Hiya last year my daughter who is 7 was diagnoised with .c.m.t which she inherited from myself.I made a claim for dla last august 2016 and was refused.i took it to a tribunal which also refused my daughters claim.Since then my daughter has to have pain relief at school for the pain and also wear braces at school for support and also at home on an evening,she has trouble walking long distances,and also has to walk at a very slow pace and take stops as she is in agony,she trips and falls constantly bruising her knees legs and hands,she goes to pysio and we also have excercises to do at home.last month I reaplied for dla for my daughter and today got refuse again.Ican not understand why she is getting refused and don’t know who to turn to or to talk to...
Many Thanks
Written by
debbielee
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My daughter initially got middle care at around age 6, but nothing for mobility. She is now 10 and uses a wheelchair quite a bit so now gets mobility. Your issues sound pretty much in line with ours, I have a copy of how we worded it which you could use as a basis, I definitely think you are entitled to something
Hiya sorry it's took so long to reply.. a quick update on where we are... my appeal for tribunal is at the end of April I'm absolutely terrified about it my daughter has now been put on gapapentin to ease off the pain..one in the morning and one at night although it does seem to settle her off to sleep she still wakes in the night on 2 sometimes 3 times for pains in her legs which I message to try and ease the pain for her..It's heartbraking seeing her in so much pain..thankyou for you reply xx
Did you have letters from her specialist? It is very perplexing...but I'd say continue to fight them, demand the reasons for refusal, provide a counter-argument...
Hiya sorry it's took so long to reply... I had a letter from her physio explaining everything she goes through.. I sent pictures of her injuries caused by her falls .. I've got a tribunal date at the end of April which I'm terrified about as I've never been to one before xx
The pip now is impossible to claim as they make the assessments that hard and misleading. Ive been on high dla for 10 years but just been disallowed and they want my car back.its so frustrating im now disabled with no car.its not fair but i think the system makes it that hard then people give up!im appealing and will continue and i hope you do to for your daughter. Good luck
I lost it all.apparently pip dont like awarding anyone with disabilities especially cmt as i believe they dont think its serious enough.!so frustrating but am just appealing and waiting for my tribunal. I wont give up we all shouldnt give on to them
i cant believe you lost all as life isn't easy with cmt .I still work but struggle with balance and awareness obviously. good luck to you .I will research to see if there is someone to help me fill in form so they can understand the stress we go thru.
Still waiting for my appeal for the refusal of pip in June ive rangand they say its still another 16 weeks at least! Do they delay it on purpose as the stress is not helping my cmt 😅
That is brilliant news im so happy for you....I have my appeal for my daughter at the end of this month I'm terrified about it to be honest.. It's took so long for it to get this appeal..I don't have a clue what happens at appeals xx
Ok i can give you some advice so she has cmt i take it,how does it affect her did she get dla before? Pip is awarded on points and you can look online to see how they award you points. Its not a fair system at all and they lie as they are paid ho reduce claims but dont let them bully you!!if she is in pain make sure you tell them and dont just answer yes explain how she struggles. Hope you get the help you deserve. Good luck 😁
I want to thank you all for your comments and for all your help I had my daughter's tribunal today and she was awarded high rate care but not mobility I am absolutely thrilled with the outcome and I'm so glad I fought this for her.i was really nervous today I couldn't sleep a wink last night fretting over it but they made me feel at ease and I told them everything about what my daughter goes through on a day to day basis and they listened to everything never interrupted me or never rushed me..I'm so pleased with out come once again thankyou everyone xxxxx
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ESA medical farce
UPDATE - MY REPLY TO MEMAMBE
Where to start
CMT and multiple other problems