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 three or four
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
seven 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 three 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 four 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
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