Wednesday, February 22, 2012

Stephen's ESA Migration Experience

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 same boat.

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.


Gary Miller said...

Thanks for sharing. :-)

One piece of advice I would give anyone going through this nightmare is: Get yourself a really good benefits advisor.

Vic said...

Thank you both ever so much for writing/recording this. I have to echo Gary and say - if you can find one - do get an advisor.

Also I did read that, unless phones are easier for you, it's a good idea not to put your telephone number on as the DWP are now doing assessments or semi-assessments that way. Maybe a little paranoid...

Gilly and Mick said...

Thanks Stephen, this has given me a bit of hope...I am struggling with my ESA at the moment, every time I start to do it I end up crying...Having to go back over the time of my accident and focus on whats wrong with me makes me feel shit and flares up my PTSD. I keep tyring to avoid it, have gotten depressed and am not sleeping well. Have seen my GP now ...but I still have to face this form and it feels like a huge wall that I cant get over...however your helpful blog has given me a few steps up , so maybe I may get over it.

Stephen said...

@Gilly and Mick

I'm so glad you found this at least a little bit helpful. It's such a stressful thing to deal with at the best of times, and with the sleep disruption it must be a bit like a living hell. But these things are finite - you will get there eventually. Good luck with it and I'll be keeping my fingers firmly crossed for you.