Charcot-Marie-Tooth UK
1,217 members492 posts

Advice Needed!

Can anyone tell me why all us sufferers are not exempt from these medicals with ATOS? My HNPP is really really bad at the moment, I have a floppy left leg and my hands are totally numb, I can't even pop out my tablets; thank goodness the weekend is here and my daughter can help me, but seriously why have we not been made exempt? I know a lot of CMT/HNPP sufferers can work but since 1999 when diagnosed I have deteriorated slowly over the years and heaven knows what job I could do without being a liability. I am due to have the medical early November and I am so so worried, should I just be myself perhaps and tell them that sometimes I have trouble wiping my own bac----e or try and tell them I am fine (NOT)

Advice please.

Thanks friends Pam

6 Replies

Hi Pam

Just be yourself. I had some good advice given to me once. When going to medicals and fillling out forms, do it as if you're having one of your worst days. Hopefully that will help, and stick it to them! I haven't heard anything yet, but I am worried myself.

As you say, why do we have to go through this stressful grilling?


Well you could start by blaiming the idiot Labour government who handed out benefits like sweeties and drove this country into near bankrupcy.

Secondly, the thousands of semi professional scroungers around the country who have spent years perfecting the art of milking the benefit system.

As a nation we now have to sort the wheat from the chaff which sadly means we CMT sufferers have to go through the system.

There is nothing wrong with people being scrutinised correctly providing those really in need receive the support they need.

ATOS is not a suitable organisation to undertake this work particularly as they receive cash incentives to decline claimants.


Pam , Phil is right. However some of us have paid our taxes & now need some help so we should not be tarred with the same brush! good luck Pam.


anyone who has a condition which is degenerative,neurological etc should be exempt once the medical reports has been submitted from the so called experts.........

i still work however this would seem a common sense approach but this government likes to brandish people has as SCROUNGERS


Thanks Barry for your response and I to have read about these exemptions, but do they still stand? I know they did a few years ago but now who knows!

All I can do is tell them how I am on a day to day basis and that our disease is a degenerative neurological one and lets hope they know about it. I doubt it though!



I don't think anyone is exempt from this cramp, including people who are terminally ill, but ,it live more than six month - I even read this week about a guy in a coma who lost his ESA because he didn't complete his form!

The trouble is, if they exempt certain conditions, or groups of conditions, it opens a can of worms for the "system" - don't get me wrong, I'm not defending this system - but if we have to be subjected to this nonsense, at least it should be done, more or less, across the board. It's just the way it's done that riles everyone, with ATOS being one of the most incompetent and unfeeling organisations ever.

Check out for great advise as to how to complete the forms, and appeals. If you need to log in as a member to access the information, you can log I. Using CMT UK's log in - username is cmt and the password is frame2



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