Thursday, 7 March 2013

ESAendgame and Me.

So, I'm hauling myself back from the shadowy realms of the dead blog god's domain. Not just for epilepsy this time either, though that is why I started this little space. Today though, I want to talk about a bigger issue.  A wider one which affects hundreds of thousands of people up and down the country and has led to hardship, despair, fear and even death. I'm going to be as impartial as I can in this blog despite that though, and lay out just what the system is that people are protesting.

For a long time now, I have been a recipient of Employment and Support Allowance, or ESA as I will refer to it from now on. This is the benefit that replaced the old Incapacity Benefit, and is a benefit for people who are too sick or disabled to go on Jobseekers Allowance.

That point is worth repeating. This is a benefit for people whose health prevents them from working as an able-bodied or fit person can. Obviously, this is a wide ranging bracket, so ESA is split into two groups. The "Support Group" is for people who are incapable of any kind of work, and who are highly unlikely to ever be able to. The other group is the "Work Related Activity Group" (WRAG), for people who probably could work, or whose health condition may not be permanent, but still, they're not fit or able-bodied enough to look for a conventional job as would be required by Jobseekers Allowance claimants.

People in the WRAG (such as myself) are encouraged to participate in "work related activity" such as training programmes, voluntary work or work focused interviews - some of which are mandatory unless you are a lone parent with younger children.

By far the biggest hurdle people face, however, is getting placed into a group and then staying there. Claiming ESA is easy enough, at first. You go into the assessment phase and have to provide notes from your GP stating that you are not fit to work. And if your GP is willing to state that, then chances are, you aren't. Because a doctor that knows you and your medical history (and all the back and forth between any specialists you see) can make that judgement, and is hardly going to lie. I see my GP a lot and he recognises me when I come in, but I can't for the life of me imagine him or any other GP committing fraud on mine or anyone else's behalf.*

However. When you apply for ESA, it's not just a matter of providing doctor's notes. You also get put on the list for a "Work Capability Assessment" or WCA. This is an interview process outsourced to a company called ATOS, wherein a "doctor" who has never met you before over the course of one interview decides whether or not you are as sick as you (and your GP) say you are. This would be problematic enough on its own, but ATOS has a track record for getting the decision wrong. (Note: that article is two years old and yet ATOS are still in charge of WCAs)

Terminally ill cancer patients have been found fit to work. People with severe epileptic seizures have been found fit to work only to die a few months later from those same seizures. Profoundly sick and disabled people have been left destitute, forced to appeal decisions which took away their only income, and 40% of those appeals against ATOS are being upheld. 16% of ATOS's decisions overall are being found to be incorrect.

The principle behind ESA - to support the sick and disabled who cannot work, and provide the correct assistance to those who can work to help them find employment - is one that few disagree with. People want to work. I want to work. But I also don't want to go through the stress and fear of waiting for a letter to arrive on the doorstep telling me that a stranger I have never met has decided that I don't need that extra support.

WCAs are repeated. The "brown envelope" that comes through the door periodically can re-summon you to display your incapacities, or demand that you fill out an exceedingly long form with tickbox options to display how you are sick or disabled. This side of things is the other problem with ESA. Sickness and disability does not fall into neat little tickboxes. Yes, some people are demonstrably disabled or sick. Blindness, cancer, use of a wheelchair, the lack of motor control to pick up small items, these are all tangible ways in which some people can "prove" they are disabled.

What, then, about those with learning difficulties - those who spend their lives trying to appear normal, only to be forced to tell a stranger all the cannot do; those with autism or aspergers who are severely traumatised by having to talk to a person they have never met; those with mental health issues whose health rapidly deteriorates from the stress and fear of having to prove themselves and the prospect of losing everything if they can't; those with conditions which vary, such as ME or fibromyalgia, with few "tickbox-worthy" symptoms but whose lives are dominated by these problems?

The answer is that many of them are found "fit to work" and shunted onto Jobseeker's Allowance - only to be told by the jobcentre that they are too sick to work and therefore cannot claim that benefit either.

This is a system which is deeply and inherently flawed. It was flawed from the outset, too, because it was designed to save money, to reduce the welfare bill. Let me direct you to my asterix point below, and that 0.5% fraud rate. The only way to reduce the cost when there is a remarkably low fraud rate on a particular benefit is to take said benefit away from people who are entitled to it. This is what has happened. ESA has been taken away from deserving people so as to reduce the welfare bill. And as a direct result, people have died.

This is where the ESAendgame campaign is coming in. Such a system, which knowingly lets down society's most vulnerable people, has to change. Has to be replaced with a system which supports and works with them, instead of against them. And to do that, we need everyone to work together, to stand up and make themselves heard, to say "Not In My Name", and demand that change comes. Now.

*As it happens, the proportion of ESA and DLA claims which are fraudulent is around 0.5%


  1. Brilliant summary!

  2. Well said!

    Don't forget that the appeals rate for ESA rises to well over 70% where the claimant is supported by CAB, DIAL, sympathetic MP, etc - even more of a damning indictment of the capabilities of ATOS!

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  4. That's it in a nutshell. Personally speaking I can't thank the British Legion's welfare officer enough for looking after my partner's appeal after the ATOS nurse assessing him made sweeping judgments without having any knowledge or experience with his condition & actually lied on the report.

  5. Really good article - Marjorie's point is an important one. Legal aid is being taken away for appeals from 1 April this year. Many CABx and Law Centres will be losing their specialist staff, and there will be no legal aid funding for GP reports to support claims. Will lead to huge injustice.

  6. Excellent article.

    I have epilepsy myself (Left Temporal Lobe, diagnosed in 1989 when I was 17) so I can understand how profound an impact it can have on your life.

    Just been put on the Work related Activity Group myself, didn't need an interrogation by the Witchfinder General down at ATOS. Having a supporting letter from Neurosurgery Dept at Kings College Hospital might have helped there.

    I can't work because of over 200 seizures per year, and motion is one trigger (train, bus, car... all can trigger complex partial seizures or tonic-clonic seizures) stress and crowded places being other triggers. Strangely, decaff coffee can make me have seizures too. No idea why tbh.

    DWP next for Work Focussed Interviews. What fun.

    Best wishes and good luck for the future.