Charcot-Marie-Tooth UK
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ESA medical farce

I am 39 and have CMT type 1a. Last May I had a medical to move from Income Support to ESA. I was put in the work related activity group with a score of 17. I didn't receive this decision until the end of October.

On November 12th I received another medical questionnaire, so I rang to query this, explaining CMT was degenerative etc, was told I was under 3 monthly review and as it was overdue (due to their tardiness in sending decision) I had to return it.

I went for a medical on 2nd January, only to be told there wasn't a doctor available because my form wasn't read correctly,the standard medical couldn't take place as they are done by "healthcare professionals" who don't know about neurological conditions and would be re-arranged, (the EXACT thing happened last year, the medical in May was my 3rd appointment due to their incompetency)

Today I have received a phone call stating the new decision was being sent today and as I received ZERO points I'm deemed fit for work.

The lady assured me if I appeal that my benefit won't decrease whilst appeal ongoing, which is unlikely (I worked on DLA for 14 years before I was dismissed on grounds of ill health, so I know that normally, benefit would stop.)

I'm also trying to get my Civil Service pension paid early which would help me financially, but I'm not too optimistic.

As well as CMT, I have Arthritis, Sleep Apnoea, Restless Leg Syndrome and Depression, so I'm not exactly a viable option for a prospective employer. I now walk with a 3 wheeled walking frame too as my balance is poor.

I'm at the end of my tether, I am going to appeal obviously, it would be nice to know if anyone has any positive experience of ESA as it seems to be an extremely unfair process.

It is staggering that in less than 12 months I have been subjected to two medicals with unbelievably different outcomes.


14 Replies

Hi, so sorry to hear your story, I too am a CMTer but haven't had any problems like you described, I do hope you get it all sorted out and soon x



The best place to get expert, impartial advice is through - I've just been reading their scary stories about the shady dealings that go on at the DWP.

For most of the information, you need to be a member of the website, which CMT UK are - you can log in with our username and password, which are cmt and frame2 respectively.

I do hope you get this sorted out!



It is costing the country millions in appeals regarding ATOS,therefore if a person has sadly got any Neuro degenerative disease then what is the point the clue is in the name its going to get worse not better

a poorly thought out policy


Hi fuzzface very sorry to hear about your predicament i was having the same sort of problem. I am a cmt'r also with 1a and my 1st medical i was given enough points after writing a letter and appealing. and was ok for a year and then had 2 more but given no points again. So i found the 1st thing to do is put in a appeal via the job centre plus, that will keep you your benefit although at a lower rate untill your appeal is over and if you are successful you will receive the difference back from the date you put in your appeal. My argument was the fact like you say its (degenerative and will not improve) so i pointed that out and stated how can i receive enough points 1yr and none the next when my illness hasn't and will not improve. The system is all wrong and unfair at the moment but ....and it is a very stressful time for us but i would advise you to get as much help from your friends/family who know you. Get your GP on your side "if they understand the illness" "possibly not" and if you have history obtain your GP medical notes. Also get the form from benefits and work website so you can see the questions that they look at and go threw it being true to your self obtaining points form the scrptor's that directly effect you.Then put together a professional looking document that highlight all the points that they look for. I have a really good friend who helped put this together for me as he understood how to put together a document. Remember to get as much info (personal and medical) together to support your case, Always go on how you are on your worse day let them see how you are effected, it may be a bit embarrassing or demeaning but its only for a short time, and worth it if you win the case, which if you do all this properly you have a good chance of doing. As I finally did. and many

do. And you have the option of having a court hearing or a paper hearing go for the court hearing as you have far more chance of putting your points forward and they can see how you are effected. I am under no illusion tho, i may have to do this all again at some point but I got a decision in my favor and they recommended that i do not get called for a medical for two yrs. Although this cannot be enforced. And that only because of my age they placed me into the wrag, which i haven't yet started. But if they manage to find something they think i can do i would be willing to give it a try and at least if i cant they will see it, and how hard i am finding it. But please try to stay strong get support, hang in there and fight your corner as, for everyone of us that wins their case hopefully gives others the strength to carry on and find strength from this. I know my limitations unfortunately they don't and it may take them putting me in a work situation to see this.

so i wish you all the luck with your case.


More and more people are being thrown off ESA for varying reasons but basicially their criteria has changed in the last 12 months which is why you probably did not score enough points. ATOS receive a bonus for people they deem fit for work which is why more and more people are having this problem. My husband has cancer and is partially sighted and he was told he was fit for work until we put an appeal in (it took me 5 hours to prepare it) but it was worth it in the long run as he is now in the support group and has been told he will not be sent for for a minimum of 2 years by which time he will be 64. I have CMT but can manage to work part time because I have a very understanding employer but they are few and far between. Stay positive and yes you must get your appeal in I have heard now that they stop your benefit until your appeal is heard but not sure how true that is. A useful book to have is the Disability Rights Handbook which covers benefits and I found this of tremendous use.


Hello "fuzzface".....

It's totally incredible/incredulous what our UK Government is putting their citizen's, with a Medical Disabilty through !

It is nothing short of 'mental-cruelty', and following the UK treasury's attack on freezing our pensioners personal tax allowances, they now turn their "big-guns"(Ian Ducan Smith)on, to target the sick, and disabled citizens, in our society !

Most incredibly they award a £100 million contract to a FRENCH ? ? ? company called Atos to review all recipients of ESA benefit, and Disability Living Allowance:

The Department of Work and Pensions, (D.W.P.) "moved-the-goalposts" to alter the existing criteria, thus ensuring, and demanding that a minimum of 20/25% of Cmt sufferer's will lose their benefits:

Atos must meet this target, or pay the DWP fines as compensation, for failing to meet their targets !

Some Atos "whistle-blowers" have told of 'non-health' professionals being employed, and also being given verbal warnings, "you are not failing enough claiments" ! ! !

Heaven help us all, as Cmt is a progressively worsening, neurological disease : It has no cure, it can only cause suffers further, and continuing muscular atrophy, and 'lower-limb'(s) deterioration:

Most medical health professionals can go through their whole medical career, without ever encountering a 'single' case of Cmt :

Best of luck to you....

John (Glasgow)


Thanks for your replies guys, I have my first interview at the jobcentre tomorrow with respect to WRAG, which I will attend as I don't want to risk benefit sanctions.

I have an appointment already with my GP on Friday, so I will ask his advice and support.

I spent a few years working on DLA appeals so I'm ok with the forms and process.

Fingers crossed ...


dear fuzzface, my partner and i have done a lot of research, both our Work Capability Assessment as due imminently (I have CMT. she has something even harder to describe) . our advice is take it to appeal before clause 99 of the Welfare Reform Act comes in to play in April, and you can't appeal. better still take it to Judicial Review. one day Atos, the DWP and their masters will get theirs...

very best wishes...


regarding Clause 99 by the way:

Clause 99 has been introduced to make appealing wrongful decisions that the disabled are fit for work almost impossible, because disabled individuals waiting for there ESA tribunals have their benefits stopped (including housing benefit), and, the only benefits they are entitled to claim during, this undisclosed waiting period, is Job Seekers Allowance (JSA) and in doing so the disabled claimant enters in to a contract declaring themselves fit for work. Clause 99 should be really called Catch 22.

Thus the sick and disabled people are effectively being silenced by this government, and the evidence that this is an undignified and grossly unfair system of “assessment” is being hidden. The DWP own statics claim that 35 disabled people a week die after being declared fit for work by the Work Capability Assessment. It is terrifying that instead of addressing this, they have made the system even more brutal, de-humanizing and unfair.


..I am also wondering about a Class Action for folks with partner looking for a lawyer right now anyway, here is my email address

best wishes, Sean & Layla


Thanks Sean, still waiting for decision to drop on my doormat, I'm going to appeal immediately and will be requesting an oral appeal.


good luck, I hope you get the decision soon...

best wishes, Sean


Decision came today, though slight bombshell, the lady who told me my payments would continue was apparently wrong. Benefit has been stopped, £43 to be paid on Monday instead of £198 next Friday, then on JSA rate which for me will be £66 per week due to repayment of social fund loan,

Appeal form completed, I'll send it recorded delivery today.

I'm not a happy chap and I'm expecting the bailiffs to come knocking as I know appeals take a while.


hi everyone Sue here i sent my appeal in last august and still waiting to hear when i have to go to court for my appeal it`s ridiculous, it stresses you out, i have cmt type 2 osteo-arthritis in my shoulder and neck think this iis due to all the stress and strain i put on them trying to carry or pick things up due to my cmt. Going to ring to see when my court hearing is due not looking forward to that.


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