Chiari Malformation PIP fail — Scope | Disability forum
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Chiari Malformation PIP fail

Asiya Member Posts: 2 Listener
Hello I have suffered greatly with Chiari for nearly 3 years and feel like I have not been taken seriously by health professionals and even declined PIP. I suffer with pain severe pain, migraine, numbness and pins and needles in my limbs, blurred vision and dizziness and require a lot of help from family. I used to work as a nurse, but due to this illness I am home as a single parent struggling financially.
Does anyone know of any organisations or support groups that can help with my PIP claim please, as I am lost and considering appealing to a tribunal. 


  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Hi @Asiya - I just wanted to welcome you to the community as I also have Chiari 1 Malformation & know how much it impacts on my life too. Chiari 1 Malformation can be poorly understood, but, as emphasised above, PIP isn't based on any diagnosis, but how this is disabling relating to the descriptors.
    You have received great advice above, which I'm sure you'll find helpful. If you have any questions, there's usually someone here who will try & help/advise. :)
  • deb74
    deb74 Member Posts: 782 Pioneering
    Hi @Asiya. I went to the citizens advice. They were very helpful and helped me fill in the forms for my pip application.
  • Asiya
    Asiya Member Posts: 2 Listener
    Hi all. Thankyou for your kind welcome and helpful responses. This may sound odd but my background is in nursing and I actually used to work as a PIP assessor. So I already know the scoring system and what they are looking for, having worked for the dark side lol #plottwist.

    Its crazy to think that now I’m on the other side and I’m submitting evidence to prove the point system which I know so well and still being refused. I’m now realising how crazy and frustrating this system is even when you submit the legit information! I’ve already had mandatory reconsideration but will now have to go forward to a tribunal. 

    As an assessor I always tried to be fair in considering the evidence. Whereas these people assessing my case are picking at minor signs of wellness in my medical evidence, to counter argue all my overriding disabling issues from consultants and various treatments.

    My GP has also been unhelpful but I will go back again and try and get him to write a specific letter according to the points system. 

    I was mainly trying to seek advice from Chiari organisations who could help my argument, but I will follow the information you all have stated with citizens advice. 



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