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Charcot-Marie-Tooth UK
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ESA Medical Assessment

Hi, My name is Jenny and I have CMT1 and for the last 4 months I have been signed off with stress and anxiety which pushed me to hand in my notice at work.I have been claiming ESA due to advice from my GP and also Citizens Advice. Tomorrow I have a Medical Assessment appointment to go to and frankly I am stressed out more due to some stranger that may no nothing about what CMT sufferers have to endure on a daily basis. Due to how this assessment goes the DWP may decide that I am fit enough to work and may stop my ESA payments. I also have to deal with my balance issues and weakness in my lower limbs and hands. Any advice would be greatly appreciated.

6 Replies

Hi Jenny, I haven't had this assessment but I have had similar. I think its really difficult to be clear about how CMT affects you, & exactly what happens when you loose balance etc. How often do you fall? Does it leave you dizzy? how often do you get pain? Practice all those questions with a friend as if you had to explain to the daftest person on the planet. Hope it goes ok, Lynne.


Hi Lynn

Well had my assesment today had to wait 1 hour to see a doctor.

Very nice lady who asked all sorts of questions about my balance and pain in lower limbs.

I fell over last week and still have lower back problems but I am now paranoid about falling again and making it worse.

I have even invested in walking poles and a walking stick just to give me that extra stability if I venture out.

Thanks for your reply to my post.

1 like

Great Jeffer! I'm glad it went ok despite the long wait. Falling makes you loose confidence in yourself for a while, I found. Glad the stick & walking poles help, I use 1 crutch now cos my hand won't reliably hold anything. Take care, Lynne


I have no faith with Atos or Capita who carry this work out for the DWP especially when the so call Heath expert said he had just checked online what CMT was just before the assessment

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I thought we were supposed to be able to see someone who understands neurology? ie a doctor? Or maybe that is just pip. To others 'just looked it up online' is a throwaway comment that they mean to be lighthearted and jovial, they don't understand the seriousness of the matter. Be prepared to use the complaints system if need be!!


Hi Jenny. Renee here. I have also just recently resigned from my job as I was struggling physically and emotionly. Financially now I am worse off as I don't get any pip and I haven't applied for any help as they say my husband earns just over the threshold. No one knows how badly this affects me. My mom who I inherited this from only has very mild symptoms and. When my mother was my age 43 she didn't have any of these issues and only seemed to present them selves to her now in her 60's. I worry sometimes what I'm going to be like when I'm 60. I also fall often due to my wonky balance


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