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    Hospital withdraw treatment

    I request urgent advise in relation to a hospital Consultant’s decision to withdraw medical intervention for a MND patient . The patient is to be sedated prior to either returning home / or being admitted into a Hospice next week. The following day life support will be removed or reduced while the patient remains under sedation. The patient has to be sedated as the patient is conscious and has comprehension.

    The patient returned to hospital due to a package of care folding. The patient refused to return to hospital upon arrival of the ambulance organised by Continuing Health Care. The GP had documented the specific request of the patient not to return to hospital purposefully in fear of withdrawal of treatment.

    The patients has a hospital acquired infection and responds to antibiotics but as the infection is expected to return one day, the hospital Consultant and Palliative Care Team and Continuing Health Care team have decided to instigate end of life Care next week.

    #2
    I can't really offer advice. But I'm shocked and disgusted. Isn't it the MND sufferers decision whether or not to withdraw treatment?
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

    Comment


      #3
      Hello Lynne

      The patient is not aware. I am so fearful of repercussions Lynne that I dare not elaborate
      as I fear that I may make matters worse. If this is at all possible. I love the patient.

      Juliette

      Comment


        #4
        Hi Juliette

        Is it possible that you could give us a call to discuss this? Withdrawal of treatment is a complex situation and it would be easier to discuss it over the phone if possible. The conversation would be confidential. Our number is a freephone number and it's 0808 802 6262.

        Best Wishes

        Rachel

        Comment


          #5
          Hi Juliette,

          Sounds like euthanasia which is unlawful. I would contact the press or BBC urgently.

          Love Graham
          Copyright Graham

          Comment


            #6
            Good afternoon Juliet

            Is the person concerned able to communicate in anyway? I realise if they are deep into MND they may have lost their voice but must have been able to do so in some way to communicate in that they did not want to go into hospital again -

            As I've said elsewhere there is one way of looking at hospital as being somewhere where you going with one thing wrong come out with two more.

            And do ring MNDConnect - excellent team there
            Warmly


            Andy

            ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
            MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

            "Things turn out the best for people who make the best of the way things turn out"

            Comment


              #7
              Hello Lynne, Rachel, Andy and Graham.

              Thank you so much for your for your interest shown in mum’s dilemma. Fortunately there had been a sea change (I had contemplated the court of protection) but the Consultant has decided to prescribe an antibiotic three times a week that will hopefully keep any possible future infection at bay and encouragingly the plan is now for mum to return home. An easy enough statement to make but an almost impossibility to carry out given the CCG, CHC & HCM teams.

              Comment


                #8
                Thanks for the update Juliette. Good luck for your mums homecoming, a turnaround of all the negative services and your mum's systedealing successfully with the infection with the help of antibiotics. Lynne x
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                I'm staying positive and taking each day as it comes.

                Comment


                  #9
                  I'm so sorry your mum was brought to the brink Juliette. I cannot imagine the torment you were put through and you still have massive uncertaintity now re getting your beloved mum home.

                  Is there any chance she could go into a hospice for symptom management ? Applying for CHC as a hospice inpatient might speed up the process - a hospice may not take a patient though for an undefined period...

                  Look after yourself and sending you a big hug.

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

                  Comment


                    #10
                    Hello Lynne, Rachel, Andy and Graham.

                    Thank you so much for your for your interest shown in mum’s dilemma. Fortunately there had been a sea change (I had contemplated the court of protection) but the Consultant has decided to prescribe an antibiotic three times a week that will hopefully keep any possible future infection at bay and encouragingly the plan is now for mum to return home. An easy enough statement to make but an almost impossibility to carry out given the CCG, CHC & HCM teams.

                    Comment


                      #11
                      Hi Juliette

                      Thank you for letting us know. I am pleased to hear that the Consultant has decided to prescribe another antibiotic.

                      If you have any further concerns then please don't hesitate to contact us again on 0808 802 6262.

                      Best Wishes

                      Rachel

                      Comment


                        #12
                        Hello you lovelies

                        In answer to your question Ellie mum experienced no problem in receiving CHC funding (with no upper limit). The problem was with the CHC allowing an Agency to provide the care required at home. What should have been a two month hospital admission last year turned into ten months thanks to the CHC and Health Case Management Team. Mum was medically fit for discharge but it took eight months of fighting against a Nursing Home admission. Apparently the Nursing Hone placements are purchased ‘on block’ making them a darn sight cheaper!.

                        Comment


                          #13
                          Oh my days Juliette, that is utterly appalling. Your mum isn't a commodity but a real person with real feelings and a family with the same.

                          The only thing I can say is a feeble Good Luck in getting your mum home.

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

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