PIP (UK specific) question

I'm currently filling in an application for PIP -- based on restrictive cardiomyopathy and the resultant heart failure and VT/ICD, plus an Essential Tremor. Does anyone have experience of what works?

I'm particularly interested if the ICD makes any difference -- my suspicion is not.

However, I'd like to hear advice from anyone who has gone through the PIP process.


PIP (Personal Independence Payment)

by Gemita - 2022-03-20 19:16:25

Hello Atiras,

Yes I have some experience applying for PIP for my brother who has a rare, inherited, progressive and incurable neurological condition called Episodic Ataxia Type 2 which was passed on to him by his late father.  The disease affects balance, co-ordination, speech and many other functions.  I was closely involved in his care in 2017 when we applied for PIP.  We succeeded but it was a gruelling process.  I will dig out the files tomorrow and send you some tips by private message because of the confidential nature of it all.

I would focus being on the heart transplant list Atiras and on what you cannot do without help?  Be honest about what you can do, but equally don't be too proud to admit that you cannot always carry out activities reliably without assistance.

When you think about the ICD, mention any fear you may have of anticipating a shock and if you have received a shock, explain exactly how it affects you physically and emotionally afterwards.

I will send you more tomorrow.  Take good care


by atiras - 2022-03-20 19:39:29

Thank you Gemita  It is hard to admit what I can't do especially when I've always been the capable one in the family.

I havent yet had a shock so anticipation may be worse than reality but I do worry about having a shock when I'm cooking, or showering in an enclosed space and hitting my head when I'm on blood thinners.


PIP (Personal Independence Payment)

by Gemita - 2022-03-20 19:53:42

Yes it was heart breaking to watch my brother refusing to accept he had a problem for so many years, denying himself the help and care he so needed.  He walked out on me many times when he read what I had put on the PIP form about his disability.  He eventually realised that the only person he was harming was himself for being so proud.  

It is important that when you do apply you have the support of your cardiologist, GP and any other consultant involved in your care and this shouldn’t be hard to obtain.  Support letters will be invaluable in getting you the best level of benefit possible.  Until tomorrow!

Have private messaged you

by Gemita - 2022-03-21 09:57:33

Atiras, I have now sent you an extensive private message/copy of relevant submissions to help you complete your PIP forms.  I wish you lots of luck and if I can help further, please let me know.


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