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ESA 50 6 months 1 week ago #225839

Hello, I’m looking for some advice please, I hope that someone can help me. I am Legal Gardian for my adult daughter who is 38. She has had a very rare genetic skin disease for all her life called Xeroderma Pigmentosum XP. for short. This disease causes serious Uv radiation from the sun to burn her skin. She has no protection against it. It can’t be cured. So she stays in the house. Other that visits to hospital clinics.
XP has caused bone deformormity, (23yrs of Major orthopaedic reconstructive surgery. It causes Skin Cancers which she has had several removed from her face and in her hair. Some of these have had to have plastic surgery grafts afterwards. She had had a cancer of the eye in 2006 this growth was successfully removed , and she was treated with Chemtherapy drops, - but we still have to travel from home in Wales, up to Moorefields Eye Hospitall, twice a year. Further plastic surgery under the eye etc. Followed. All the surgery in her lower legs, ankles and feet have caused her not to be able to walk properly, she cannot balance and falls. The only way for her to walk is my holding onto both sides of the walls in our house. When I take her out she hold onto my arm for support and balance. XP has caused severe deafness , she has a hearing aid in both ears. XP has caused learning difficulties also. It’s difficukt for her to converse with people who do not know her. She is under constant review by her Dermatologist too.
I’m sure I’ve missed things out, as her illness is very complex.
We do not have social workers etc as she did not want them. It’s me, her dad, and her. That’s fine by us.
Please can anyone tell me just how i but this on the small booklet form?
She does not fit in any category as it so very rare. There are less than 50 people in UK with it? Any ideas will be very helpful, or suggestions of organisations for help with filling in the form

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ESA 50 6 months 1 week ago #225841


Welcome to the forum, you might want to have a look at the following FAQ which explains where everything is

Welcome to Benefits and Work

In case you are not aware, your real name appears to be showing in the forum, if you want to change this then follow the instructions in the following FAQ

My full name is showing, how can I stop it?

First of all have a look at our ESA Claim guides on the following link


There are a couple areas that stand out that you should be looking at.

You mention she has suffered multiple cases of cancer involving chemotherapy, would her GP be willing to certify that she is either still receiving chemotherapy or that she is still suffering the effects of it, this gives automatic qualification for the ESA Support Group.

Failing that it sounds as if she would meet the Substantial Risk requirements again for the Support Group.

Both of these are covered in the guides.


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