Cystic Adventitial disease is rare - will they take this into account?
Aliciabell
Online Community Member Posts: 3 Listener
Hello, I have a condition called Cystic Adventitial disease. very rare with only 8 cases in UK. I have had invasive surgery and the consultants have admitted it has failed for the second time and suggested I apply for PIP as I'm never going to get better only worse. my daily living according to the claim form is not worth any points and although I am limited I my walking to about 20 metres on a good day, I cant see myself getting awarded anything. Do they take into account that a condition is rare and not a lot of information about it is available - took nearly a year to be diagnosed.
does everyone have a f2f assessment, wondering how long I will have to wait to find out.
Many thanks
does everyone have a f2f assessment, wondering how long I will have to wait to find out.
Many thanks
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Comments
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Hi @Aliciabell, welcome to the community.
The important question is how is CA affecting you daily? Your daily living needs and mobility is what is taken into account. They will not take into account whether a condition is rare or not - it's how it's affecting you right now.
Yes you do need a f2f assessment. They can come to your home to carry it out.
Consider how you are on a bad day. That's what you need to present to them. If you can walk unaided on any day, are you in pain?
Best wishes with making the most of life moving forward
Although you're looking at the form and it looks like you don't fufill requirements I am sure the consultants would not suggest PIP as an option if not appropriate. Maybe go back to them and ask about it?
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The worst advice is to present your how you are on a bad day. All conditions have bad and worse days as well as some not so bad days. PIP is awarded based on how you are for the majority of time
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Hi @Aliciabell
Welcome to the community
PIP is not awarded on the rarity of the condition but on how it affects day-to-day living. F2F assessments occur on the vast majority of cases. I would advise to use as many examples as possible and provide as much supporting evidence as you can. It is also worth an appointment at Citizens Advice.
Scope also has information on the process you may find of interest.:
Preparing for your PIP assessmentTips for completing your PIP form
Good luck and keep us informed!
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