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Thread: Unwanted equipment

  1. #11
    Forum Member Gillette's Avatar
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    Terry, that's a really good point about Riluzole. I'm not sure, but I may have a few at home. When I get discharged home - at the moment it's likely to be Easter 2020 at the earliest, as mine is a Fast-Track CHC application (!) or Christmas 2021 if the application is downgraded to dead snail's pace - I will check if I have a stash and let you know.
    Dina


    Trying to keep positive, but not always managing.

  2. #12
    Forum Member Barry52's Avatar
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    Hi everyone,

    Whilst I don’t wish to bump this thread I would like to comment about riluzole since it was mentioned. We had a talk yesterday at our branch meeting from the deputy director of care for MNDA. Following the talk I asked if the charity is brexit ready. The answer is that they are aware that some drugs including riluzole may be difficult to source (we know this from news reports) as they are manufactured in the EU. Coupled with the manufacturing issues earlier this year it makes perfect sense for any unused and in date riluzole that is no longer required, be made available to current users. This may prove logistically difficult but maybe the care centres can help. I know this goes against advice given regarding sharing medicine but it is a practical solution in the event of a “no deal”.

    Barry
    Last edited by Barry52; 11th October 2019 at 11:53.
    Iím going to do this even if it kills me!

  3. #13
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    Dear Wailywoo hereís another suggestion. Yesterday we had a flyer ďGive Unwanted Items a New HomeĒ. Itís from Scope the disability charity and they will collect for free all sorts of stuff. scope.org.uk/furniture. 0800 0113 005 . Sounds as if you are keeping busy, hope youíre ok.

  4. #14
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Gillette View Post
    When I get discharged home - at the moment it's likely to be Easter 2020 at the earliest...
    I am lost for words, Dina.

    Biggest hug ever.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #15
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Ellie View Post
    I am lost for words, Dina.

    Biggest hug ever.

    Love Ellie.
    You and me, both, Ellie. None of the doctors or other staff on the ward can believe it.

    I cannot find the words to explain how difficult it is to avoid being totally subsumed by the deepest, darkest abyss. I can't praise the staff on the ward enough for their care and support.

    Thank you for the hug - I need all the hugs I can get at the moment.
    Dina


    Trying to keep positive, but not always managing.

  6. #16
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    Oh Dina, I am speechless too.

    I am sorry but when I saw your timeframes for the CHC I didn't realise you were serious. Its unbelievable!

    I am not surprised you feel so low and helpless.

    Sending you huge hugs too
    Love Debbie x



    I am not surprised you are feeling so low and helpless.

  7. #17
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    Sorry, Dina, i too didn't think you were serious. More hugs .

  8. #18
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    Sorry you are still in there, I can't believe it is taking so long. What a nightmare!!
    Sending hugs
    Sheila x

  9. #19
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    What a carry on, its ridiculous, you must be so fed up.
    Sheila x

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