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Thread: Ventilation

  1. #151
    Forum Member Gillette's Avatar
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    Yes, Lynne, I think we are very lucky with the NHS services locally.
    Dina

    Trying to keep positive, but not always managing.

  2. #152
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    Hi Ellie
    As you know with MND things can change by the day. As long as his weight is maintained etc we will cope. We will definitely look at overnight feeds if needed though. At the moment I put water up and give meds before and after feeds so not a problem yet. xx

  3. #153
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    Nice to meet you today Dina

    Great wheels too
    Last edited by Dis1960; 26th September 2019 at 18:13.

  4. #154
    Forum Member Terry's Avatar
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    It's always nice to meet other people from the forum.

    I just wish it was in a different situation.

    Love Terry

  5. #155
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Dis1960 View Post
    Nice to meet you today Dina

    Great wheels too
    Thanks, Douglas. It was good to meet you too. The wheels might look the part but, my goodness, it is so uncomfortable.
    Dina

    Trying to keep positive, but not always managing.

  6. #156
    Forum Member Gillette's Avatar
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    If you feel like being bored, read on...

    My CHC Funding journey continues apace, albeit slower than a snail's pace.

    The CHC Panel met on Wednesday and discussed my case - but no decision was reached! They have said they need the case looked at by independent third parties including... social services. I cannot figure out how the organisation that decided to ignore its Duty of Care to me, can be regarded as "independent". The CHC Nurse wouldn't give me any real information about what the Panel wanted, who else they would be asking, or when a decision was likely to be made. All very unsatisfactory.

    The CHC Nurse had discussed my case with her Lead Nurse and, between them, they agreed that she should begin taking steps to set up a care package for me. She had found an agency who think they can provide the whole package. Someone from the agency has contacted the ward and is coming to see me on Monday.
    Dina

    Trying to keep positive, but not always managing.

  7. #157
    Forum Member Terry's Avatar
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    Sorry Dina, that it's so slow and no information.

    Love Terry

  8. #158
    Forum Member Ellie's Avatar
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    What mixed messages you're being given Dina

    I take some positives that the CHC Nurse has identified a potential care company and they're coming to see you on Monday, though, at the same time, she's referring your case back for 'independent' scrutiny...

    When talking to the care company, don't be too put off if they're not experienced in dealing with people with MND - the attitude and aptitude of carers tends to be more important than previous experience with someone with MND.

    Hope this whole sorry mess gets sorted very soon.

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

  9. #159
    Forum Member Gillette's Avatar
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    I'm getting so fed up - the more so as it's getting harder each day to type and then my hand touches the screen and it all disappears. Grump. Grump. Moan.
    Dina

    Trying to keep positive, but not always managing.

  10. #160
    Forum Member Terry's Avatar
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    Hi Dina;

    Touch screens can be more difficult than laptops and keyboards. I have troubles with long nails and curling fingers quite often.

    That's all you need, more hurdles .

    Hugs Terry

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