Hi, my name is kimmy64! — Scope | Disability forum
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Hi, my name is kimmy64!

My daughter suffered an AVM bleed when she was 16yrs old. She is now almost 25 and despite trying really hard at everything does struggle massively with tiredness and mental health problems. I believe this is neuro fatigue as a result of the brain haemorrhage which also caused a left haeminopia. It’s exhausting for her and everyone concerned. She desperately wants to achieve and get a full time meaningful job but at the same time can’t physically or mentally cope with the hours and has never really been able to work more than 3 full days a week which takes its toll in the end. She doesn’t want to receive benefits but I can’t see a way out for her, also she does not actually meet any criteria for benefits would you believe as it seems she has to practically say She can’t tie her shoe laces or walk 100 yards unaided! I have explored all the avenues of claiming some  financial support to no avail and wondered if anyone had a similar situation or could offer any advice? 


  • poppy123456
    poppy123456 Member Posts: 28,497 Disability Gamechanger
    Hi and welcome,

    I'm one of the community champions here on scope and i'm here to help and advise others.

    Claiming a means tested benefit will depend on a person circumstances such as living with partner that works, renting their own home or living with parents and savings capital. The only means tested benefit that she could claim now is Universal Credit. Whether she would be entitled to this will depend on how much she earns and how many hours per week she works. If she works more than 16 hours per week then she won't be able to claim for limited capability for work unless she has a PIP award. Claiming limited capability for work if she works less than 16 hours per week, she will need a fit note from her GP but it's not awarded based on a diagnosis, it's how those conditions affect your ability to do any type of work.

    My advice for this is to speak to an advice centre near her.

    There's also PIP, which again isn't awarded based on a diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors. Evidence will be needed to support her claim and this should state how her conditions affect her against the PIP descriptors. A face to face assessment is most likely because most people have them.

    Lots of people claim benefits for invisible conditions and you don't need to be bed ridden to claim a disability benefit. It just depends how those conditions affect you. You can have a disability but not be entitled to a disability benefit because if you don't fit the descriptors you won't score the points for an award.

    May i ask what if any benefits she's claimed and how many hours per week she works?

  • kimmy64
    kimmy64 Member Posts: 2 Listener
    Rebeca works 6 at the moment and says she could manage 25 if over no more than 3 days she had tried this before,  and I know that this means she cannot claim any benefits. She tried to claim PIP but as based mainly on daily living she did not score on this and was declined. Basically she does not fit the descriptors as you said, but I think it is so unfair that this fatigue prevents her from pursuing full time work but also means she can’t afford to live independently. She had tested out Universal Credit too which came back as 0. Thank you for getting back to me.
  • poppy123456
    poppy123456 Member Posts: 28,497 Disability Gamechanger
    If she works 25 hours then she won't be entitled to UC because her income will reduce her entitlement to zero. If she continues to work just 6 hours then she will be entitled to claim a small amount of UC. If she lives on her own and rents her home then UC will include a housing element for help with the rent. If she lives with you then of course she can't claim for help with rent. If she works 6 hours then to claim limited capability work with UC then a fit note will be needed from her GP.

    You say she tried to claim PIP, did she request the MR and Tribunal when she was refused? If she didn't, was there any reason why? Having some understanding of the PIP descriptors always helps and for this reason i'd advise you to have a look at this link. https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria


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