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    Specialist nurse

    Something to be happy about,
    I often read comments about speak to your specialist nurse, unfortunately our health authority doesn’t have one. There are only about a dozen of us, so not worth the expense. Anyway, we have one on loan from a neighbouring HA, for 3 months, as a trial , what a wonderful person she is, I’ve only met her the once, but already she is organising things that should have been done nearly 2 years ago, she is running through the NICE guidelines and is amazed that none of it was followed​​​​​ or that we have no direct support contact. We have had to manage it by ourselves. My friend even paid privately for a nutritionist!
    Even better, because we are a rural area, she brings the clinic to our house, brilliant.
    It was so nice to have someone to say leave it to me I’ll get it sorted

    Just have to hope she makes a strong case to continue after the trial period.
    s
    As long as there’s golf and beer I’m happy

    #2
    Sounds very positive. Long may it continue. That's what you need someone to take over so you don't have to worry when you have enough to focus on.

    love and hugs Denise xxx 😚
    when i can think of something profound i will update this.

    Comment


      #3
      Hi Shaun, it does seem to be a postcode lottery.Is there a local hospice?Or community palliative care team?
      Trouble is with MND our needs can change rapidly so we need ongoing support from various health professionals.
      Really hope this nurse can link you into some longer term support when she has to move on.
      Best wishes
      Mary

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        #4
        Great stuff Shaun, I hope she's reassigned to your area permanently 🤞🤞 It would be cruel to show you how good it is to have an effective specialist nurse, only to then take away that service 😟

        Do you know whose idea it was to set up the trial??

        Love Ellie.

        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #5
          Pay her lots to stay 😉
          when i can think of something profound i will update this.

          Comment


            #6
            [QUOTE=Ellie;n55756

            Do you know whose idea it was to set up the trial??

            hi Ellie, it appears that the HA’s have merged, but not all services, I suspect it was consultant pushing for it as he covers both areas
            and she attended the MDT meetings, down to the bean counters at the end of the day but as their are so few us, about 60 in both HA’s
            dont see it would be a problem
            s



            As long as there’s golf and beer I’m happy

            Comment


              #7
              There is now a sub forum in Life with MND - it is called, Treatments and Medication. If you look in there you willl see what has or is being researched. Much of it is for those of us with wonky genes - but there are other things going on too, and some are up to patient trials.
              Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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                #8
                60 very deserving people though, eh!! Really hope they keep her covering both HAs. xx
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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