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Problems accessing care maybe sorted

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  • TinyLady
    replied
    PeterPan - thanks. May be I don't qualify yet? I keep thinking perhaps I'm not unwell enough yet. I'm in a powerchair, little use of left arm, poor speech and modified diet.

    I am just so desperate for help so my husband can return to work and the pressure is off my teenage children, plus I get quality of life back - not just sat in a chair remembering all my hobbies 🤣

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  • PeterPan
    replied
    People with MND do qualify for continuing healthcare. My palliative care nurse says I qualify now. We’re just getting ready to start care.
    There are certain criteria to meet (none of which are social). Basically my situation is that I’m nil by mouth, can’t speak and can’t use my arms so need assistance for just about everything. Typing is achieved using one thumb on phone, and eye gaze.
    Press for what you’re entitled to!

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  • TinyLady
    started a topic Problems accessing care maybe sorted

    Problems accessing care maybe sorted

    I have been struggling so much with day to day things and despite social services awarding me 35 hours care when I was in the hospice mid February, to date not a single hour has been provided.

    After much chasing and stress and meetings it turns out the amount per hour social services offered to pay was at least £10 short of the care agencies, so no one wanted to help me. Once I found this out I was somewhat angry that social services knew this and have left me struggling. I can't even agree to a PEG procedure with no carers.

    Then I found out when my DS1500 was signed in early December, or when I was in the hospice, or when I was assesed for care.... apparently CHC funding should have been applied for? Which would have covered the additional costs. It seems everyone assumed someone else had done this.

    So I was visited Friday for a fast track assessment. Very quick. She asked very little and told me she knew nothing about MND and what was it 😬

    Since then someone I know who works for NHS has told me I won't get it anyway as my needs are all social not medical? I feel the rug is being pulled away again... should I qualify for CHC funding? I am beyond desperate for care and to finally get some trust back in this system!!
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