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Next steps?

SystemSystem Posts: 519

Scope community team

This discussion was created from comments split from: Klippel Trenaunay Weber Syndrome.


  • eviegeorgeeviegeorge Member Posts: 2 Listener
    Hi everyone, looking for a bit of advice really. My partner has Klippel Trenaunay Webber syndrome was diagnosed when he was 6 months old. He’s now 30 and as he has got older he’s struggling more and more he has arthritis in his knee and been in and out of hospital with blood clots over the years. He has always received middle rate care high rate mobility which we have a car! He had to make the transition from dla to pip and has been knocked back told him he will receive nothing from 26th November! The pip assessor lied so much in the assessment she said that he refused a physical examination! When it was her who said she wasn’t going to do one because he seemed in a lot of pain! Does anyone have any advice on what to do next? Thanks
  • gem_mumOF2gem_mumOF2 Member Posts: 7 Listener
    Hi @eviegeorge

    Its so frustrating when the pain of living with kts on a daily basis is dismissed by one person, being the one person that could help us. I never followed my refusal up but I believe your partner can appeal the case. If you read  the comment above by Swav63, sounds like it was a similar situation and in the end he had good results. I hope your partner gets the same results. 
  • eviegeorgeeviegeorge Member Posts: 2 Listener
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,942

    Scope community team

    Hello @eviegeorge.
    Your next steps would be to put in for a Mandatory Reconsideration. We have some information about the process on our website here: https://www.scope.org.uk/advice-and-support/challenging-PIP-or-other-benefits-decisions/

    It might be worth you both seeking face-to-face advice from someone who may be able to help with your appeal. If this sounds of interest to you, pop your postcode into this website and it'll show what's available in your area: https://advicelocal.uk/
    Senior Community Partner

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  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    Not heard of KLT, but I will look it up.

    Hope you will put in for an MR and if that fails, then go to tribunal. A low % of MRs get turned around, but a much higher % of tribunals do.

    I`m waiting for my result, but will fight it if it isn't what I feel I am entitled to.

    Good luck.
  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    Hi again. Just looked up KLT.

    I saw the word hemangioma, which I knew, as my daughter has 4 of these in her liver and I have 1 on my tummy. These collections of veins can be harmless, unless they grow, as you know.

    The weber part looks awful. Has it made one leg bigger than the other?
    Best wishes xx
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