Nearly 7500 words....
That weighty number is the final word count for the ESA form I finally finished a week or so ago. I toiled for some 15 days on the damn thing, doing some until I felt too ill to carry on. Slept for a few hours and then toiled some more. Very early on I realised that I simply can't cope with filling in something like that anymore. It has taken me this long to feel up to writing about the experience.
To be honest I can't do anything much that an able-bodied person would consider trivial. A simple example. We have had a self install upgraded cable modem from Virgin which has been sitting upstairs since way before Xmas. I've had two text messages from them asking me if I had a problem installing it. If I needed support then give them a ring and they could talk me through it. Doing it wasn't the issue was it, I can do all that standing on my head. Or rather I could. No the problem was that I couldn't get upstairs and sit on a normal chair long enough to do it!!! Eric can't do these things, so it has been a case of waiting till I felt up to it. that in itself being a contradiction in terms. I never feel up to doing anything. If CRPS had it's way and I wasn't the stubborn, cantakerous wotsit that I am, I would do nothing. That means absolutely nothing, not read, play games, get up, go out at all and certainly not do those mad activities like speedway and archery that define my battle to do something I enjoy!!
Anyway the day had come so I went for it. It was torture, had to phone up to activate it which seemed to take forever. Not aided by the fact that it was really hard to understand what the person I was talking to. By the time I'd done, I couldn't move, was in total agony and I somehow had to get down the stairs back to the comfort of my chair. I don't know how he does it, but Eric cajoles me along and we somehow get there together, I crashed out almost immediately and when I woke....well let me just say I felt I'd been hit by a very large lorry. Legs utterly off the scale, world spinning etc etc. Good old Oramorph, helped me as it always does, but it was just another reminder, if any were needed, so how little I can do.
Which brings me back to the ESA form. I got the brown envelope a couple of weeks before Xmas, had my telephone call, with, what seemed to be a very nice person at JobCentrePlus. The form arrived and seemed pretty similar to the Incapacity Benefit forms I'd filled in before. Having read so many horror stories about people being placed in the wrong group, the way they interpret the form in ways that beggar belief, and of course the flawed face-to-face assessment I was determined that they were going to get the fullest picture of what CRPS has done to me, it's impact on my life and health. Most importantly I would do all I could to explain in as much detail as I could manage, how coping with life is hard enough, and how, much as I wish I could, work is about as far away as the moon.
I had downloaded a guide to help with filling in the form. It is scary the way the form can interpreted in a completely different way to how the question is phrased. For example the 'imaginary' wheelchair. If someone can't move 50 metres unaided or use crutches etc, they can award points on the basis that if they had a manual wheelchair and they think the person could push themselves along for that distance then they get no points. Doesn't matter that they haven't got one. This 'logic' is set to be expanded on 28/1/13. This will bring in 'imaginary' guide dogs, prosthetic limbs. They are even going as far as to say that if someone hasn't had all available treatment options available then they will be awarded on the basis that if they did they could get back into work. How on earth a decision maker will have the necessary knowledge of every condition to make such a decision is beyond me. Scary? Terrifying? I'll leave you to decide....
Early on I decided to go the electronic route. Could phase and re-phrase, say exactly what I wanted with more space to get the detail in. Looking back it is safe to say that the form is completely inappropriate for someone like myself who can't concentrate for long. Every section takes forever to fill in when you have a complicated set of symptoms like CRPS. There is so much to get on paper, if you are going to properly explain, and show what your situation is. Even trying to explain just how much is involved in getting me out of the door to attend an assessment and the problems I may face when there took far more space than the box allowed had I handwritten it.
As an aside it wasn't until I tried to print the form at the end that I realised the boxes have no limit on characters. Printed you couldn't read the text at all so I then had to cut and paste enough into the box to make it legible and then put the rest of the text on overflow pages. Don't forget I was a teacher so I have the knowledge to deal with these things. There are so many people out there who can't. What are they supposed to do? Is it any wonder that people are being put in the wrong group when the form sets them up to fail? What about those with mental health issues? How on earth do they fill in the form in the first place? There has to be a better way surely?
I spent some time every day bar a couple filling in that form virtually from the day I received it. It was horrible and incredibly stressful. not good when stress only provokes a flare in all your symptoms. I woke each morning exhausted from the day before with my legs worse than before. My eyes were really painful because I was looking at the iPad too much and they can't cope with it. CRPS again. Despite this I had to tried to focus on writing some more, or re-writing what I had written to ensure it made sense. I cut and pasted from previous applications and then re-jigged it. Just as well we are organised and have electronic copies of medical documents from Consultants (thanks go to Eric for that) so could just print a load of supporting material off to go with it. When I wasn't working on it I was sleeping. Well crashed out really, having had to stop because I felt so terrible. When I woke, it was back to the form. It hung over me, especially as I had to get the form back to them before 22nd January. I even got another letter pestering me that they hadn't had the form back. Dated 13th January. I was stressed enough, without that I can tell you!
I worried that I would never get it done so looked into what happened if I couldn't. Draconian measures to say the least. You have to write a letter explaining why you didn't get it done. Err, I'm in no fit state to do it at any time, let alone in a few weeks! Laughable, but then all people on sickness benefits are scroungers anyway aren't they? It makes me so angry... Anyway, having sent the letter, it is up to the decision maker to decide whether your reasons for being late are 'acceptable'. If they decide not then they can refuse to look at the form, reject it and declare you fit for work. It beggar's belief doesn't it? How can vulnerable people be treated like this?
I did get the form filled in thanks to my husband and a wonderful, close friend (you know who you are my friend) who proof readit, and got it off in time. Their reassurance was so important. What was left of me by this stage was someone incredibly stressed, struggling with a major flare, exhausted, mentally drained and terrified that I hadn't done enough to explain my condition, the impact it has on my life and the problems I have doing anything. It is still hanging over me, and will do until I hear from them with a decision. I am really hoping that they will put me straight into the support group without an assessment. I don't see how I can be put anywhere else but who knows? It's on my records that I shouldn't be called to a medical because of the severity of my condition. Will this matter? Ordeal springs to mind about the whole process. I have absolutely no way of replacing the income should they reduce my benefits, so where does that leave us? Exactly as we are but worse off. So we wait for the next brown envelope or a phone call telling us what happens next.
Don't get me wrong, I am all for uncovering those people who claim to be disabled when they are fit and able. But to treat everyone as if we are 'scroungers', 'on the take' is so wrong on many levels. The Government claims that they are supporting those who have genuine need. Well if anyone fits into that category I do. We shall see in the coming weeks whether the Government really does mean that. Or whether it's just about saving money by targeting those who can't fight back.
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