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    Success with GP

    After my neurologist writing twice to my GP about adopting a Shared Care Protocol they have at last prescribed me Rilozole.

    I got so annoyed with them I threatened a complaint to NHS England, a letter to my MP and me contacting The Express. I also detailed their poor performance in getting my diagnosis and sent them the Red Flag tool.

    Now to get them to prescribe Glycopyrronium Bromide!

    Diagnosed 3rd November 2021 Bulbar Onset

    #2
    πŸ‘πŸ‘πŸ’ͺ Gill.

    Here's hoping the GP has learnt a lesson from the Riluzole farce and won't question the Glyco 😬🀞🀞
    ​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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      #3
      GillB I had a similar experience but not to the extent you have been through. My g.p kept getting an admin lady to ask me to contact the neurologist re the arguing of who prescribed riluzole. Eventually i made a formal complaint and asked to see gp. He did apologise when I told why was I left to do his job. I hope it goes smoothly from now on x
      Diagnosed May 2021 bulbar onset als.

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        #4
        Sadly the GP is the weak link in my care. Glycopyrrium caused a big issue, only resolved when hospice palliative care consultant got involved. (This is my first post using eye gaze on TD Pilot!)
        Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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          #5
          Originally posted by PeterPan View Post
          (This is my first post using eye gaze on TD Pilot!)
          πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          ​

          Comment


            #6
            Well done PeterPanπŸ‘
            Diagnosed May 2021 bulbar onset als.

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              #7
              Well done PeterPan πŸ‘πŸ‘

              I will.probably have to go down that route too.
              Diagnosed 3rd November 2021 Bulbar Onset

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