Migration to ESA

ESA 23

Written evidence submitted by Julia Cameron 

Summary: My concerns as a person with long-standing ME/CFS facing the WCA.

1. I receive IB and am waiting to receive the letter calling me to be assessed for ESA. I have been unable to hold down a paid job since contracting severe ME in 1989, but when I got sick I had already been working only 3 or 4 days a week for many years because of ongoing fatigue and susceptibility to viruses. I found this was the only way I could keep myself afloat. My GP didn't seem to know what to do with me when I had a period of post-viral fatigue in my early twenties, so after that I pretended to myself and everyone else that there was nothing wrong with me and that it was a choice to work part-time. But it wasn't - I already had a form of chronic fatigue syndrome. Thirteen years later the sudden and severe downturn which became ME made me literally too sick to get out of bed and I had no choice after many months of no improvement but to give up my job. After a couple of years of severe illness my condition improved somewhat but I never became well enough to hold down paid work, and I deteriorated again 12 years ago. I will be 60 next year and have realised that over the last few years I am continuing to go downhill, despite having tried more or less every possible treatment for my condition, the few available on the NHS and many alternatives. Of course, worrying about losing disability benefits does my health no good at all.

2. Four years ago, after some private treatment made me a little better for a while, I started a very part-time voluntary job in an office. It was a great job for me as it was with an organisation whose aims I supported and it used some of my old skills. It was very local, entirely sedentary and only 7 hours a week, but even this had to be split between two days as I can never be active for more than a few hours even on 'good' days and must always sleep or at least rest horizontally in the afternoons for at least two hours. If I try to get away without this my condition rapidly gets a lot worse. I loved the job and thought I could cope with it for those few hours, in fact I initially hoped it might be a stepping stone to longer hours and maybe eventually a paid part-time job. But sadly, over the next 3 years my condition deteriorated further. Even working half a day twice a week was too much for me to sustain on a regular basis and eventually, very depressingly, I had to accept I must give the job up. I have spent the following year trying to repair the damage done to my condition - I have not fully succeeded. So my health, which was already very poor, is now worse than it was 4 years ago, because of attempting the most part-time work.

3. Despite this, reports about the way the WCA is carried out make me concerned that I might fail it, because on brief examination I can appear 'normal'. But with M.E my major problem is post-exertional malaise and extreme fatigue, which means I might be able to do something at the time, but will pay for it by hours or even weeks in bed depending on the degree of exertion. Even what would appear very mild exertion to most people can leave me so ill I go into a sort of stupor and am unable to speak. When you see me looking 'normal' it is because I have managed my very limited energy extremely carefully so that I can be functional for short periods of time. This is something I and disabled people with a variety of impairments have had to learn to do, and the degree of planning and organisation that it takes is mostly invisible to and unappreciated by outsiders.

4. I can't think of anything I would like more than to be able to work again, and I wish this and all governments understood that most unemployed disabled people would like nothing better than to earn their own living. We are not 'work-shy scroungers' as depicted so unpleasantly these days in the media - as a trustee of a local organisation of disabled people I know my concerns are felt by many others. But even when I am fit enough to do some work-related tasks no employer on this planet would choose to employ someone like me, who can at best do so very few hours a week, and not even those on a regular basis. My condition means I often relapse quite unpredictably, and when I get a cold, let alone flu, I take many weeks to recover, months in some cases. If I push myself at those times I simply get sicker and recovery takes longer. I am someone who does not need to be 'encouraged' to work, rather, pushing myself to keep on working despite illness has led to my current situation. And in an economic system in which employers must make a profit and local authorities stick firmly to budget, I would never be a useful employee.

5. As more and more news comes out about the functioning of the WCA, the two types of ESA, and people being sanctioned and losing benefits entirely I am becoming even more worried, and the worry is worsening my health. If I qualify for ESA I am concerned about being deemed able to work at some future point, despite my age and the severity of my illness, and being put into the work-related activity group. As I am not well enough to undertake 'work-related activities' on a regular basis I am scared that I might be then be sanctioned and lose all benefits. If, god forbid, I was put onto JSA I simply would not have enough money to live on. The extra costs to me of being disabled are substantial and not covered by my existing benefit level, let alone if I lost £30 or £40 per week. If I were required to expend energy regularly looking for work my health would quickly take a further downturn. Combined with increased money worries and I could easily end up back in bed 24/7 and needing much more personal assistance. For which local authorities are now introducing charges, so yet more money problems. Some disabled people are talking of suicide in this kind of situation and I can entirely understand why. I hope and pray the government will see sense before forcing large numbers of IB claimants onto JSA or requiring us to undertake 'work-related activities' as disaster looms for many of us if the government does not change course.

April 2011