Medical!! Has anyone kept their benefit? - Charcot-Marie-Too...

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Medical!! Has anyone kept their benefit?

Pam49 profile image

Hi has anyone with HNPP or CMT had one of these stupid medicals and managed to hold on to their benefits as a result of it? All I keep reading is the usual total negativity from sufferers as the examiners try to catch them out with silly questions!

I am beginning to get worried now as I have one on 11th Nov and I am so frightened of losing my benefit as it pays some of my bills, which eases my hubby's outgoings from his wages, as he is the breadwinner in the house, I honestly think we will struggle sooo much if I lost it, but I can't work coz of my disease and the numbness in my hands,feet and fingers,I have a dead floppy left leg and it constantly gives me pain even just walking a few steps. I have been diagnosed with HNPP since 1999 and only just been referred to a neurologist upon my insistence as I haven;'t seen one since being officially diagnosed, just palmed off with painkillers upon painkillers from my GP coz they just don't know enough about HNPP/CMT.

Can any fellow sufferers out there send me some good news, i can't even type properly as I cant feel my fingers hitting the keys so I have to keep correcting my new made up words. LOL! So any good news out there?


33 Replies

I have CMT and applied for benefit as I can't work, similar reasons as you but I failed the medical/scam. I answered all the questions honestly. Perhaps dishonesty is a way of passing ? just say everything is twice as bad as it is. They told me I had to sign on if I wanted unemployment benefit ? Good luck Pam

gunner profile image
gunner in reply to

Hi I am a Cmt sufferer also got a appeal coming up ulrich and agree you really need to answer the questions on the basis of how you are on your very worse day and this being the worse time of the year for all or most of us I think,as this cold weather really effects me and the thought of goin out in this weather all day, day in day out really wories me as it really adversely affects me and I find it soo hard to deal with. I feel that the fact that when you've been diagnosed with this disease why do we have to go to court to prove it? It must contravene our human rights in some way,? the same way somebody who is diagnosed with cancer should not be put through all this as I see our disease as a type of cancer although not medically life threatening but yet debilitating degenerative with no cure. So in several ways the same. So I agree maybe don't lie but slightly exaggerate as it will prob be more true in the near future if not now! Good luck to all who may have appeals coming up stay strong and keep fighting for yourselves and others who may not have the strength to fight. For our rights and no not to party :) as I can no longer dance :( and I liked dancing. Lal


Thanks for that advice and I am sorry that you have become a victim to this corrupt government.

Hi Pam, I applied for DLA as I can no longer work a full week and I only have my income to live on . I was refused and I appealed. I went to the Panel and despite having a fall and sustaining a fractured wrist, they would not take this into account! I was refused DLA as I did not meet the criteria. (Whatever that is) I confess in hindsight their irrelevant questions were to catch me out and to be honest I played my condition down as I felt belitled, despite working for local gov for the past 26 years, and should be more astute. Pam, don't do what I did. Tell them the real difficulties you have and don't play it down. I advise you to get a few friends round and get them to question you, before your appointment in November. I am sure this may have helped me with the questions from the Panel. Good luck Pam.

hi pam i had my interview a couple of month`s ago and they put me on ESA back to work,i`m appealing against this as i can `t go back to work. When you have your interview don`t answer a question with a yes or no because they`ll take it that you can do things, just say it depends. if you drive don`t drive yourself there get someone to drive you because they`ll be watching you. good luck.

gunner profile image
gunner in reply to williamalfred

Hi I have an appeal coming up on 12-11 and it has caused me soo much stress and work but with a lot of help I have managed to put something tohether and yet am aware they prob won't look at all the info. But I still drive thanks to motability if I don't keep this car I won't be able to keep my independence so even tho I know what u mean about not driving there this really should not go against us,that's why we get a vehicle to help us get around. We r being persecuted for trying to live and cope I think they would rather us stay in and vegetate and make no effort at all. However I will not be driving there either for same reason yourself didn't it's really stupid would like to know what the outcome was for yourself after your appeal as it does seem that nobody cares or fully understand how hard things are for us and even harder to explain. But I will not give up as I know I am no fake and will continue to fight these people and there perseptions of us Cmtrs and what we can do. Daily living is far different from working 8-10 hours every day which I know I can't do. I had a good job as a fitter very hard very physical I enjoyed it. I would not have given it up if I didn't have to.All my friends and family see my limitations so why can't atos, because u cant on a half hour basis interview that's why. Please let me know your outcome and if you can give any advice on your experience I would appreciate it thanks!

williamalfred profile image
williamalfred in reply to gunner

hi gunner i`m still waiting to hear about my appeal this has been going on since last august going to give them a ring tomorrow and see what`s going on


My dad is going to be driving me there and I have already been warned regarding the answers, much the same as what you have said. How long did you wait for your results from the medical? Have you got an appeal date yet? I had a medical appeal in 1999 and won so keep at it, us sufferers will beat the scroungers eventually. Why should we suffer because of the scroungers that DON'T want to work not CAN'T!

hi pam i had a medical beginning of the year, it wasnt the nicest experience but the doc i saw was a nice woman.i was very honest ,and i told her how much i suffer,at the time no use at all of left hand ,left leg in real pain,but at the same time didnt play my condition down,you are watched the minute you arrive until the minute you leave.fact.about 6 weeks later was put in the work group,i went to see my advisor a few months later who told me they had no medical experience and just there to help, seen i was a wreck and said dont come back for 12 months,,,result.the problem is all the weedlers with nothing wrong with them, make it look bad for the people with real need to focus on the amount of care needed in your interview, and not play down your symptoms,half an hour of feeling maybe embarassed is not nearly as bad as waiting 12 mths on reduced money for your appeal .good luck

Thanks mark, you are not the first person to advise me to tell them exactly how it is, I thought of saying "it depends on how my disease is" but apparently this is the wrong answer, I am to tell them about it like it is my worst day ever..... And this is exactly what I am going to do!! My disease as well as all the CMTrs is a degenerative neurological disease and that is listed under the exemptions and it won my appeal back in 1999, fingers crossed (if you can) for the 2012 result. Fight hard, be strong and be yourself.


I have CMT and am new to these board and am rather shocked that people are still talking in terms of 'scroungers' and 'weedlers' and us and those others who give us a bad name. I see the plan to divide and rule (the oldest plan in the book) is going well. You sound like ATOS being judge and jury, deciding who can be considered disabled and worthy. As far as ATOS are concerned we are all fakers and sturdy beggars, and the natural extension of the governments attitude towards the disabled is the reintroduction of the workhouse. I have to say you should really decide who your enemy is - the small percentage who can't be bothered to work with in a alienating capitalist system in a pointless dead end job and do a little benefits scam - or those in power and their lackeys who seek undermine our sense of self, to breech our human rights (the UN have already given the government a warning about benefit cuts) and make Britain a less free country...

Thanks for replying, a bit intense I think,but we are all entitled to our opinions, Yes the powers that be are mainly to blame but its because of the people who carry on trying to commit fraud within the system. We CMTers are all disabled, some more than others and when it comes to the crunch I predict more genuine disabled people who CANNOT work will have been placed into the work category than those who "play" at being disabled!

Yes I am worried about the medical because the majority of the medical profession are not aware of the disabilities we have; only our neurologists understand how debilitating CMT/HNPP can be, I know min has deteriorated 10 fold since diagnosis in 1999.

Welcome to the board pappysean!!!! Regards Pam Walmsley.

pappysean profile image
pappysean in reply to Pam49

Thank you for your reply Pam, I think this is an intense situation we find ourselves in, it is certainly intense for me and write 'its because of the people who carry on trying to commit fraud within the system', no, with all due respect that's a very naive assessment of the situation - they say its because of the people who carry on trying to commit fraud with in the system...which, anyway, is a very small percentage of claimants...but that's merely a foil, an excuse. They find the amount paid out in benefits to the disabled unsustainable (I'm paraphrasing from a Tory minister, her name escapes me) which means they find the disabled unsustainable. ATOS have targets to meet...they have numbers to get off of benefits...they are paid to so...ATOS medical staff are encouraged to do so, they have a quota. We should all be worried...

I'm sorry your condition has deteriorated, mine has also in the last ten years since my diagnosis. That I'm able to deal with the needs of our three year old daughter will be enough to put me in the work category in the eyes of ATOS, seriously. It looks like my partner's medical will come up before mine, she will also no doubt be deemed capable of work and while we both appeal, reduced benefits, we will quite probably not be able to meet the rent. It's predicted that 1 in 10 disabled families will be made homeless...sorry, this is still quite intense...

I'll end with an interesting irony from history - Siemens do the IT for the 1930s Siemens provided the electrical components for the gas chambers in Auschwitz...can you see the comparison I'm trying to make...what goes around comes around...

best regards, Sean

this is 'interesting' ;

Hi Sean

Thanks for your reply and I agree with you entirely, the last sentence about siemens is frightening really, but they do say history repeats itself! I too will be up the swanee if my benefit gets cut or stopped as the money helps pay the household bills and helps with other bits within the household, I don't think we will be able to stay afloat if I lost it!! It4's really worrying and I read the article from the link you posted and it is so disheartening to read just what us disabled are going through, I have to face the Atos idiots on Tuesday at 10.30 and I am really really worried.

Regards Pam.

...I'm really sorry, I hope you're not facing them alone...I guess you've seen the check lists that people are posting: of my nieces (almost my whole extended family have CMT) who has scoliosis (as I do) and has been in a wheelchair for eighteen months year now (she is 29)...had her assesment and was declared fit for work...but later won her appeal. I think this is what most of us can some parts of the country 80% of appeals are successful...I'd say best of luck...but it isn't about luck is it. all I can say is take care Pam...

best wishes, Sean

Hi Sean, found a Job Centre booklet that states exemptions from this medical and we all fall into one or two of the categories! Page 14 , 15 & 16 are particularly useful to anybody going for there medical or fighting there case. I have enclosed the web link to the booklet below.

...that's very we're - you're exempt from the medical - but you've got your assessment tomorrow? so, how does it work from there?

ah okay - I found this on the ESA exemptions, I would've been in at least two catagories under the old order...but this new list is very limited, and we're not in it:

Certain people are treated a having limited capability for work, meaning that they do not have to satisfy the test.

A claimant will be treated as having limited capability for work, and therefore be exempt from the assessment of limited capability for work, if he/she:

•is terminally ill.

•is receiving, or recovering from, intravenous, intraperitoneal or intrathecal chemotherapy.

•is excluded from work due to having been in contact with a notifiable disease.

•is a hospital in-patient.

•is pregnant and either: •entitled to Maternity Allowance,

•in the period between the date six weeks before her due date and two weeks after the actual birth, and she is not entitled to Maternity Allowance or Statutory Maternity Pay for that period, or,

•there is a serious risk to her or the unborn child if she does not refrain from work,

•is receiving one of the following treatments: •haemodialysis for chronic renal failure,

•plasmapheresis or radiotherapy,

•total parenteral nutrition for gross impairment of enteric function.

this is the system of the beast from the book of revelations if I'm not partner and I were talking about the possibility for a class action against the DWP...

best wishes, Sean

how are you Pam?

Hi Sean I had my medical and I am so pleased that I saw a GP who WAS not part of the Atos team! She knew my Neurologist and she actually read ALL the info I sent in before she called me in. She reckoned they sent for me as they had not seen me in a while and then she asked me a few questions and then told me she will ring LEEDS DWP whilst I was there and get them off my back for years rather than months. My dad and I waited until she came back and she even told us the name of the person she spoke to and that they themselves suffered from some kind of illness that makes shower water feel like pins hitting their skin, she did say what it was but I didn't take it in as I was shocked the way things went. (Surprised too!). She has been practising for 20 years and never come across our disease, so really that says it all regarding the common GP. So all in all I will receive a letter from the DWP within 3 weeks saying that I AM EXEMPT!! Result!!

So my advice to anyone else who has to attend one of these medicals is to request to see a GP and not the ATOS idiots.

The exemption she has put through she said is that I can't walk up to 50 meters repeatedly and reliably.

Regards and good luck to all my fellow CMTers who have to attend a medical. Pam

williamalfred profile image
williamalfred in reply to Pam49

HI Pam glad you`ve got sorted i`m still waiting to hear about my appeal from last year apparently they`re very busy,so i`m going to give them a ring tomorrow and see what`s going`s typical.

...that is such good news (for you and for us, and everyone here) partner and I had been very worried for you over the last three days. but, at the risk of sounding thick, how was it you got to see a doctor who was not part of the ATOS team?

best wishes, Sean

I think Sean it was because I sent all the info I had and letters from neurologists and the fact that the DWP requested it that I see a doctor. Basically the DWP did not understand our disease to be honest.

...thank you Pam, that's interesting. I wonder - does that mean that everyone with CMT will be seen by an NHS doctor? - does it mean that CMT will be on the exemption catagory now? it should of course mean both...I understand if you don't want to, but could you give me the name of the doctor who did your assessment it might be useful for everyone here? I'm glad your worry is over...

best wishes, Sean

Hi Sean

you know I cant remember her name now, all I can remember is that she knows my neurologist, to be honest I think I was in shock of how relaxed it all was and that she had made her decision before she called me in! She did say the exemptions have changed but she said she had exempt me as (Cannot walk up to 50m repeatedly and reliably) whatever that means, LOL! Any way I just know that for me personally it was better that I saw the GP, It may not be for everyone and it may depend on what info others send in with their forms as I sent everything I could that would make them understand the difficulties I have in day to day life. Others will be the same as me, some will be worse, some will be better than me, but at my medical it paid off for me to see a GP. Each individual is different so regarding all us CMTers I don't think we will be listed under our own exemption. Whatever our disease does to you as an individual will depend on how an assessor sees you. For me personally my hands and legs being numb stop me doing soooo much day to day. I do hope others will benefit from my experience with this medical. I was vigilant regarding the cameras everywhere, I din't speak to my dad when she left the room and basically I just told her how it is for me on a day to day basis. So like I said because of the way my interview went I would ask anyone to request to see a doctor when and if you get the call!(The dreaded call)

Regards Pam

...thank you understanding is that ATOS medical professionals are compromised, ethically and professionally by working for its always going to be better seeing an outside GP...anyways, thanks I'll tell my partner to get to see a consultant quickly, it'll be interesting to see how that goes down as far as her disability is concerned (it hasn't got a proper name) she is the only person with her condition in the UK...I'm also going to try and work out what "cannot walk up to 50m repeatedly and reliably" means...

best wishes, Sean

I have to say, I am getting the impression that people are missing the point, that is......Atos, DWP and more importantly our government have an agenda which is to save money, we are part of this agenda, so remember we are not seen as an individual who has a disability and pain and consequential difficulties, we are just people that need to be shoved into a different category and as that category is one that will make us work in crappy jobs that cause us pain, distress, misery and push us in to poverty if we don't join together and fight this government that in my opinion are currently committing human rights atrocities.

We are starting a blog about our common cause and will be collating information on as many individuals WCA's as possible in order to prove that this whole affair is unjust. Just so you all know the UN has allegedly warned the government that if this process continues as is, then our human rights rating will be reduced from an A to a B, which will be in line with countries such as the Congo and Kazakstan!

We will update this post when our blog is ready to receive people's stories, please join us and lets try and make some big changes to lives that our being wrecked on a daily basis.

"Then they came for us" ...........................

still waiting to hear about my appeal they lost my case notes would you believe it`s a disgrace.

I had my assessment this year. Filled out the wretched 50 pages. Had my nursing friend help me, she also added some things too, which i hadnt tbought of , like difficulty in cutting up veg and the risk of cutting my fingers as i have reduced painful stimuli .

Also my fear of travelling on public services with my rollator.

You get a close friend or relative to help fill it up. Someone who knows your limitations. It helped me not only got more personal care that i got on DLA but kept my enhanced mobility rate.

thanks for the really helpful info above, I haven't had a date for a reassessment or whatever its called but no doubt I will in time. Pappysean I so agree about this gov't, they are cruel. I think they read daily mail headlines/tv programmes about benefit cheats & thought they'd go for those votes since few support their ideology, unless they're already rich. Its just the same as they chased the UKIP votes. There are some great campaign groups around thank goodness.

Hi I had my assessment at the end of Dec. And 3 wks later had the call and was told I had zero points because the questions are ridiculous and we're not about me and how I'm effected by this disease. I did even write down pages of my problems but didn't get the chance to vent them but waa able to put them in with my report. However I believe they weren't looked at at all. I told my gp who looked surprised and slightly shocked obviously thought it was not correct. Tbh I think Steven Hawkins would struggle to get 15 points which is the required amount needed. I will fight this decision once again! And my gp thinks I'm right to do so. I've had three gp's a neurologist and the court (previously) say I should not be made to work yet still they are trying to force me back to work, which I would do if I could seriously! So all I can say is yes u may have ur "esa" stopped but if so u need to fight fight fight as to me this surely is against our human rights. As they are not acknowledging our disease.

Just to add bcos I can still clean my teeth wash and don't yet soil myself and could move from one chair to the next and stand for 30sec. And do some walking which is advised by professionals! ? Due to bad circulation they say use it or lose it but it's more like reserve it to preserve it. However this to me does not constitute the ability to go out and work. We never know what time we are able to get up or how we are gong to feel every day when we do, and the cold weather is damaging to our disease I hate going out in the cold. They seem to think it just effects our feet legs arms but this is incorrect it effects the head back and our central nervous system it's a neurological disease (motor neurone) if they actually look up neuropathy they would have a better understanding of what we have to deal with every day. I would say that from the moment u arrive and everything you do at the centre they are taking notes, from the chair u sit in how long u stand and sit but we all have to either sit or stand what other option do we have?? My advice is do not feel rushed try to give add much info about your problems add u can all they made me do was to push up/down against the assessors hand move my foot up/down and bend/squat which I had trouble with and even said im leaning forward due to back pain but none of this seemed to be taken into account which is why I will fight the decision. I wish you all the luck you will need it. Its a very unjust and unfair system still. I was even having trouble with shaking add I have a body tremor yet they said in the report that I had no difficulty writing or turning pages which was untrue and no trouble with my balance which is also untrue add this is one of the big issues with cmt so I believe nobody looked at my added notes in my report and they try to fob u off hoping u will not fight the decision this is why we all need to. So do ur research get the evidence and be ready to fight ur case in court if need be. That's me for now hope this is useful to u all. #cmtrs

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