The tragedy of Alice

How the Work Capability Assessment costs lives - its impact on people with mental health problems is more serious than Atos have acknowledged.

You probably won’t have heard much about the case of Alice (name changed). She’s a 33-year-old woman who lives in the West Country with her parents. She’s very poorly: she suffers from severe bipolar disorder, and has been sectioned on numerous occasions after harming herself.

In February last year, she received a letter from the outsourcing company Atos, which told her that she was about to lose her disability living allowance and would have to undergo an assessment before could receive employment support. Shortly after this, Alice was found by her mother in the bathroom. She'd slashed her throat in the bath. She was taken to hospital for treatment, and survived.

Alice’s community psychiatric nurse and a forensic psychologist contacted Atos, and told the company not to contact her directly again. The company agreed. The morning after she’d been released from hospital, she returned to find another letter concerning an appointment. She slashed her throat again, and was readmitted to hospital.

Alice’s mother got in touch with Bufferzone, a local benefit advice charity. They managed to restore her benefits without the need for further tribunals. But the last issue of Private Eye - thus far the only publication to have covered this story - carried a staggering update:

Last week, Atos wrote to Alice again. Fortunately the letter arrived while her condition was stable and she suffered no ill effects. Tony Lea of Bufferzone was again forced to take up her case. Atos told him the letter was computer-generated - and could not be stopped. Brilliant.

Perhaps, were it to concern another company, this ludicrous tale of cruel incompetence would be making more headlines. But the problem is, we’ve run out of ways of telling the story. Here’s a list of 30 similar tales where the outcome was worse: the victim died.

As John McDonnell MP has pointed out in Parliament:

The first [now second] example on the list was that of Paul Reekie. Some Members may have known Paul, an award-winning writer and poet in Leith, Scotland. He did not leave a suicide note, just two letters on the table beside him. One was about his loss of housing benefit and the other was about his loss of incapacity benefit.

 

Tony Lea, Alice’s advisor, has been working at the coal face for years. A garrulous, likeable man, (“Stop me if I’m going on: I’m just some bloke with a big mouth”) he set up Bufferzone six years ago, originally as an advocacy service for those suffering from mental illness. Its remit expanded - now he helps the homeless, alcoholics, those suffering from disability, victims of abuse, and other vulnerable. He’s got a whole load of stories, from meeting a mentally ill woman in the middle of a field at night with the police in tow because that was the only place she’d talk to him, to being attacked and having his car windscreen smashed. He’s seen it all: last year, on a budget of £16,000, which he secured from Lloyds TSB, the Co-Op, the Claire Milne Trust and Awards for All, he managed to support 187 people.

And one thing he’s sure of is that Alice’s case, though shocking, is hardly new. He wonders whether the rules should mean that a risk assessment has to be carried out before contact is made with people like her. “I was struck when I saw her in the ward,” he tells me. “I couldn’t believe how badly she’d damaged herself. But I’ve seen this sort of thing day in, day out. The simple fact is, the people behind the assessment don’t understand mental illness, nor do they understand invisible, fluctuating conditions like fibromyalgia or chronic fatigue syndrome. A question like “Can you switch off an alarm clock?” just doesn’t begin to cover these conditions or co-morbidity - the way that one affects the others. And they’re not just putting the lives of the mentally ill at risk - they’re putting the lives of the people with whom they could end up working at risk too.”

It’s not just the likes of Tony who have noticed this - or, here in more detail, charities like MIND. In January’s parliamentary debate, which I wrote about here, there was general condemnation of the Workplace Capability Assessment’s (WCA) performance when it comes to mental health. Michael Meacher said the “current criteria and descriptors do not sufficiently—or even at all—take into account fluctuating conditions, especially episodic mental health problems.” Pamela Nash described “Seeing people who have claimed employment and support allowance as a result of a physical disability or illness ending up with mental health problems owing to the stress of going through the system.”

Madeleine Moon described a female constituent, “Mrs E”, who had worked as an accounts officer, but suffered a vicious sexual assault which left her with post traumatic stress disorder. She went to an Atos assessment for Employment and Support Allowance, was found fit to work, and found herself in a similar situation to Alice, repeatedly having to attend appeal tribunals and having her payments stopped on several occasions due to “administrative errors,” the stress leading to a suicide attempt. She concluded: “This lady is being hounded by the state: there is no other way of describing it. There is no excuse for this behaviour. This is a company that is not playing fair by this country’s most vulnerable people.”

So what’s being done? The answer is detailed on Atos’s company blog: “We have put in place a network of Mental Function Champions to spread best practice across the business and offer advice and coaching to other professionals carrying out WCAs. We invited leading external experts in mental health to help us shape the role for the Mental Function Champions, and we now have 60 Champions.” As Heather Wheeler MP made clear, not only are these “champions” only giving guidance (they won’t be sitting in on interviews), but given the WCA’s lack of suitability to deal with the issue of mental health, it’s patently clear that 60 is not enough of them.

And more to the point, what do they really do? The journalist Kate Belgrave has been monitoring the development closely and has recently written this excellent blog post on the lies, prevarication and lack of transparency that has characterised the initiative (as she told me on the phone last night: “At one point, we started to wonder if these people even existed”). Since that blog was published Atos has told her group that a face-to-face meeting is possible, but it would have to be off the record. They are waiting to find out if they’ll be able to report on any discussion.

Flawed, secretive and cruel: it’s the very worst of the shadow state. Or, as John McDonnell MP put it:

The concern expressed by Members about an issue of public administration in all [these stories] is unprecedented in recent decades. There is example after example of human suffering on a scale unacceptable in a civilised society.

 

 

Protesters carry placards during a protest against Atos in London in August 2012. 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.

#Match4Lara
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#Match4Lara: Lara has found her match, but the search for mixed-race donors isn't over

A UK blood cancer charity has seen an "unprecedented spike" in donors from mixed race and ethnic minority backgrounds since the campaign started. 

Lara Casalotti, the 24-year-old known round the world for her family's race to find her a stem cell donor, has found her match. As long as all goes ahead as planned, she will undergo a transplant in March.

Casalotti was diagnosed with acute myeloid leukaemia in December, and doctors predicted that she would need a stem cell transplant by April. As I wrote a few weeks ago, her Thai-Italian heritage was a stumbling block, both thanks to biology (successful donors tend to fit your racial profile), and the fact that mixed-race people only make up around 3 per cent of international stem cell registries. The number of non-mixed minorities is also relatively low. 

That's why Casalotti's family launched a high profile campaign in the US, Thailand, Italy and the US to encourage more people - especially those from mixed or minority backgrounds - to register. It worked: the family estimates that upwards of 20,000 people have signed up through the campaign in less than a month.

Anthony Nolan, the blood cancer charity, also reported an "unprecedented spike" of donors from black, Asian, ethcnic minority or mixed race backgrounds. At certain points in the campaign over half of those signing up were from these groups, the highest proportion ever seen by the charity. 

Interestingly, it's not particularly likely that the campaign found Casalotti her match. Patient confidentiality regulations protect the nationality and identity of the donor, but Emily Rosselli from Anthony Nolan tells me that most patients don't find their donors through individual campaigns: 

 It’s usually unlikely that an individual finds their own match through their own campaign purely because there are tens of thousands of tissue types out there and hundreds of people around the world joining donor registers every day (which currently stand at 26 million).

Though we can't know for sure, it's more likely that Casalotti's campaign will help scores of people from these backgrounds in future, as it has (and may continue to) increased donations from much-needed groups. To that end, the Match4Lara campaign is continuing: the family has said that drives and events over the next few weeks will go ahead. 

You can sign up to the registry in your country via the Match4Lara website here.

Barbara Speed is a technology and digital culture writer at the New Statesman and a staff writer at CityMetric.