Cystic Adventitial disease is rare - will they take this into account? — Scope | Disability forum
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Cystic Adventitial disease is rare - will they take this into account?

Aliciabell Member Posts: 3 Listener
edited March 2019 in PIP, DLA, and AA
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


  • happy91
    happy91 Member Posts: 101 Pioneering
    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?

  • CockneyRebel
    CockneyRebel Member Posts: 5,216 Disability Gamechanger
    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
    Be all you can be, make  every day count. Namaste
  • Adam_Alumni
    Adam_Alumni Scope alumni Posts: 164 Pioneering
    edited March 2019
    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 assessment

    Personal Independence Payment

    Tips for completing your PIP form

    Good luck and keep us informed!


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