and degrading”.

This is what happens when it all goes wrong; the worst of worst case scenarios.

The French multinational Atos was brought in by Labour in 2008 to assess 2.5 million people on incapacity benefit to see if they were fit for work, for which it was to be paid £110m a year. To do this, it used a so-called “logic integrated medical assessment”, which critics claim makes it very difficult for health professionals to exercise their professional judgment. It’s computer-based and has little or no regard to the complexity of the needs of severely disabled or sick persons.

This is why the British Medical Association has condemned the WCA as unfit for purpose. Those who have been assessed often feel the opinion of their own health professionals have been overridden or ignored. As Iain McKenzie, Labour MP for Inverclyde, put it: “It is ridiculous to have people making an assessment based on a tick-list that looks like it should be used for an MOT on a car.”

You could dismiss this as conjecture: but these are the facts. There are 1.6 million claimants on incapacity benefit, assessed at a rate of 11,000 every week. On average 40 per cent of challenged decisions are overturned at tribunal – one in ten of the total assessed. It has cost £60m thus far to assess the appeals. Some 1,300 people have died after being placed in the “work-related activity group” for those expected to start preparing for an eventual return - 2,200 died before the assessment process was completed.

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Last week MPs from across the political spectrum shared stories from their constituencies about the result. It was emotionally shattering – but as St Austell's Lib Dem MP Stephen Gilbert also said: “If we in this House cannot give voice to these people, who are some of the most vulnerable in our society, I really do not know what we are for.” One story was widely shared around Twitter and other social networks. Iain Wright, Labour MP for Hartlepool, described the distress of a female constituent with Crohn's disease who was told she could wear a nappy to work, adding: "The government is treating my constituents like dirt."

There were so many others that didn’t get shared. Steve Rotheram, Labour MP for Liverpool Walton, described a case he had heard about from a constituent, Janine, in Liverpool. "Her dad was thrown off sickness benefit in November after an Atos work capability assessment and was declared fit for work despite suffering from chronic obstructive pulmonary disease. Six weeks later, on Christmas Day, Janine's father died."

Pamela Nash, Labour MP for Airdrie and Shotts, said: “I have had a frail lady sitting in my office who had only recently finished chemotherapy but had been told she was fit for work. I have had a lady who suffered 90 per cent burns to her body — she spends every day in severe pain — and was told that she was now ready to join the Work Programme. I could list hundreds of others — sadly, these are very familiar stories. These people are having their lives ruined by a system that was designed to support them.”

It is ludicrous; it is inhumane, it is shameful.

Jonathan Edwards, Plaid Cymru MP for Carmarthen East and Dinefwr, said one of his constituents “has been diagnosed with an aggressive brain tumour, which cannot be completely removed because that would leave her paralysed. In August and September of last year she had radiotherapy to slow down the growth of the tumour, but in October she was told that it would grow back even more quickly, and that she would have to have further radiotherapy or she would die. I should add that this lady also has polyarthritis and asthma. Why has this lady been placed in the work-related activity group? Her doctors and consultants have specified [...] she is fighting for her life. Her only concern should be winning that battle.”

He told of another constituent who was diagnosed with cancer. She was certified as unable to work by her GP and had attended many DWP hearings about the employment and support allowance, with the final one being in April 2012. She won her tribunal hearing against the Atos decision. She had not received a single penny in state benefits from before April 2012 until she died at the end of November. She faced immense distress and was denied any financial assistance at a time when she was vulnerable and in desperate need.

Still the desperate stories kept coming, from MPs of every political persuasion. Madeleine Moon, Labour MP for Bridgend, said her constituency phones were often "clogged with crying people" distressed by the process. She described the experiences of a constituent who was driven to attempt suicide by her experience of being assessed, and another found fit to work despite suffering from PTSD following a vicious sexual attack. It was one of many tales that showed how the WCA is not working for those with mental health problems, leaving them trapped in a distressing and expensive cycle of appeals and reassessments.

Eilidh Whiteford, SNP MP for Banff and Buchan, said she had “encountered incontinent patients being asked to make four-hour round trips on public transport. I have also encountered constituents who have had to make very long journeys by public transport only to find that their appointment is not double-booked, but triple-booked.” She was one of many MPs who made similar complaints.

Conservative DWP minister Mark Hoban would later point out that three in ten people who are assessed now get Employment and Support Allowance – oddly sold as an “improvement” in the system, which feels rather at odds with traditional governmental attacks on shirkers. He also claimed it was unhelpful to "demonise" the system with "adverse media coverage". I suppose this is "adverse media coverage", but strangely I don’t feel guilty about reporting the words of our parliamentary representatives. In fact I want to carry on cataloguing this despicable imposition of bureaucratic will over human need for another few thousand words or so, but I have to stop somewhere.

Michael Meacher, Labour MP for Oldham West and Royton, said he had been sent 300 case histories, and described three. He told the house he could not “easily contain my own feelings at the slowness, rigidity and insensitivity with which Atos and the Department for Work and Pensions have responded — or very often not responded — to the cries of pain that they have heard repeatedly.” It wasn’t like those cries had been thin on the ground – on a Channel 4 Dispatches documentary, on a Panorama investigation which claimed Atos was working to internal targets, from GPs moved to write in national newspapers, documented on sites like sites like The Broken of Britain, and AtosVictimsGroup, at short length and in great detail.

And as Meacher would later ask: “Is it reasonable to pressurise seriously disabled persons into work so ruthlessly when there are 2.5 million unemployed, and when on average eight persons chase every vacancy, unless they are provided with the active and extensive support they obviously need to get and hold down work, which is certainly not the case currently?”

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Atos is a multinational company that was formed in 1997 through the merger of two French IT companies (it subsequently acquired more, including KPMG Consulting and Siemens IT Solutions and Services). It is the eighth biggest IT provider in the world. It’s hard to gather information on its UK operations – much of its work is shrouded in commercial confidentiality agreements and despite being in receipt of public money, it has not been scared to use legal threats to defend itself. On top of this, some of the doctors who work for Atos Healthcare are made to sign the Official Secrets Act. However, one interesting detail did come out during the debate – we heard that the chief medical officer of Atos, Michael O’Donnell, had joined from an American company, Unum. It had a poor reputation in the US, being described as an “outlaw company” by the US authorities – partly because it was regarded as a “disability denial factory.”

Meacher presented four demands at the debate: an independent assessment of the suitability of the work capability assessment; acceptance that current criteria and descriptors don’t take into account fluctuating conditions; full and transparent details of the Atos contract (they should not be hidden by specious claims of commercial confidentiality), and assurance that the medical expertise of disabled persons’ doctors and related professionals is fully taken into account. Reasonable requests. Will the Government accede to them?

And despite this, as Ian Lavery, Labour MP for Wansbeck, asked – is it just putting “a sticking plaster on a gaping wound”? He asked if we should bin both Atos and the WCA. Dan Rogerson, Lib Dem MP for North Cornwall, replied: “The problem with that suggestion is that all the people who have been through the process and have won appeals will have to go back to square one.” Heather Wheeler, Conservative MP for South Derbyshire, pointed out: “One of my early letters to a previous Minister asked about the point when we say that the system is not working; frankly, I have not had an adequate reply. When someone drops down dead within three months of being assessed as being perfectly capable of going back to work, what is the review process for Atos?”

So the wheels of government grind. Don’t forget, of course, that behind this lies a simple de facto acceptance – from successive governments – of the belief that people won’t do a good job without a little financial incentive. And so they’ve absolved themselves of responsibility for our public services, and now one of them has run into trouble it seems there’s a collective conclusion that we’re like Macbeth: “in blood stepped in so far that should I wade no more, Returning were as tedious as go o'er.”

Screw that. There are some things the state must prioritise, must accept is a key responsibility. The care of the most vulnerable is one of them. The failure of the Work Capability Assessment is the failure of a political generation. If the WCA won’t be brought back to the public sector, it must be made fit for purpose. And it must be made so now.

A protester wears an "Atos Out" sign during a demonstration at the Department of Work and Pensions. Photograph: Getty Images

Alan White's work has appeared in the Observer, Times, Private Eye, The National and the TLS. As John Heale, he is the author of One Blood: Inside Britain's Gang Culture.

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I somehow feel very different this year, waving my teenager off to Pride

I thought times had changed, and was glad – then Orlando hit me like a smack in the face.

When I guest-edited Radio 4’s Today programme a couple of years ago, one of my chosen topics was young people and the internet, and specifically the way in which it can be such a positive force for gay teens who are coming to understand themselves and to find friends and allies. This item was entirely inspired by my own teenager, who came out at the age of 15, and had already found an online community of help, support and friendship.

Back when I was a teenager, I didn’t know anyone who was gay. Well, of course I did, but didn’t know it. My friend had a boyfriend with whom things never quite worked out, and when he came out years later it all made sense. We didn’t talk about it or wonder about it at the time. We sang “Glad to Be Gay” and thought we were cool and we knew nothing.

My kids, on the other hand, know everything, and they’ve taught me so much, mostly in terms of theory and terminology. I’d still thought I was cool but it turned out that in fact I was 53 and out of date, and they dragged me cheerfully into the second decade of the 21st century, blinking, dusting myself down.

The whole experience was a happy one, on both sides. A teenager who came out into a welcoming family. A brief, teary hug, because I hadn’t instinctively known (“God, Mum, your gaydar is crap”), and laughter at the clues I’d missed (“All that watching Eurovision together, Mum – did you still not guess?”). It wasn’t that I didn’t think any of my kids might be gay: just that I was still being a mum and not realising they’d stopped being kids.

Back in 2007 I wrote a song called “A-Z”, about gay teens being bullied at school, a kind of retelling of Bronski Beat’s “Smalltown Boy”, which I’d always adored. But then my own teen wasn’t bullied at school, and was happily out there, and everyone was cool, and I thought, “This is fantastic. What a time to be alive.” A crowd of them – gay, straight, bi – went off to Pride, wrapped in flags and with rainbows painted on their faces, and we took photos and celebrated, and again I thought, “What a time to be alive. Hurrah for Now.”

But then Orlando. Oh God, Orlando, which hit me smack in the face, left me shattered and weeping, feeling stupid for not remembering that there were still people out there who might want to harm my beautiful, clever, funny, science-loving, Ru Paul-loving child. Had we been living in a dream? Were we wrong to do so? We’d just been enjoying the good news, that’s all. The increasing freedom and equal rights. The taking of simple things for granted, like being able to marry and have kids. Just ordinariness – nothing anyone should have to feel grateful for.

How we can both know and not know things. How our longing for change lulls us into believing change has come. Of course I knew there was still a way to go. But there’s knowing and not knowing. There’s knowing something cerebrally, and knowing it viscerally. Love makes you strong and it makes you vulnerable. The people you love are the gap in your armour where the blade gets in, and Orlando was quite some blade.

“Four dead in Ohio,” sang Neil Young, in a plaintive lament for the students killed at Kent State University back in 1970. And the tune keeps coming into my head, with different words. Fifty dead in Orlando. Those text messages sent from the bathroom at the Pulse nightclub, what was it one of them said? “Mommy . . . Trapp in bathroom . . . I’m gonna die.” Mommy. That’s where the blade got in. And I wave my child – 18 now, an adult, but always my child – off to Pride for the third time, but in a different mood this year. Alert. Steely.

I’m reading Maggie Nelson’s The Argonauts, a book about same-sex marriage, non-binary gender identity, family, motherhood and, above all, love, and I come across this line: “Sometimes one has to know something many times over. Sometimes one forgets, and then remembers. And then forgets, and then remembers. And then forgets again.” I promise not to forget again.

Tracey Thorn is a musician and writer, best known as one half of Everything but the Girl. She writes the fortnightly “Off the Record” column for the New Statesman. Her latest book is Naked at the Albert Hall.

This article first appeared in the 30 June 2016 issue of the New Statesman, The Brexit lies