Personal Independence Payments - Charcot-Marie-Too...

Charcot-Marie-Tooth UK

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Personal Independence Payments

Chelsea1504 profile image
21 Replies

On the 5th March the PIP form (1st ever) for my husband was duly completed and submitted having spent ages looking at it hoping it would fill itself in! On the 10th of March the reply 'your form has been referred to Atos and you may require a face to face assessment, most people do, we will be in touch' was received. On Saturday 21st March the letter 'I have decided you are entitled to high rate care and standard rate mobility until March 2019' arrived 23rd March payment from 5th Feb to 16th March was received! Keep thinking I'll wake up and it's all been a dream after all the unfortunate stories I've heard! Don't give up is all I can say.

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Chelsea1504 profile image
Chelsea1504
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21 Replies
Megan23 profile image
Megan23

That's great news a weight lifted off ur mind so please for you I put a claim in on 11th December last year sent the form off recieved a letter saying atos are dealing with it not heard a thing from them I never sent any medical letters in with it has I never had out in writing at the time so it's just a waiting game for me now to see if I have to go have a medical with them see what happens x

Chelsea1504 profile image
Chelsea1504 in reply to Megan23

I think you should chase them. The only letter I put in was a copy of one my hubby's GP gave him for his employer as he reduced his work to four days a week and the GP agreed it would be sensible x

Megan23 profile image
Megan23 in reply to Chelsea1504

Will do Chelsea 1504 my friend also said that also yesterday only letters I have is one with probably on and then another concerning Charcot Marie tooth on.i don't work anymore I said about going back to work but the jobs I use to do I cannot do them anymore my consultant and Physio have told me I cant it was nice of ur husbands employers to drop his days x

bev5985 profile image
bev5985 in reply to Megan23

Megan if you have some documentary evidence now I would submit this to them to add to the papers you have already sent and yeh I would chase them to see what is happening

Megan23 profile image
Megan23 in reply to bev5985

Thanks bev5985

I will do I'll get them copied this week and I'll get in touch with them.atos are dealing with mine

bev5985 profile image
bev5985 in reply to Megan23

Good luck love

gunner profile image
gunner in reply to bev5985

Yeah send them anything and everything you have it all helps build up your case if u have Gp notes you can ask for them and keep any appointment letters also. They will have a large amount if claims to get through so u may have to wait a while

PhilC profile image
PhilC

Thankfully, ATOS has lost the contract to assess claimants so perhaps justice will prevail now the frogs are no longer in charge - yes you can thank Labour for appointing them

Chelsea1504 profile image
Chelsea1504 in reply to PhilC

Is that recent then as I say our letter dated 10/3 says its with them for assessment?

PhilC profile image
PhilC in reply to Chelsea1504

Yes it was in the Telegraph about a week ago, there have been so many complaints they have given up the contract. See this link to the BBC

bbc.co.uk/news/uk-26766345

Another c*ckup by Labour, ATOS and the Circle Healthcare take over of Hinchingbrook Hospital

bev5985 profile image
bev5985 in reply to PhilC

they are not doing claims for ESA any more but I believe they are still doing PIP assessments

gunner profile image
gunner in reply to PhilC

So glad to hear that thanks as they were useless :)

bev5985 profile image
bev5985

well done at long last it seems that ATOS and DWP have accepted that CMT is a long term health condition

DaisyDuke007 profile image
DaisyDuke007

Hi, I am new to this group. I'm not sure if I'm really entitled to post on here as I dont have a firm dianosis yet, just a strong suspicion from my consultant. I am being tested in London this September. I have my assessment on Thursday and I am so worried about it. Partly because I need support desperately to help me to actually get to work and I don't know what I will do if I get turned down for motability, and partly because I have such trouble putting into words something I am a long way from being ready to accept about myself, and have such trouble making sense of a lot of the time.

I am being seen by ATOS which sounds like bad news. I am only being seen because I rang them to see where my claim was at - I sent it in November. When then woman from ATOS realised how long I'd been waiting, an appointment miraculously appeared. Any advice would be very gratefully recieved.

I'm glad your husband has the support he needs and hope that it makes life brighter for you both.

Chelsea1504 profile image
Chelsea1504 in reply to DaisyDuke007

Sorry Daisyduke I completely missed this. Think I'm too late to offer advice. I hope your assessment was successful x

shrek10001 profile image
shrek10001

My daughter got unofficial turned down at PIP assessment yesterday. The nurse off the record said we may need more medical evidence.

My daughter suffers for hereditary motor and sensory neuropathy (CMT). She walks with two crutches and cant walk far and is very slow at walking. She is unable to stand long and also has a issue with her spine. She has two metal things in her legs which screwed to her bones. I took her myself in a wheelchair. She currently gets high rate mobility and low rate care. I was told I cant not speak even though she forgot to mention she suffers from cold although did say she has poor circulation.

Chelsea1504 profile image
Chelsea1504 in reply to shrek10001

I'm not qualified to say but it seems bizarre to me. Their own paperwork says you can have someone with you to represent your case! I would appeal as soon as possible. Good luck x

DaisyDuke007 profile image
DaisyDuke007

The lady I saw was lovely and my boss came with me (I currently work three days a week). What totally threw me was the fact that the computer system was down so she could not access all the medical evidence that the DWP had emailed. I am desperately hoping for help regarding mobility as I love my job but am finding it almost impossible to get there. Just a waiting game now I guess. I had to say to her that I genuinely don't know how people with mental health problems cope with this process. Generally, I am pretty upbeat but this has been a really really difficult experience, and that's aside from all the fears I have about my condition!

bev5985 profile image
bev5985

well done

gunner profile image
gunner

Glad to hear it, happy for you but r u able to get mobility vehicle with std rate mob? Not sure but I do know how u feel I've certainly had my fair share of atos 😡🔫 I am currently on the "wrag" started b4 Xmas but not been back since ?? But I'm there for 2yrs who knows what condition ill be in by then? But glad things went well for you.

DaisyDuke007 profile image
DaisyDuke007

I've been awarded the mobility at the standard rate. Although this means I can't access the motability scheme, I think that, for my head, its a good outcome. More than anything else I needed to know I was taken seriously and believed. Which I obviously was. I'm kind of OK with the judgement s they have made. I have had to buy a cheap automatic car and will be putting the PIP towards the repayments. But also at the same time, because of the judgement they have made, I feel OK with my recent decision to join a gym. I figured that if I am going to lose muscle, I might as well build those suckers up a bit while I've still got the nerves to do it! (When I've got the energy that is). But I think I would have felt awkward about doing that had they decided I needed more financial support. They are checking in with me in a years time and my official reassessment will be in two years from now. The relief of having finished with it all for now is enormous!!

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