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    #61
    Originally posted by Ellie View Post
    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


    Thank you Ellie, I'm going to use what you've written there, hope you don't mind xxx

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      #62
      Quote away Music man's wife πŸ‘πŸ‘πŸ˜˜
      ​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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        #63
        Heard back from daughters friend, the barrister, he's looking for a local court of protection. This panicked me a bit as Chris has capacity but then I read they ensure your human rights are respected.
        Any opinions?

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          #64
          Take any help you can get. Stay Strong πŸ€—πŸ€—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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            #65
            Music man's wife I think that sounds the right course of action Court of Protection & Human Rights Act. CCG need to know this is being taken taken further....they may then play ball to prevent further action?
            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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              #66
              Originally posted by LindaB View Post
              CCG need to know this is being taken taken further....they may then play ball to prevent further action?
              I agree πŸ‘πŸ€ž
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              ​

              Comment


                #67
                https://twitter.com/cascaidr/status/...GdaCaS77w&s=19

                belinda schwehr
                is as sharp as they come & her legal expertise regarding CCG and the legal framework is 2nd to none.
                Last edited by LindaB; 4 February 2022, 18:57.
                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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                  #68
                  Music man's wife

                  I am so sorry you both are going through this.

                  CCG seem different in each region and I know there was a court case and a person was legally left in soiled adult nappies over night (not MND related).

                  But others are getting over night care at home.

                  I hope you get joy from the lawyer.

                  Can you connect to your local MP about the situation?

                  I have had great support from my mum's MP regarding dementia care. I would definately alert them to the situation.

                  I have just emailed my MP about a minor petition but from his automatic reply, it is obvious that he advocates for his consituents (asking for DWP references etc)

                  From my reading it is a total post code lottery, please keep fighting.

                  I would also connect the MND association because I believe they have helped others

                  Best wishes to you both
                  Donna

                  Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

                  Comment


                    #69
                    So a bit of an update. CHC agreed to fund care for 12 hours a day. I'm the 24 hour carer with 12 hours per day of support. Chris came home nearly two weeks ago. Have to say it's been a tremendous struggle.
                    The good news is he goes back in the hospice one week in four.

                    Chris is happy to be home though it's frustrating for him as he can't do all the things he enjoys. He misses the security of the hospice where sometimes 4 staff got him up. He knows I struggle as do his other carers. It can easily take over 2 hours to get him up.
                    We had to sign a risk assessment basically saying if this didn't work it's the General hospital or the care home in Newcastle, possibly included other things but we were so sick of the whole carry on, we signed and left.
                    Anyhow that's us, take care everyone.

                    Comment


                      #70
                      Originally posted by Music man's wife View Post
                      So a bit of an update. CHC agreed to fund care for 12 hours a day. I'm the 24 hour carer with 12 hours per day of support. Chris came home nearly two weeks ago.
                      Thank goodness you got some help at least. Hugs xx
                      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                      Comment


                        #71
                        Originally posted by Music man's wife View Post
                        CHC agreed to fund care for 12 hours a day. I'm the 24 hour carer with 12 hours per day of support.

                        ...

                        We had to sign a risk assessment basically saying if this didn't work it's the General hospital or the care home in Newcastle
                        That's such a contradiction in terms Music man's wife it must stick in your throat - we'll give you 12hrs of help per day to care for Chris and if you cannot cope, we'll send him off to a place where he'll get 24hr care because that's what he needs. It's like they're almost setting you up to 'fail'.

                        There is zero logic in that - seems that someone (vindictive) has made up their mind and will not back down, no matter who suffers 😟 I don't blame you for throwing in the towel, it's too hurtful...

                        It's good for you both that Chris gets to go back to the hospice 1 week in 4. 😘😘
                        ​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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                          #72
                          Music man's wife how about asking the hospice to record exactly what support they give to Chris in a 24hr period. This to be replicated at home.
                          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


                            #73
                            Originally posted by Ellie View Post

                            That's such a contradiction in terms Music man's wife it must stick in your throat - we'll give you 12hrs of help per day to care for Chris and if you cannot cope, we'll send him off to a place where he'll get 24hr care because that's what he needs. It's like they're almost setting you up to 'fail'.

                            There is zero logic in that - seems that someone (vindictive) has made up their mind and will not back down, no matter who suffers 😟 I don't blame you for throwing in the towel, it's too hurtful...

                            It's good for you both that Chris gets to go back to the hospice 1 week in 4. 😘😘
                            You are dead right Ellie, we had a health professional visit us this week, her words were, they have set us up to fail.
                            However things have settled down, we have got into a routine and things are working well.
                            I just hope some people can sleep at night.

                            Comment


                              #74
                              Originally posted by LindaB View Post
                              Music man's wife how about asking the hospice to record exactly what support they give to Chris in a 24hr period. This to be replicated at home.
                              Thanks Linda xxx

                              Comment


                                #75
                                Originally posted by Music man's wife View Post
                                I just hope some people can sleep at night.
                                I just hope they cannot... 🀭🀭 😘
                                ​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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