PIP, DLA and AA
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How can we prepare for appeal?

nannlynnannlyn Member Posts: 3 Listener
edited January 2019 in PIP, DLA and AA
Hello and thanks for the ad. I am supporting my daughter in her pip appeal, we have been to tribunal a couple of years ago and awarded low mobility for 3 yrs however after 2 yrs they decided to stop this so she has had to go through the whole process again. Should have the tribunal date soon so getting prepped for this. I think it will be a harder process this time so looking for ideas of what to take paperwork wise and what best to say. She has a condition called acute cholinergic dysautonomia since age 12, its an auto immune conditions and has also developed diabetes in the last couple of years [another auto immune] and uses insulin injections 5 times a day. Her main condition is extrremely rare and we think this leads to a lack of understanding in the medics. Its not a familial condition but an idiopathic. It affect the flight or fight responses so skin, sweat, eyesight, tears, dry mouth, heart rate, bp, gut motility, tiredness, brain fog, and joint pains seem to be an added bonus. It has similarity to POTS but also huge differences. It affects her on a daily or hourly basis. She lives with her partner and has 2 children [after difficult pregnancies, the last of which induced gestational diabetes which did not go]. She acquired it aged 12 and is now 35. We know of no others in the uk with this - there may be the odd one or two in USA, it really is an orphan illness.
I can print off a list of how it is affected and take that
She can do a daily diary for a month showing how her daily life is
We have little medical stuff to take - which is half the issue - as she did see specialists early on, but as they cant change it, she was a bit of a guinea pig, so doesnt really see anyone apart from occasional GP visits. She takes over counter pain meds as cant take decent meds as it further stuffs up her gut motility and causes immense constipation [ talking a dozen senna tablets here a couple of times a week to shift things without adding any pain meds ]. She did see a neuro recently who has confirmed her condition and added a wee bit of info as PIP wanted her to take more recent medic report - but it doesnt say much apart from refer to her previous notes, which were the ones used in last PIP......
So, if you have had the patience to read this, then thanks, and if you have the info to say how best we prepare for the next tribunal, then please it would be lovely to hear some tips and notes to how i can support her PIP tribunal best. She is capable but gets muddled and tired and confused with it all.
Thanks

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