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    #46
    Stick to your guns and take no sh#t! ๐Ÿ’ช๐Ÿ˜๐Ÿ‘๐Ÿค—xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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      #47
      You can appeal..look on beacon siteโ€ฆ..IF they turn you down which needs to be in writing.Might be worth saying you are considering employing a company to support you to get Chris home via CHC funding.

      The CHC can provide home care using various resources such as hospice team who support people at home, district nurse team,ad other health professionals.
      Any discharge plan needs to be discussed with you both before he leaves the hospice with care arranged.Otherwise the situation could break down easily.

      I would suggest that you may have to pay for cleaning but not health care.
      Good luck
      Mary x

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        #48
        Originally posted by Music man's wife View Post
        They have also said I can't appeal as they haven't turned it down.
        Isn't that just plain mean - they're playing games leaving you and Chris in limbo... xx
        โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        โ€‹

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          #49
          So CHC will definitely not fund care at home due to safety and sustainability concerns so his discharge from the hospice will be without any funded care.
          We can pay for a carer to come in every morning and evening and we've been advised if we need any assistance to go to A&E.
          Its a cruel world out there.

          Comment


            #50
            Music man's wife that's outrageous....completely infringes his Human Rights....so sorry you're treated so badly.
            I know you can't go into great detail here but I can assure you in my professional opinion this is all wrong. I'd love to know the CCGs rationale and risk assessment that says care at home is impossible!!!
            What's worse is this is happening with you both in such a vulnerable position...If you have the strength I would advise you seeking legal advise from a specialist solicitor....and let the CCG know.

            Awful....keep strong and I hope you have support from family and friends๐Ÿ™

            https://www.irwinmitchell.com/person...healthcare-law

            Just one example of a law firm specialising in CHC
            Last edited by LindaB; 17 January 2022, 15:40.
            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.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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              #51
              Originally posted by Music man's wife View Post
              So CHC will definitely not fund care at home due to safety and sustainability concerns so his discharge from the hospice will be without any funded care.
              We can pay for a carer to come in every morning and evening and we've been advised if we need any assistance to go to A&E.
              Its a cruel world out there.
              Thatโ€™s disgusting. I would appeal if you can and if you can afford it then get a solicitor involved. Good luck 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


                #52
                Music man's wife I'm so sorry for you both and would say, if you can, fight the decision - plenty of people with ALS/MND have been granted CHC for 24/7 care in their own home. xx
                โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                โ€‹

                Comment


                  #53
                  Thanks all. I think we'll roll with it, it's too distressing for Chris and I'm going to ask them at the hospice not to discuss his future care with him.
                  I'm going to save my energy for looking after him at home.
                  Take care xxxx

                  Comment


                    #54
                    So there has been a little bit of give with CHC. The hospice have offered to care for Chris one week in every four. Chris is happy with this.
                    They are also will to pay for minimal care 6/8 hours a day, however they want Chris to sign ( he can't pick up a pen) a risk assessment form saying he is willing to sit in his chair, soiled, uncomfortable or fatigued when we don't have the additional care needed.
                    So I've written to CHC asking how I can complain and to add we will not be agreeing to a care package that is inhumane and doesn't adequately meet his care needs.

                    Comment


                      #55
                      Originally posted by Music man's wife View Post
                      They are also will to pay for minimal care 6/8 hours a day, however they want Chris to sign ( he can't pick up a pen) a risk assessment form saying he is willing to sit in his chair, soiled, uncomfortable or fatigued when we don't have the additional care needed.
                      That has upset me so much that I simply have no words of comfort, and I'm not the person who was told this unforgiveable thing. ๐Ÿ˜ช๐Ÿ˜ช๐Ÿ˜ช๐Ÿ˜ช
                      โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      โ€‹

                      Comment


                        #56
                        Originally posted by Music man's wife View Post
                        So there has been a little bit of give with CHC. The hospice have offered to care for Chris one week in every four. Chris is happy with this.
                        They are also will to pay for minimal care 6/8 hours a day, however they want Chris to sign ( he can't pick up a pen) a risk assessment form saying he is willing to sit in his chair, soiled, uncomfortable or fatigued when we don't have the additional care needed.
                        So I've written to CHC asking how I can complain and to add we will not be agreeing to a care package that is inhumane and doesn't adequately meet his care needs.
                        I hope you have a copy of that form - so called risk assessment - appalling behaviour from the CCG. Remember to quote Human Rights Act...a law firm would have a field day with this๐Ÿ˜ 
                        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.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

                        Comment


                          #57
                          Originally posted by Ellie View Post

                          That has upset me so much that I simply have no words of comfort, and I'm not the person who was told this unforgiveable thing. ๐Ÿ˜ช๐Ÿ˜ช๐Ÿ˜ช๐Ÿ˜ช
                          I don't want to cause you upset Ellie ((((hugs))))

                          Comment


                            #58
                            Originally posted by LindaB View Post

                            I hope you have a copy of that form - so called risk assessment - appalling behaviour from the CCG. Remember to quote Human Rights Act...a law firm would have a field day with this๐Ÿ˜ 
                            After I read this Linda I've played my ace. Our daughter has a friend who's a barrister, I think it's the Garden Court Chambers, I've emailed him.
                            Last edited by Music man's wife; 28 January 2022, 21:00. Reason: Garden Court Chambers

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                              #59
                              Music man's wife good for you! I'd also suggest if you're up to it fire off an e-mail to your local councillor....it's surprising how people sit up and take notice once it gets political.

                              Good luck๐Ÿ˜‰๐Ÿ˜˜
                              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.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

                              Comment


                                #60
                                Originally posted by Music man's wife View Post
                                Our daughter has a friend who's a barrister, I think it's the Garden Court Chambers, I've emailed him.
                                Good for you - hope he throws the book at them.

                                I've calmed down somewhat, but to think that anyone in the 'caring' system saw fit to even suggest that it might be appropriate to leave a disabled, terminally ill person sit in pain and sleep in the aftermath of being unable to get to a toilet, is unforgiveable.

                                Best of luck xx



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

                                โ€‹

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