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    Utterly confused

    Yesterday I was discharged from the Hospice being told by them to contact my GP about meds. But my GP told me to speak to the palletive care team at the Hospice regarding my meds. He's currently on Holiday. Who knew that dying would be so difficult? πŸ€”πŸ˜•πŸ€—πŸ˜šxx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Morning matthew55 my GP just called to enquire if the palliative care hospice team were supporting me (I nearly fell of my sofa for a GP to ring me without being askedπŸ˜‚)
    It doesn't sound to me that the hospice should have discharged you at all. I think the palliative care team will want to ensure you have anticipatory medicines in place at home...in case needed outside of pharmacy hours. You're right to go back to the GP they need to sort this for you.
    Good luckπŸ€—
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

    Comment


      #3
      Hi matthew55

      WOW that's unbelievable and so wrong.

      Hubs Hospice at home team assured us they are there to the end.

      As long as we stay in the catchment area.

      I would phone the Hospice team and ask for a letter with the reasons why, in writing.

      My experiences with the social and things is they hate having to put stuff in writing. And I have know them to reverse their decisions because of this request (not a gurantee).

      I would contact the Practice manager of the GP practice to clarify if this is normal, in your area.

      Hospice care is for incurable conditions not just cancer and not just end of life.


      i would then get on to the MND association/MND nurse/ and or consultant team and get someone local to advocate for you because it can be exhausting.

      I would also contact your local MP.

      I had to do this for my dad with dementia when he was getting messed about.

      Good luck and keep us up dated.

      It sounds like a right kick in the teeth from people who you would think would be there.



      Hugs Donna


      Carer for Husband, Diagnosed MND July 2020

      Comment


        #4
        Hi Matthew,
        I too am suprised you have been discharged from hospice care with no information where ongoing support and medication is coming from.
        As Donna said You need to make sure you get this information,
        My palliative nurse brought anticipatory drugs a month or so ago.District nurses monitor RIG and bring any dressings I need.
        The hospice team include the OT and she rings fortnightly and comes out when needed.
        Good luck
        !ary

        Comment


          #5
          Thanks girls it's still sinking in but when my doc gets back I will get it sorted out. πŸ‘πŸ€—πŸ˜˜πŸ˜xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

          Comment


            #6
            Don’t run out of medication.Surely there is more than one doctor ? Could another GP in your surgery help with this issue.
            Mary

            Comment


              #7
              After years of working for the NHS I can safely say they couldn’t organise a piss up in a brewery!
              Just had a leaflet from hospice and certainly no drugs even though it had been discussed .
              Matthew I do hope your not intending to die at an unsociable hour or on a bank holiday 🀣🀣Jane xx

              Comment


                #8
                matthew55 πŸ€” Is this about who issues the actual prescription for your meds? xx
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                ​

                Comment


                  #9
                  My doc does but the consultant from the hospice had some good ideas.
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                  Comment


                    #10
                    Originally posted by matthew55 View Post
                    My doc does but the consultant from the hospice had some good ideas.
                    This is what happens on the meds front between me, the hospice Consultant and my GP, for what it's worth and apologies if it seems very basic...

                    If I and the Consultant wants to add or remove a medicine or change a dose, or add in a therapy such as a nebuliser, she'll tell my GP in writing and my GP will do as suggested - it's the same as being discharged from a hospital with new or changed meds, isn't it?

                    I'm glad the hospice Consultant had some good ideas, you could do with fresh ideas to try 😘😘
                    ​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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