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    #16
    Sorry to hear all this Dina, I hope it all gets sorted out for you. Sending hugs
    Sheila x

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      #17
      Hi Everyone,

      I had an appointment at Wythenshawe Hospital this afternoon. When they heard how things have been they suggested I be admitted and I agreed so that’s where I am for the time being.
      Dina

      Trying to keep positive, but not always managing.

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        #18
        Thank you for your support, everyone. I can’t tell you how welcome it is.
        Dina

        Trying to keep positive, but not always managing.

        Comment


          #19
          Hi Dina,

          I am sorry to hear that you are back there but hopefully your husband can recop and they will sort out a proper care package before you go home.

          Best wishes, Terry
          Last edited by Terry; 20 August 2019, 23:59.
          TB once said that "The forum is still the best source for friendship and information."

          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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            #20
            Hi Dina,

            It's probably good you had an appointment at Wythenshawe today because someone there might be able to get things organised concerning an urgent CHC application for you. Sorry you've had to be admitted into hospital though. Hopefully the doctors and nurses are making you comfortable and the food is ok.

            I hope social services realise the stress and worry you and your partner have been put through, due to their uncaring attitude and their failure to provide you with the carers you are entitled to.

            I was reading the Care Act 2014 today and was interested to find out that the Local Authority not only has a statutory duty of care towards you but also to your partner (as he is your carer). It sounds like social services have probably been failing in their duty of care where both of you are concerned, because the non-provision of carers could potentially have a negative affect his health and well-being, as well as yours.

            It's terrible that despite all the legislation and NICE guidelines, MND patients and their carers still don't always receive the respect and high standard of treatment and care they should be getting and are legally entitled to.

            Hopefully, the situation concerning your carers will be rectified very soon. I also hope you and your partner get much better treatment from social services from now on.

            Hopefuĺly your hospital bed is nice and comfy - I expect you could do with a good night's sleep, as today has probably been particularly tiring for you!

            I hope you have a restful sleep tonight and a relaxing day tomorrow.

            Love Kayleigh xx
            Last edited by Kayleigh; 20 August 2019, 21:42.

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              #21
              Hi Dina, it's good that you are safe in Wythenshawe. I too hope that your hospital bed is comfy and that the staff look after you well. I also hope that Peter is ok on his own. Lynne
              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.

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                #22
                Hugs to Dina both for the terrible treatment by the social worker and your read:ittance tó Wythenshawe

                Could your GP help with finding carers or chc forms

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                  #23
                  Originally posted by Dis1960 View Post
                  Hugs to Dina both for the terrible treatment by the social worker and your read:ittance tó Wythenshawe

                  Could your GP help with finding carers or chc forms
                  Thank you. Hugs always gratefully received.

                  My OT emailed yesterday to say that the wheels have started turning for a fast-track application for CHC funding.
                  Dina

                  Trying to keep positive, but not always managing.

                  Comment


                    #24
                    Originally posted by Lynne K View Post
                    Hi Dina, it's good that you are safe in Wythenshawe. I too hope that your hospital bed is comfy and that the staff look after you well. I also hope that Peter is ok on his own. Lynne
                    Thanks, Lynne. The staff have been lovely. Peter and I agree that being admitted was a good thing. It may well be that I stay in until 02 September when I am scheduled to have a PEG fitted and another procedure - it depends on when a care package can be set up.
                    Dina

                    Trying to keep positive, but not always managing.

                    Comment


                      #25
                      Hi Dina

                      I am so relieved to hear that some things are now moving in the right direction, and especially that you're safe.

                      Hugs

                      Doug

                      Comment


                        #26
                        Hi Dina,

                        I know you'd rather be at home with carers but I am glad you're being looked after, which must be a relief for bouth you and your partner and lower the stress levels.

                        It does make sense to stay until your PEG procedure, rather than send you home into the same situation from which you came.

                        Maybe the CHC will be granted "easier" because you'll be an inpatient waiting to be discharged?

                        If I can be of any help re meds or whatever, please ask

                        big hug.jpg


                        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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                          #27
                          Thanks, Doug. Thanks, Ellie.

                          I don’t mind being an in-patient - at the moment it is the best place for me. The last three weeks have been very difficult for all sorts of reasons and taken their toll on each of us. They have also prompted a more speedy advance in my MND - and it was going fast enough before.
                          Dina

                          Trying to keep positive, but not always managing.

                          Comment


                            #28
                            Originally posted by Gillette View Post
                            until 02 September when I am scheduled to have a PEG fitted and another procedure
                            You also are in the right place if there are any cancellations. Good luck and good wishes

                            Comment


                              #29
                              That’s true. Mind you, there’s no chance of the second procedure being brought forward as the anaesthetist is in France!
                              Dina

                              Trying to keep positive, but not always managing.

                              Comment


                                #30
                                Just checking Dina;

                                The anaesthetist will be present during the PEG procedure to monitor your vitals and not because you're having a GA? (I know you said before that you'll be using the Nippy during the procedure)

                                Oh to be in France......

                                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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