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    OT visit and decisions

    Today my OT came out to discuss hoist options etc but when here we made some decisions together: she emailed the Council OT to ask her to organise ceilings hoists in our front room and my bedroom. She told me that they don’t usually put ceiling hoists in when someone lives above. That may be because of noise but we get constant noise from above so denying me that option would be unfair.

    We decided that it’s an appropriate time forum me to be assessed for a care package. We discussed the twos options either a care agency having the funding assigned to me so I employ personal assistants. That’ll be the most flexible option and a better chance for a to get to know that people and build up trust. I don’t need much have now but by the time that it’s organised I most likely will.

    We also discussed our local hospice (Bury), Apparently they don’t have services other than outreach workers for moral support. I don’t need that but she referred me anyway.

    Fingers crossed this all doesn’t take too long, Lynne xx
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

    #2
    Lynne K
    Forum Member
    Lynne K good to get assessed and think about care support. Hope everything goes well.👍🏻😘
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

    Comment


      #3
      Thanks Linda, xx
      Lynne K
      Forum Member
      Last edited by Lynne K; 17 December 2021, 13:26.
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.

      Comment


        #4
        You certainly had a productive day Lynne!!

        Originally posted by Lynne K View Post
        She told me that they don’t usually put ceiling hoists in when someone lives above. That may be because of noise
        They aren't that noisy really, not compared to your upstairs neighbour anyway 😏

        Originally posted by Lynne K View Post
        We decided that it’s an appropriate time forum me to be assessed for a care package.
        Might as well start the process, as you say, these things can take time. Good idea to keep control of the package yourself and use PAs 👍👍

        Originally posted by Lynne K View Post
        We also discussed our local hospice (Bury), Apparently they don’t have services other than outreach workers for moral support.
        That's a shame Lynne, isn't it. I wonder if it's due to Covid that they stopped offering their Living Well programme. xx

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

        Comment


          #5
          Ellie
          Forum Member
          Ellie I think that the Bury Hospice both ran out of funds and covid effected Living Well services. My OT told me that the only have open six of their twelve beds because they don’t have enough staff to run the twelve. They only provide end of life care ie the last few days. Also it’s apparently got a very long waiting’s list for bed spaces so unfortunately some people die on the waiting list. Not good at all xx
          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

          I'm staying positive and taking each day as it comes.

          Comment


            #6
            Oh, that's a huge shame for people living in the Bury area. 😟
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #7
              Ellie
              Forum Member
              Ellie yes very true Ellie xx
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

              I'm staying positive and taking each day as it comes.

              Comment


                #8
                Lynne K
                Forum Member
                Lynne K it's good you've been referred to the hospice as you might hear a different story directly from them. If they can't provide adequate support there may be other hospice services locally?
                Fingers crossed😘
                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

                Comment


                  #9
                  Lynne K
                  Forum Member
                  Lynne K
                  Well it sounds like you are cracking on with support for now and the future.Is there a community palliative care team?Not sure if you wanted end of life care in Bury Hospice or doing your research.There maybe a team that supports end of life care at home?
                  Things can change and as LindaB said when you talk to hospice team there might be a different story.Also is there the possibility of crossing counties if there is a nearer hospice?
                  Best wishes
                  Mary.

                  Comment


                    #10
                    Mary and Linda thanks for your comments but I don’t have a clue about other hospices near to our border. Bury Hospice don’t do hospice at home either. I asked about that. Xx
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                    I'm staying positive and taking each day as it comes.

                    Comment


                      #11
                      Lynne K
                      Forum Member
                      Lynne K I feel you'll know more once you can meet with someone from the Bury Hospice. There must be other services ...do you come under Greater Manchester? xx
                      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

                      Comment


                        #12
                        Lynne K
                        Forum Member
                        Lynne K this is on the Bury Hospice web site..👍🏻xx

                        ​​​​​​​"The Outreach Team supports patients and families in their own homes through the provision of education, personal, practical and emotional support for short periods of time.

                        Our Outreach team work collaboratively with health and social care professionals, to ensure that those patients who wish to be cared for at home, surrounded by their family and friends, are able to do so.

                        The team consists of a Nurse Team Coordinator and four Outreach Support Workers who are highly skilled, motivated and committed in delivering all aspects of specialist palliative and end-of-life care to people whose preferred place of care is in their home. The team have extensive knowledge and skills in palliative care.

                        The team provides care Monday to Friday between 9 am and 5 pm (excluding Bank Holidays) "
                        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

                        Comment


                          #13
                          Thanks Linda but that might be out of date because it was my OT who has dealings with Bury Hospice for both her cancer patients and those were MND who she usually doesn’t refer. xx
                          Lynne K
                          Forum Member
                          Last edited by Lynne K; 17 December 2021, 13:29.
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                          I'm staying positive and taking each day as it comes.

                          Comment


                            #14
                            I could do with the hoist now but still just about managing to get myself up to get my wheelchair from my bed and from my RR chair using my walker to my powered wheelchair. But these won’t be for long now.

                            It’s been over two months that I’ve been waiting for the Council to do the agreed adaptions and a new request was put through by my OT for a ceiling hoist a few days ago. It doesn’t bode well 😏😖 xx
                            Lynne K
                            Forum Member
                            Last edited by Lynne K; 18 December 2021, 13:30.
                            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                            I'm staying positive and taking each day as it comes.

                            Comment


                              #15
                              Lynne K
                              Forum Member
                              Lynne K It is so frustrating and scarey. I'm in a similar situation, but I can no longer transfer at all (for the last couple of weeks). We're awaiting building work starting after the Christmas/New Year break. I will then have a ceiling hoist. We are using a stand assist to transfer me although I can't actually stand so I'm just sitting in the sling, but it can be tricky and will fail me. My OT has been trying to get me a gantry hoist as a temporary measure, but our NHS stores have deemed it unsuitable for our line which is where we're sleeping at the moment. I've been told in no uncertain terms of things can't be put in place and the stand assist stops working, I'll be living in hospital until our works are completed. Any possible solutions seem to be a survey which all takes time and time is something in rapidly running out of.🤞🤞🤞
                              Would a stand assist work for you while you're waiting for your adaptations?
                              Hope you get something sorted out soon xx

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