If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.
Find out how to let us know if you're concerned about another member's safety.
Find out how to let us know if you're concerned about another member's safety.
Cystic Adventitial disease is rare - will they take this into account?
Options
Aliciabell
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
Comments
-
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?
-
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 -
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!
Brightness
Categories
- All Categories
- 13K Start here and say hello!
- 6.6K Coffee lounge
- 103 Games lounge
- 416 Cost of living
- 4.3K Disability rights and campaigning
- 1.9K Research and opportunities
- 199 Community updates
- 9.3K Talk about your situation
- 2.1K Children, parents, and families
- 1.6K Work and employment
- 776 Education
- 1.7K Housing and independent living
- 1.4K Aids, adaptations, and equipment
- 615 Dating, sex, and relationships
- 363 Exercise and accessible facilities
- 737 Transport and travel
- 31.5K Talk about money
- 4.3K Benefits and financial support
- 5.2K Employment and Support Allowance (ESA)
- 17K PIP, DLA, and AA
- 4.9K Universal Credit (UC)
- 6.3K Talk about your impairment
- 1.8K Cerebral palsy
- 867 Chronic pain and pain management
- 180 Physical and neurological impairments
- 1.1K Autism and neurodiversity
- 1.2K Mental health and wellbeing
- 319 Sensory impairments
- 824 Rare, invisible, and undiagnosed conditions
Complete our feedback form and tell us how we can make the community better.
Do you need advice on your energy costs?
Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.