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  • denise
    replied
    Well done polly. Have to say I've found the most basic stuff a challenge so hearing that someone has fought back and won something like that is a brilliant result and just shows we shouldn't give in. 😊

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  • Heather R
    replied
    Yes well done, Polly, having the strength to appeal when having to cope with so much x

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  • Mary C
    replied
    Well done Polly.Like you said the complexity of the symptoms and care needs needs consideration.
    Its the same for people with dementia who have an application for CHC they often get turned down.
    Always best to appeal a negative decision.
    Best wishes
    Mary

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  • LindaB
    replied
    Polly well done it's a mine field isn't it....the assessment is flawed as is the process...you've beaten it though!!!!!! πŸ‘βœŠ

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  • Polly
    replied
    We applied for CHC funding earlier this year and were turned down. As with many others, the decision was made on the grounds of intensity, unpredictability and complexity. This was despite the fact that my husband has no speech, has major problems with excessive salvation, cannot stand, has virtually no mobility, a tiny bit of use of one hand, is PEG fed and has quite a complicated medicine regime via the PEG. The assessment was carried out remotely, which didn’t help. And at the time I was coping totally without help with care. With support from several of the health professionals who provide support, I decided to appeal. I wrote a really thorough letter, going through all the domains and giving full details of how they impact on a day to day basis. I enclosed reports from some of the professionals. And I’m delighted to say that we now have funding! I absolutely believe that the assessment is flawed as it looks at the domains separately without comprehending that in combination they are absolutely intense, complex and unpredictable.

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  • Ellie
    replied
    Originally posted by bromleycross View Post
    I have removed the date of doom from my mind and am getting on with life.
    Good on yer, Jane! xx

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  • LindaB
    replied
    bromleycross oh yes they'll whip it back off you if they can...πŸ™„βœŠ

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  • bromleycross
    replied
    Thanks everyone for your words of wisdom re: sell by date or indeed best by date.
    Professionals including the consultant state frequently they β€˜are sorry’ and recently referred to Pallative care team by several professionals all gave me feeling that I was on my last legs .
    What I am learning very quickly is that MND is a law unto itself and mystery to professionals.
    However I have removed the date of doom from my mind and am getting on with life.
    Will my CHC be removed if I live too longπŸ€£πŸ˜‚.,,,?
    Jane xx

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  • Mary C
    replied
    Hi
    like LindaB I too was involved in the CHC process in the hospital I worked in and as she says there are nearly always disputes between NHS, Social Service and the applicant and their families.
    Still worth applying.You can look at the first part of the application on line..known as CHC checklist .Often needs to be backed by evidence from nursing team or health professionals .
    You can always reapply if your health needs change and there is an appeal process too.
    Best wishes
    Mary

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  • denise
    replied
    This is why I don't plan moving. Covid could get us. I could fall down the fire escape with a rubbish bag. There's no one can predict when our socks will pop so I'm staying put. That's my plan. 😊

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  • LindaB
    replied
    Originally posted by Shirl View Post
    Hi folks

    Does anyone know if we MND warriors ever qualify for NHS Continous Health Care at any stage?

    Keep smiling xxx
    For anyone to be awarded fully funded NHS Continuing Healthcare an MDT has to consider the health needs of the person are Intense, Complex, Unpredictable.

    Which seems simple however as an example one of the Domains is Nutrition-Food and Drink.
    You would be assessed as having moderate needs in this domain if you fit this description... 'Unable to take any food and drink by mouth, but all nutritional requirements are being adequately maintained by artificial means, for example via a non problematic PEG.

    To score Severe you'd have to meet this...
    Unable to take food or drink by mouth. All nutritional requirements taken by artificial means require inviting skilled professional intervention or monitoring over a 24hr period to ensure nutrition/hydration, for example I.V fluids/total parental nutrition (TPN)

    Domains are scored no needs, moderate needs, high needs, severe. There are 12 domains. So you can imagine it's a complex process and the conflict raised between health and social care is immense. There are many disputes.

    Fast tracked funding is as you say Doug Carpenter awarded for those of us considered to have less than a certain time to live....I will add that in my experience if I had a pound for every person who was 'fast tracked' and then eventually reviewed because they're alive and Kicking I wouldn't have to apply for PIP.....Id be rich!!! @bromleycross

    So Ellie is right the dates mean nothing in reality....certainly not regarding sell by date....but if it means you've been awarded full funded care grab it....

    Mary C rightly says there's loads of info online and on here.


    ​​

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  • matthew55
    replied
    It's the old how long is a piece of string init! πŸ˜πŸ‘πŸ˜€πŸ˜˜xx

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  • Ellie
    replied
    Originally posted by bromleycross View Post
    ... and have only 5 months left of 10 months predicted.
    Jane, if I've learned one thing about living with ALS, and living in respiratory failure too, it's to ignore whatever expiration date the medics have stamped on your forehead because, in all honesty, they haven't a clue...

    You could be hit by the proverbial bus tomorrow, you could still be going in 2 years time. Unless it's an iminent end of life situation, it's nigh on impossible and rather irresponsible to give a prognosis this far out in ALS. (I've had a few supposed expiration dates stamped on me but someone always gives me a reprieve by buying me from the bargain shelf 🀣🀣🀣)

    Enjoy your life, how you can, when you can. 😘

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  • bromleycross
    replied
    Yes I have CHC funding adult social care organised it with reports from professionals who are working with me and it came quite quickly. Downside to this is that my ALS /respiratory failure seems to be progressing quickly and have only 5 months left of 10 months predicted.
    The cynic in me thinks I only got CHC as it would only be for a short time πŸ˜‰

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  • matthew55
    replied
    I have had CHC for a while for meds and I want more like wash and shave but the wheels run slow. πŸ‘πŸ˜‰πŸ˜€πŸ˜˜xx

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