ESA nightmare for me, oh joy!

Hi guys!

It’s been forever since I’ve been on here, after my last relapse in March last year I ended up stopping going on a number of places online; I either just forgot about them entirely, or my executive dysfunction problems had me just looking at the bookmarks but unable to click on them, message not getting through! Recently I got a postcard from an online friend, and that triggered a connection and got me onto Skype again, and since then other people have helped me work around some of the other ED caused blocks by linking me to places. Hence me being able to see an old email from here in my inbox, so I got here by following the link in the mail. Wouldn’t it be amazing if all problems had such a simple fix?

Because it seems getting back on here is somewhat portentous. Saturday before last I FINALLY got my ESA assessment (it was April 2014 when I started on ESA)…it didn’t go well, not at all. The chap was nice, no complaints there, but I did very badly. My combination of brain problems meant I was totally unable to deal with the situation and give him the information that he needed. My information retrieval abilities in situations like that (as I know realise) are appalling; even with notes (they just confused me) I didn’t manage to tell him the things that he needed to know. Even when he asked questions that should have triggered the responses that he needed I failed completely.

For example, he asked if I had problems with fatigue, all I said to that was, “yes, always”, he didn’t ask me to elaborate so I didn’t. I didn’t tell him that mental activity like social interaction wipes me out completely, how I can barely think the next day.

So much stuff, but I’m struggling with getting this down so I’m not going to try and remember more, I need specific questions to be able to respond to, does anyone else have this issue? I can’t even answer something like, “what would you like to drink?”, it’s too big a question, I need closed questions like, “would you like a cup of tea?”, something that requires a yes or no answer.

ANYWAY…the point, I get there eventually…I was wholly expecting, because of my fail performance, that I’d end up in the WRAG, and was trying to prepare for appealing against that by getting some better notes together as it was plain to me that I need to write everything down as I think of the right words, and have someone read it. Because I’m never going to be able to explain things in a face to face situation, I just don’t have the processing speeds, word finding or information retrieval to be able to deal with questions that need immediate (and informative) answers.

I get a call from the DWP today…because of my assessment I’m judged as not being entitled to ESA at all, and it’s being stopped…I’ll get a letter in a few days to confirm this.The girl on the phone (she was nice) said the assessment mentions MS and memory problems, nothing else. So because of that I’m deemed as being able to do some kind of work…

Quietly falling apart here. Going to call a helpful lady that I saw at the job centre last year in a bit, and see if she has anything helpful to suggest. Just really want to talk to a professional I suppose, I need to find out what I need to do about informing the council about my situation change, are they gonna stop my housing benefit…urgh!

I SO don’t know what to do right now

So yay, welcome back me, right? Sorry to re-appear and drop this on you guys, but you will UNDERSTAND.

Hi, that sounds hard on you. The CAB I would of thought can help you with this.


If someone has memory and severe cognitive problems, like you…how can they do a job? It doesn’t make any sense! You need further professional help and advice to challenge the decision.


Do you have a local MS branch if so go and see the benefit officer they will help you fill out the forms with the correct information needed.

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It doesn’t make sense does it, Poll, but I didn’t get to tell the assessor about my current cognitive problems, and I can’t remember what I put on my esa questionnaire (I didn’t know/think to keep a copy of it). I had problems then, but I’ve had 4 or 5 relapses since I filled that out all of which impacted on me cognitively, (and I filled the thing out myself, WISH I’d got assistance with it from the CAB) so I doubt I managed to word things the right way anyway.

I TRIED to get to tell him. He was talking in a “wrapping up” tone and I said that I’d not got to tell him about all the things I had written down. He said not to worry, he had all the info that he needed on the computer. Meaning the survey I filled out before I suppose, I said but that’s 21 months out of date (think it’s actually about 18 but whatev). He again told me not to worry, he had what he needed, he pointed to my notes and said those were for specialists.

I was so confused and overwhelmed by then that I just couldn’t find the words to try any longer to be able to tell him any more.

Jak no, there’s no local branch. Not here in town I mean, looking on the “near me” tab there’s one in Lincoln. At least the phone number’s a Lincoln code. Lincoln’s 20 miles away and I’m not really up to public transport; fatigue and struggling if I go to far on foot sees to that. If I can get enough brain cells together I’ll hopefully email them at some point. I don’t know when I’ll manage that though. Not today that’s for sure, time spent on the phone to the DWP, the Job Centre, the council and the CAB has used up my brain function for today, and will likely render me completely useless for tomorrow too.

I feel I need to make contacting my MS nurse a priority, because you need medical back up don’t you, when you ask for a reconsideration. If I can get another appointment to see the neuropsychologist that tested me in 2014, and physical tests done maybe, I’ll have something to help me get an accurate assessment, I hope!

So hopefully tomorrow, but more realistically Friday, I’ll have to start composing an email to my ms nurse, and trying to get that to make sense…

Hi jellysundae

Welcome back. You will need to ask them to reconsider their decision first, you have to do this before you can formally appeal against the decision. I suggest that you get a letter from a doctor who knows you have cognitive problems (if this is possible) or you MS nurse (if you have one) or anyone at all who knows you have these problems. In the letter they need to describe the problems you experience, the account you’ve written to us is a good explanation of the problem, so try printing this out, show it to whoever you can get to help and ask them to write a letter that supports what you are saying. You have one calendar month from the date of their decision to ask for a reconsideration.

A very helpful website is have a look at this and think about joining, it costs about £20 but it’s worth it for the help you can get from their guides to benefits. ESA especially. Also as Lenney said, try the CAB for help, or if your local council has a welfare rights service, get some representation from them.

In order to get your ESA back, and hopefully into the support group it is going to take some form of evidence of your cognitive problems, as you call it your ‘executive dysfunction’ particularly your information retrieval. The trouble is that when you are seen by someone who doesn’t know you, they can’t make an informed decision. You should if possible, try to get someone who knows you and your problems to accompany you to this kind of interview, or a letter from someone medically qualified to show the interviewer in order that they can tell that you really aren’t capable of answering questions effectively.

Hopefully you’ll get some help and get your ESA back. Best of luck with it.


Hi I’m so sorry for your recent problems and your response from DWP. I can only repeat the advice others have given you and perhaps stress that you ask both your GP and MS Nurse or Neuro for letters stating your condition and the problems it presents you with. The more information you can give them can only be a good thing.

Good luck with your reconsideration, I hope it doesn’t have to go as far as appeal.

Best Wishes.

Jan x

Thanks for the well wishes guys, it’s very much appreciated, believe me! My mum’s been looking online for me and says that I need to chase up what the DWP told me yesterday about my ESA being stopped. Because I claimed in April 2014 and only just now finally got assessed, my claim predates a ruling that came in in March 2015 where people who are refused ESA have the benefit stopped while they go through the reconsideration etc. So mine shouldn’t be stopped.

Trying to get my head together to face calling about that now. I have notes that I took as mum told me things over the phone, but I need to set those out better so I can refer to them more easily and hopefully avoid confusing myself too much.

If I can just be told that my money’s not going to be stopped then that will take some of the mental strain off me and I might be able to focus a bit more successfully on the email that I need to send my MS nurse.

Hmm, so after talking to the DWP (and reading some stuff on here ) it seems my ESA will still be stopped during the reconsideration process, but if things go my way it will be backdated to the date it was refused.

So I need to get a letter, with medical back up, sent in as quickly as possible.

A simple sentence that, containing such a massive about of difficulties and stress…