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Chiari Malformation PIP fail

AsiyaAsiya 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. 


  • mikehughescqmikehughescq Member Posts: 7,085 Disability Gamechanger
    Getting advice is always a good idea so start with https://advicelocal.uk/.

    The best approach to getting PIP is to put aside your specific condition, because most people feel the DWP or healthcare professional don’t understand their condition whereas in fact DWP don’t need to know, and then forget your symptoms. 

    What you need to focus on is the consequences of the symptoms and link those to the specific points scoring activities. Use https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system as a starting point. You will need two detailed recent examples of real world incidents of what happened when you attempted a points scoring activity. That’s two examples per activity. As much detail as you can muster i.e. what happened; when; where; why; with whom; what happened next and so on. All of this ought to be what you did on your claim pack but can be done at any stage. 

    You next step is mandatory reconsideration. You don’t get the right to appeal until you’ve done an MR. You can write your own letter or use the form at https://www.gov.uk/government/publications/challenge-a-decision-made-by-the-department-for-work-and-pensions-dwp.

  • chiariedschiarieds Community Co-Production Group Posts: 10,090 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. :)
  • deb74deb74 Member Posts: 768 Pioneering
    Hi @Asiya. I went to the citizens advice. They were very helpful and helped me fill in the forms for my pip application.
  • AsiyaAsiya 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. 

  • mikehughescqmikehughescq Member Posts: 7,085 Disability Gamechanger
    The mistake is to focus on the assessment rather than your own evidence. You could lose the will to live reading threads on here from people reporting issues with the HCP but ultimately it’s one opinion and whilst it will largely direct a DM initially it’s far more productive to build your own case.

    I’d also say, hard as it is, put aside what you learnt as a HCP. It was based on DWP guidance rather than the law and much of that guidance was and remains fundamentally incorrect. You will get yourself into a fair old mess if you follow DWP guidance or the relatively limited training as a HCP.

    We did have someone on here who was also a HCP. They persisted in telling people what a HCP would do in situation x and didn’t take kindly to being told their interpretation of the law bore no relationship to the law at all in several instances e.g. around safety or reliability. Ended badly when they became an active HCP again and not only didn’t really tell everybody on here but also denied their was any guidance about their presence on social media as an active HCP. There is of course tonnes of it from DWP, assessment providers and their professional bodies.

    Anyway, I digress. Focus yourself away from what you were trained on and instead start with places like Benefits and Work or like https://pipinfo.net/.

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