Help needed with Universal Credit for a person with learning disabilities

In my role co-ordinating the Choice Forum I have received the following email from a Choice From Member, whose identity and that of her sister I’ve anonymised. I’m hoping that someone can help them with some suggestions. Thanks Neil.

"Hi, I am hoping you can help point me the right direction with getting my sister who is now nearly 40 formally assessed. Recently we were ask to attend DWP office for my sister to be assessed for her Universal credits, we received a phone call yesterday telling us that the doctor who had assessed her has said she is no longer entitled to her payments and could work!!!

This just isn’t right, she has had learning difficulties since birth and would not cope working/living on her own as she has to be supervised in all she does from dressing to washing to crossing the road. My mother and myself look after her on a day to day basis with the help of my extended family. She could not be left home alone.

The doctor that saw here was very unpleasant from the off and did not want to listen to anything that was said to her even down to the point of myself asking the doctor to explain in very simple (child like terms) to my sister what she was asking.

The doctor first asked my sister to lye on the bed and asked her to move her arms and legs which she has no problem with sat down but is very clumsy and does not have very good coordination. She then ask her a handful of questions-

  1. she gave her three thing to remember and then my sister had to tell her at the end of the conversation what they were (she remembered one).
  2. she asked her to spell WORLD backwards (she could not spell world forwards let along backwards) she couldn’t answer.
  3. she asked who the prime minister was, my sister didn’t know.
  4. she asked her several questions about her every day life which she struggled to answer but had a little help from my mother which the doctor did not like but my sister struggles in social environments with people she doesn’t know.

It seems the doctor has not told the truth on her report and said my sister has answered all the questions above when she didn’t.

It is awful to say and I feel extremely heavy hearted saying it but my sister cannot do anything without assistance and really does struggle.

She was assessed for PIP going back roughly two years ago where she was assessed by a nurse that dealt with people with learning difficulties, she was then awarded the higher payment of PIP. We have told universal credits this information but they have said it is a totally different thing, which I find extremely strange.

Sorry for the long explanation but this has come as a little bit of a shock, My sister, as I have said has had her disabilities since birth and will always have them and in fact most of her problems have/ are getting slight worse as she gets older.

My mother is her long term carer but has never claimed for this as she feels it is her responsibility (as I can imagine a lot of parents do) so I help as much as I can but we really need to get this resolved and I am hoping you could help point me in the right direction of an independent assessor that could asses my sister and write a report for us to send to Universal Credits. I don’t mind paying for this but we need to resolve the issue as soon as possible.

We have already spoken to our doctor also, who we have to make an appointment with to show them the paper work from universal credits."

Hi Neil, thank you for sharing this.

I would advise the Choice Forum Member to contact Sibs

Sibs is the UK charity for brothers and sisters of disabled children and adults. They offer a phone and email support and information service, and will be able to help with this issue.

Best wishes

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I do feel a referral to an advocate will also help as they can represent the sister, and if mum needs an advocate she can have one also.

Welfare right maybe a route to take also for advice and guidance and even support with an appeal to this decision.


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I would strongly advise going to Citizens Advice. They are dealing with lots and lots of Universal Credit queries. They are completely independent and will be able to advise about how to appeal; often they can also support you to go through the appeal process.

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I think the idea of universal credit is to put vulnerable people with learning disability out of pocket. it is so unfair and the whole system is daunting. It’s difficult enough to assist someone to fill the form on line and then has to go through the assessment. People need to understand that having a learning disability means someone treating you with dignity and respect as it is not a contagious diseases.