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Thread: Dis1960 and Chrissie57

  1. #11
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Ellie View Post
    Great news Douglas.

    (now to free the Wythenshawe One )

    Best wishes to you and Chrissie.

    Love Ellie.
    Hi Ellie,

    Don't rush the Wythenshawe One campaign - I need to stay here for a while to keep an eye on the two fire engines full of hunky firemen parked outside my window!
    Dina

    Trying to keep positive, but not always managing.

  2. #12
    Forum Member Kayleigh's Avatar
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    Quote Originally Posted by Gillette View Post
    Hi Ellie,

    Don't rush the Wythenshawe One campaign - I need to stay here for a while to keep an eye on the two fire engines full of hunky firemen parked outside my window!
    It might be too late to put that campaign on hold Dina!

    Apparently TC phoned the Fire Brigade, urgently requesting them to rescue a damsel called Dina aka 'The Wynthenshawe One' (also, famously known as Gillette!).

    The firemen must have realised that, as you are 'the best a man can get', they shouldn't delay rescuing you - and so don't be surprised if a fireman's ladder (and possibly his hose?) appears at your window very soon! LOL

    Love Kayleigh x
    Last edited by Kayleigh; 13th October 2019 at 13:36.

  3. #13
    Forum Member Terry's Avatar
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    Quote Originally Posted by Gillette View Post
    Thanks, Terry. It's my pleasure to hunt forum members down, or even MNDers who are not yet members, and drive them bonkers! No, I just remember how alone I felt when I was in hospital just after diagnosis.
    Hi Dina;

    I try to do the same at meeting and hospital appointments. So often waiting rooms are quite places, sometimes not if I'm in attendance.

    Love Terry

  4. #14
    Forum Member Ellie's Avatar
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    Dina, I am heartened that you can at least get a day pass out of the hospital, but disheartened that the firemen didn't follow through on their rescue mission.....

    The more I think of how your CHC application is being handled and how delay after delay and the uncertainty is affecting you, the angrier I get.

    What happened to the NHS's stated "CCGs will normally make a decision about eligibility for NHS continuing healthcare within 28 days of getting a completed checklist or request for a full assessment, unless there are circumstances beyond its control" ?? And that's not even the timeframe for a Fast Track application, they (allegedly) can be processed in 48hrs if necessary.

    If I were a cynic, I'd say they're trying to wear you down and doing a fine job of it too by all accounts

    Have you the fight in you to complain to your CCG? Or have you an advocate who can act on your behalf? A well constructed formal complaint, not a moan, may get the ball rolling?

    IDK how far you want to go with getting a decision within a reasonable timeframe, or if at all in case you rock the boat and they somehow manage to put your file to the back of the pile, which would be reprehensible. You could involve your MP - they may need you vote soon

    Hope you continue getting the odd day out and can use the HCPs given you're in hospital. For example, the OT should assess your wheelchair needs and provide one which mitigates any pain it causes - they have an explicit duty of care to you.

    And what about your PC access - can they provide anything or can AT / AAT visit you as an inpatient?

    If necessary, involve PALS (again?) and MND Connect?

    It's simply not good enough and the CCG should not be allowed to treat you as they are.

    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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    Oh, Kayleigh, you did make me chuckle! Unfortunately nothing and no-one appeared at my window! Another of life's disappointments!

    That's a kind thing to do, Terry. I can't do that: I might manage to talk to someone sitting next to me, but that's all.

    Ellie, thank you for your anger on my behalf. At the moment, I've lost all my fight. I can't cope with talking about it, typing about it and definitely not thinking about it but my son has agreed to do something.

    My MND is worsening noticeably every day. My life is literally being wasted in here, despite the best efforts of the staff - and they are being tremendously supportive.
    Last edited by Gillette; 13th October 2019 at 19:14. Reason: Too honest
    Dina

    Trying to keep positive, but not always managing.

  6. #16
    Forum Member Kayleigh's Avatar
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    Hi Dina,
    Looks like those firemen had to make a quick diversion to rescue some kittens ....
    http://https://m.youtube.com/watch?v=yuN1BKmx6X4

    Love and hugs
    Kayleigh x

  7. #17
    Forum Member Kayleigh's Avatar
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    Quote Originally Posted by Dis1960 View Post
    Now back home,,
    Welcome home Douglas. I hope the journey home went smoothly and you are enjoying your home comforts.
    Love to you and Chrissie,
    Kayleigh x

  8. #18
    Forum Member Barry52's Avatar
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    Hi Dina,

    We all know that stress is not good for us and goodness knows how much you have to deal with it every day you are trapped inside the hospital. I wish your son good luck with the fight on your behalf and as Ellie mentioned your MP may help.

    I need to give that naughty Kayleigh a talking to for teasing you with the sexy firemen. Meanwhile I will get back to writing my script for the next episode of Casualty “the great escape from Whithenshawe”.

    Sending love and hugs,
    Barry
    Iím going to do this even if it kills me!

  9. #19
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    Oh Dina, like Ellie I am really cross that it is taking so long to sort your CHC package.
    We know how precious each day is and this seems so cruel when you could be at home. I dont know how some people sleep at night ! I really hope your son has success and things get sorted sooner.

    I initially thought you were serious about the hunky firemen ! Ok guilable , middle name and all that ! Kayleigh.I loved the you tube clip.

    Love and hugs,
    Debbie x

  10. #20
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Kayleigh View Post
    Hi Dina,
    Looks like those firemen had to make a quick diversion to rescue some kittens ....
    http://https://m.youtube.com/watch?v=yuN1BKmx6X4

    Love and hugs
    Kayleigh x
    Ha ha ha, Kayleigh. Most of those look gay to me! My half-brother is an Aussie fire officer and one day he and I had to go to his fire station. I joked about hunky firemen but he assured me they weren't - he was wrong!
    Dina

    Trying to keep positive, but not always managing.

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