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    #31
    More power to your elbow. πŸ’ͺπŸ˜πŸ‘€πŸ€—xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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      #32
      Music man's wife
      Hi , have you received this information in writing ??
      What can the complex care home offer that’s not possible to provide to Chris at home?
      Many people choose to remain at home until the end of their journey supported by hospice/ palliative care team.
      Have you read up on the appeals procedure( google it)?

      A five hour round trip Is not acceptable and clearly not to your husband if as the result of this information he is considering withdrawing ventilation.So sad for you both as only a couple weeks ago you posted how positive he was feeling.

      Hope this gets resolved soon and Chris gets home with a carer team to support his care needs.You must be emotionally exhausted too.

      Best wishes
      Mary x


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        #33
        Originally posted by Music man's wife View Post
        So CHC have now declined funding for Chris and want him to go to a complex care home in Newcastle, that's 2.5 hours away.
        I agree - you should have been given a full explanation as to why CHC funding is available for an expensive complex care home, and not available for Chris to stay in his own home.

        There are people with MND and have a tracheostomy living at home with 24/7 care funded by CHC, which is heaps more complex than NIV, so you both deserve to know what's behind their ruling. xx
        ​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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          #34
          "If you are eligible for continuing healthcare then the NHS are responsible for the delivery and management of your care. This means that the Clinical Commissioning Group (CCG) have final say as to where that care is delivered although the CCG should consult with you as to your preferences. The CCG should ensure that their preferred care setting meets your assessed health and social care needs, including psychological and emotional needs. The CCG must also demonstrate that they have fully considered the wishes of your representative if you have one before making a decision, and should commission care services that maximise personalisation and individual control."

          https://www.beaconchc.co.uk/ take a look on this website for free
          ​​advice.....

          See also https://caretobedifferent.co.uk/nhs-...hcare-at-home/

          Contact your local councillor too

          Suefromwakey
          Last edited by LindaB; 11 January 2022, 15:58.
          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.​​​​​​

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            #35
            My new carers administer my meds, set up my pump and all sorts of other stuff. CHC are sending me a list of the care homes I can apply for. πŸ“ƒπŸ˜πŸ€—πŸ˜˜xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #36
              Originally posted by matthew55 View Post
              CHC are sending me a list of the care homes I can apply for.
              Oh, so it's definitely CHC you got? xx

              ​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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                #37
                I tole you my brains going. 🀯πŸ€ͺ😘😍xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                  #38
                  LindaB
                  I messaged music makers wife to read Beacon site on CHC too as outlines process of assessment and appeals too.Hope they get a good outcome.So much stress for them .
                  Best wishes
                  Mary x

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                    #39
                    Mary C ultimately no one can be forced to live in a nursing home...outrageous behaviour from the CHC😘
                    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


                      #40
                      Music man's wife If there continues to be an issue with CHC and the care package then please do give us a call on 0808 802 6262. We're always happy to get involved.

                      The suggestion of Beacon is also a good one as they are experts in dealing with CHC and they provide 90 minutes of free advice (this can be spread out, not necessarily 90 minutes all in one go).

                      Best Wishes

                      Rachel
                      MND Connect Adviser
                      MND Connect
                      Contact us on 0808 802 6262 or at [email protected]

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                        #41
                        Originally posted by Music man's wife View Post
                        So CHC have now declined funding for Chris and want him to go to a complex care home in Newcastle, that's 2.5 hours away.
                        Said I would take it to the papers as I know someone in PR and they have asked me to hold off a couple of days.
                        Poor Chris has now started to talk about withdrawing ventilation.
                        Article 8 of the Human Rights Act 1998...is the "right to respect for your family and private life... "

                        Anyone advocating for Chris should quote and remind whoever that his human rights cannot be infringed.

                        There are many law firms just waiting to pick up cases like this. I'm hoping it's sorted amicably before you have to get to that point...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. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                          #42
                          Thanks all. We have laid our cards on the table. No to the nursing home. When they choose to discharge him from the hospice it will be with funded care from CHC or we'll just manage as best we can supplemented by any care we can afford.
                          In all fairness the hospice are doing the best they can to set up a care package. The brick wall is CHC, their concerns are safety and sustainability so won't approve anything until these concerns are addressed to their satisfaction.
                          Its out of our hands but we do have a back up plan. Best we can do.
                          Last edited by Music man's wife; 15 January 2022, 11:07. Reason: Bit of clarifying, but I could write a book.

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                            #43
                            [QUOTE=Music man's wife;n73531]Thanks all. We have laid our cards on the table. No to the nursing home. When they choose to discharge him from the hospice it will be with funded care from CHC or we'll just manage as best we can supplemented by any care we can afford.
                            In all fairness the hospice are doing the best they can to set up a care package. The brick wall is CHC, their concerns are safety and sustainability so won't approve anything until these concerns are addressed to their satisfaction.
                            Its out of our hands but we do have a back up plan. Best we can do.[/QUOTE

                            Very much good luck, 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.

                            Comment


                              #44
                              I should add once we refused the care home, CHC became very slightly more amenable to care at home.
                              They have also said I can't appeal as they haven't turned it down. They just aren't agreeing to anything.
                              What a carry on!

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                                #45
                                Thanks Lynne xx

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