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Xeroderma Pigmentosum UK

XP and Disability Living Allowance


We are a family in West Yorkshire. My son has XP. He is now 14. We used to receive Disability Living Allowance DLA but it has now been revoked. I have read all the comments on this group and have applied them within my Mandatory Reconsideration Notice letter to the DLA office. I used words unable to walk SAFELY and RELIABLY but unfortunately they still have decided to not allow DLA.

In a nutshell they have said that now he is 14 he is capable of looking after himself.

My take on this is that they simply are not prepared to listen to any appeal. It is simply about cost saving for this current government. They clearly know what XP is and its dangers especially with all the documents and information I have provided.

Meanwhile the government can continue without challenge to take more tax out of people and chose not to distribute it to where it is needed. Champagne anyone ?

The illness had not changed but the government has. So why previously was it a YES and XP was seen as a danger but now it is a NO ?

Can anyone give me any advice . Should I pursue it to the courts or are they right to say that now he is 14 years old he can look after himself ?

Has anyone else been through this ?

Help please.




4 Replies


Hope someone replies who may have more experience to help with your situation . As I understand the way it works you have to prove the person needs more help/care than anyone else of the same age.

Along time ago that is exactly what I was advised to do re DLA--look at what you have to do for your son in compassion to a friend or relative of the same age. Hopefully that will give you the answer whether he is or isn't able to care for the management of his XP independantly.

Good luck Cathy


Hi Cathy.

Thank you. I have provided pages of information plus copies of regular hospital appointments all to show the seriousness of XP. It is a very difficult struggle convincing DLA. They simply have no understanding


HI Mohammed

Sorry for the late reply to your post.

I suspect your post is entirely accurate. The DWP do not really care !. Furthermore. they do not really understand or know how to categorise XP into the framework and criteria that they have been given by the governing law. So they pass the buck This is what my legal advisor advised me. so I applied and they refused, they re-considered and refused their casework supervisor reviewed and refused again ! . I appealed again and the case went to hmrc - independent tribunal where I was awarded enhanced rate mobility on the basis of my XP and mobility restrictions.

Incidentally I have Xp C-

XP has not changed - it is the governing law that has changed . In my case I was applying for PIP - fresh new application and because DWP did not really know how to categorise XP within their criteria they dismissed it completely.

They pass the buck in the hope that you get fed up and give up and do nothing. Win win situation for them !

The relevant law in my cases was the The Welfare Reform Act 2012 in relation to PIP- Personal Independence Payment.

I am not sure of which law relates to DLA but I do know that when your child is 16 they will be asked to complete a new application for Personal Independence Payment instead of the DLA that they currently / or were previously getting.

Feel free to email me directly if you need any advise. emmzzinlondon@gmail.com


Mohamed in London

1 like

Hi i have xp type f do you think i will be entitled to disability ?