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Problems accessing care maybe sorted

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    Originally posted by TinyLady View Post
    I'm really not sure where the "poorly enough" line is
    That's the thing, it is not about 'feeling' poorly, it is about getting help to stay well and not get poorly - think of it as the state having a duty of care to keep you well, because you have an illness preventing you from doing just that.

    Can't wait to hear if you'll have the ghost of Cilla Black saying 'Surprise Surprise' with a carer lurking behind her tomorrow morning 😂😂
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


      My husband was turned down for CHC funding, even though he is unable to stand, has no use in his arms, no speech, and is reliant on his PEG for nutrition and administration of medication. Following the assessment, despite having one high score and several moderate ones, the decision was that his condition was not unpredictable, complex or intense!

      We had a great deal of support and advice from a social worker from our local hospice, where he had attended day care. She encouraged us to appeal, and this time we were successful.

      The following things helped in our case. I wrote a detailed letter of appeal, explaining why I disagreed with points in the refusal letter. We asked various health professionals for reports/letters of support. The fact that so many people are involved helps to show how complex the condition is. As I was having to provide so much care, the social worker suggested I wrote down everything that I have to do in the course of a day. This clearly showed that I was providing a lot of health care. And most importantly, without exaggerating any issues, I described how things were on a bad day. This demonstrates the intensity of the condition.

      It is totally unfair that people struggling with this cruel disease should find it so difficult to get CHC funding.


        Polly very helpful and informative post, thanks for sharing.
        Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.