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TOPIC: bad experience at my ESA assessment

bad experience at my ESA assessment 7 years 8 months ago #13463

I have severe chronic fatigue syndrome, and one of the worst symptoms is serious weakness in my shoulders which I detailed in my questionnaire. I can no longer carry a handbag or hang washing, or many other normal activities that put stress on my shoulders.

Unfortunately, another problem with CFS is brain fog, which gets worse when I'm tired. After a 30 minute taxi ride to get to the assessment, I then had to sit in the waiting room for an hour past my scheduled appointment time. And there was a very loud toddler in the waiting room. So I was already thoroughly exhausted before it started.

The first half hour of the assessment was answering questions. I don't even remember them all. Then she started doing the physical exam. This included a lot of range of motion exercises of my shoulders. If I hadn't been fogged up, I would have recognized this was a Bad Idea. Partway through, I stopped and said I needed to sit down, simply because I was growing dizzy and out of breath. But unfortunately, I should have stopped a lot earlier. My shoulders are now on fire, and I think I may be going into a flare brought on by this.

I think I should make a complaint. I detailed the problems with my shoulders, and post-exertional malaise, in great detail in my report, and the nurse should have recognized that I was not mentally well enough to know my own limits.

On the "bright" side, she approved my taxi expense (which I'd already decided to pay for myself, since going through the appointments line had resulted in them refusing to pay), so I think her report is likely to recommend that I'm unfit for work.

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Re:bad experience at my ESA assessment 7 years 8 months ago #13482

Hi Hope Ann,

I'd be inclined to wait and see what the result of the medical is before doing anything. It's hard to just guess what the result may be and lots of people with CFS/ME get ESA or IB as well as DLA.

Let us know how things turn out and we can try to advise you further then.

Good luck.


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Re:bad experience at my ESA assessment 7 years 8 months ago #13486

  • lavenderlady

Thank you for saying that you don't feel well enough to know your own limits. That's just how I feel. I have had CFS for 13 years and it is definately one of the problems I have.

I don't think doctors or nurses are trained about this. I think if you come across as intelligent they just assume you must always know at all times your limits.

However, from their point of view it must be difficult especially when a person is articulate and seems intelligent.I doubt very much that it ever occurs to anyone that we don't always know our own limits and by the same turn capabilities. One of the frustrating things for me it that often I come across as being a bit dense and dopey although inside I'm not. The words in my head and what comes out of my mouth often bear no relation to one another and I get in a muddle.

I shall certainly bear your words in mind anytime I am required to fill in another form or be interviewed.

On a practical do you think Ruta cream from the health food shop might help you. I only mention it because I use it for pain and stiffness.

Perhaps one way of viewing your experience is that in the same way when you have toothache the dentist has to prod around, causing more pain in order to determine what's wrong, so doctors sometimes have to prod about to determine what's what. They have to justify their decisions and we unfortunately have to suffer.

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