Several of our friends and contacts are being migrated from Incapacity Benefits to the dreaded Employment & Support Allowance at the moment and a lot of people are anxious. Stephen has been through this and decided to share his experience in case it is helpful for people facing the same process.
Cross-posted at Single Lens Reflections
Link to the MP3 for download
Form filling is one of the most destructive parts of life as a disabled
person. In order to fill in a form properly, you have to look at your
life and pour your heart out onto paper, listing all the ways you don't
measure up, only for that to be judged by an annonymous force of terror
(who probably wears black and cackles all the time). I'm recording this
to share my experiences and hopefully to de-mystify the process.
Deborah, also known as the Goldfish, helped me with all the stages of
my transfer to ESA from Incapacity Benefit, and it is she who has come
up with what we think are the four most useful points to pass on to
other people. She's cleverer than I, so I'm going along with it all. OK,
so starting at the beginning.
The first point is that we were ready for an epic saga with dark nights
and long battles. Frankly, I thought ESA would turn into a bureaucratic
version of the Lord of the Rings. People are being turned down all the
time. When you see this, and people being placed in the Work Group when
that's inappropriate, it's hard not to imagine yourself in that
position. This is made worse when the condition from which you suffer
is one which is invisible or subjective or both. I have ME and this
causes me extreme chronic pain, fatigue, neurological symptoms etc.
Aside from looking a wreck, there are no tests that can be done to
prove or disprove this. And, indeed, there are people with ME who have
different, less severe symptoms and whom recover from it in a relatively
short space of time. There are many conditions which put people in the
Meanwhile, because of the particular luxury yacht in which we sail, we
are often people who live quietly at home and who only deal with the
medical profession when something new or interesting occurs. I saw a
pediatrician for many years, but since I turned eighteen, I've had very
little to do with doctors at all. As such, I don't have the backup of a
team of specialist doctors who understand every aspect of my health, my
lifestyle or my abilities (or lack thereof).
So you can see why I was in a bit of a state. But I can tell you now
that I was very lucky. I have been placed in the Support Group, and I
didn't even have an interview. This was the very best case scenario,
and I couldn't have dreamed of it happening. So that's a positive point
that others facing this transition should take comfort in; I may be more
ill than many people on incapacity benefits, but from past experience
and the experiences of others, Deborah and I considered me vulnerable to
being turned down and messed about with. Yet none of my fears were realised.
You'd think, then, having been put in the support group without
interview, that all the communication I had with ATOS would have been
stress free and easy. Alas this was not the case and given that lots of
people are worried about the transition, you should be warned about this.
The first telephone communication I had (to change the phone number on
which they'd contact me) was very easy and pleasant. The second phone
call (to check I knew what was going to happen) was likewise pleasant.
However, it was at this point that I raised the issue of face to face
assessment. I knew I'd not be able to travel to the assessment venue
and so wanted to arrange for a home visit where I could be at my best
and have others present to support me (something which I'd had
previously). I was told that this would be no problem and that I should
just write on my form that this would be necessary and they'd take it
from there. So the form came and we took our time. It was posted off
and seemed to take an age to get any response. I began to worry in case
it had not got to them. Deborah even phoned to ask if they'd recieved
it, but they couldn't tell us anything other than it might take a while.
Finally I heard back from them, but this came in the form of a phone
call to arrange a face to face interview despite my having specifically
said that this wasn't possible in my form. "Oh, no problem," says the
ATOS chap on the phone "You just have to make an appointment for the
interview anyway and get your GP to fax a letter in the next few weeks
to say you won't be able to make it. Then we can set about making the
arrangements for a home visit." As you can imagine, this was rather a
shock. It was impossible to arrange an phone appointment with my GP in
time, so I had to send a letter asking the doctor to write a letter to
ATOS and then fax it to them. Given that my GP only works a few days
each week, I had to do this straight away in order for there to be any
hope she could do it. I simply wasn't well enough to write a letter that
day, so Deborah had to rattle one off there and then, a feat which cost
her the rest of the day.
Of course, the implication was that if I couldn't get my GP to write
this letter, I would lose the benefit for failing to attend the interview.
My next communication from ATOS was a confirmation of my appointment at
the interview venue. It even included a helpful print off of the public
transport journey to the venue (90 minutes including 35 minutes of
walking). That didn't help stress levels. The final communication came,
however, in the form of a phone call to say that they had recieved a
letter from my GP (which I presumed to be the confirmation that I wasn't
able to attend the interview, but which turned out to be the original
confirmation that the information I provided with my ESA form was
correct and that I had ME and was in as decrepit a state as I'd
declared). Because of this, they'd decided to move me straight into the
Support Group and that was that.
What's the point of this saga? Well, whatever position you're in,
you're likely to recieve communications which suggest that no one
believes you're ill. To be given a route with 35 minutes walk when I'd
written in my form that I couldn't walk more than 20 yards? To
seemingly ignore my request for a home visit? It seemed a personal
attack. In reality, though, it's just a terribly designed system that
treats people as guilty at a base level.
My final two points are advise with the actual form filling. Firstly,
the form isn't helpful. Impairments are broken down into either
physical and sensory or intellectual and emotional. There is no real
place for the problems surrounding fatigue, cognative dysfunction etc.
It is up to you, therefore, to work those issues into the answers you
provide in the text boxes. We took a long time formulating answers, and
did the whole thing on the computer (finally printing the answers and
sticking them in, in a process not disimmilar to a primary school
project book. If only we'd been able to use glitter...). Anyway, the
point is that we had to be careful to write out these detailed answers
so people can understand how damaging these symptoms are and how they
render work impossible. We believe that fatigue and cognitive
dysfunction is a major incapacitating factor for almost everyone with a
chronic condition, be that physical, mental or both. So it's extremely
important you not let it get lost out in a form which seems not to have
a section for it.
Secondly, the law is very clear that in order to be able to do
something, whatever that something may be (walk up stairs, use a
telephone, discuss an issue with a stranger, etc), you need to be able
to do it "reliably, repeatedly and safely". Can you answer the phone
and talk to a stranger? Maybe you can. Can you answer the phone and
talk to a stranger several times over, as you might have to if you were
working as, say, a receptionist or someone working on a call centre?
Well, that's a very different proposition. The form does not even
hint at the importance of "reliably, repeatedly and safely" at any
point. That means that you have to make it obvious in your answers. I
can make a phone call. However, I have to be very careful when I do. I
have to set aside energy. I have to limit the time on the phone (or
else get a headache and neck/shoulder/arm pain) and if it goes on too
long I'm likely to not make much sense. I cannot make several phone
calls in any given day, or even any given week. If I had to make a phone
call this afternoon, or any afternoon when I've used the day's energy on
something else, it could not be done.
You must explain always thinking 'if I were in a job, in what way would
this symptom be an issue'. Spell it out and be brave.
So if you are, or will soon be, dealing with the ESA quest, remember to
keep your sword sharp and your shield high. And if possible, keep hope
in your heart. I wish I'd tried harder to heed that advice, but luckily
I had Deborah to keep me safe and hopeful. But I'm not sharing her.