Charcot-Marie-Tooth UK
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PIP Advice


just looking for some feedback on PIP i have DLA indefinitely but have had the dreaded letter to re claim for PIP and i haven't slept since, i was diagnosed with CMT from birth and approaching 30 i have had numerous surgeries and am already at the point where the specialists dont think they can do much more for me, in total i have had 14 operations on my ankles. each day is a struggle just to get footwear on due to the state and shape of my ankles and i have no feeling in either foot at all

7 Replies

It is hard not to worry...but the key terms with PIP are 'reliably and repeatedly', especially in regards to the mobility component, and I doubt if you'll have any trouble convincing them of that, especially as it is completely in line with a CMT diagnosis (and having a diagnosis for a neurological condition is an advantage when approaching PIP). Just be thorough when approaching the form, and be honest with yourself about what you have difficulty with (ie what you cannot do either 'reliably' or 'repeatedly'...or 'safely' in the broadest sense). The DWP require a lot of repetition (so spell it all out to them, your worst day of course as you probably did with DLA...imagine that they are a bunch of bureaucrat with no medical knowledge). Get proper supporting documents - a good doctors letter which support your many 'reliably and repeatedly' claims - a letter from your consultant, and any other practitioner you many have, and knows you and your CMT well. I understand how you feel, I had mine almost a year ago now, by the second week of this I was wetting the bed, but in the end, I sailed through it...well, sailed through it after I did all my research and spent a week on filling in the form. I also had a face-to-face assessment but one thing at a time. If you feel unable or unequipped get CAB to help, they're very good on PIP. Also:

Best wishes, S.


I agree with you about Citizens Advice.They filled in my form and made sure that if there was a face to face assessment I would require a home visit.i was sick to my stomach waiting for it then waiting for a decision when that dreaded brown envelope arrived I didn't open it for two days but thankfully I got itbut will have to have a review in 2019


hi there i have recently transferred from DLA to PIP and make sure you send in as much documentary evidence as you can get with your claim. I got my records from my gp going back over the last 5 years together with a lot of my consultants reports and hospital appointments physio etc which i believe helped me tremendously in my claim. I had a really good healthcare professional who came out to visit me as she had heard of CMT for a change. Good luck with your changeover.


many thanks for your help it has put my mind a little at ease


glad I could help just stay positive and fingers crossed for you


finally heard back on my pip claim and it is not good news they have deemed that although i have a progressive disability they now think i do not need qualify for the same level i was getting on DLA, i dont know what i am going to do! they comment that i have extensive evidence to support my claim but will cut what i was getting ( which i have been getting for 20 years )


I'm sorry about that make sure you appeal and go to your local Citizens Advice with all your paperwork they will help you with the process they have helped many people overturn the DWP decision good luck


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