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    #16
    Originally posted by shelly21 View Post
    Ellie it means in a residential setting. Basically his home.
    Oh, I didn't think "Residential Services" included private domestic homes - that's a bummer. x

    ​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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      #17
      When the CQC write 'In a residential setting' they mean in a residential care home or nursing care home. Not a person's own home in the community.
      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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        #18
        That's what I thought LindaB , thanks. 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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          #19
          As it stands they can mould the rules to suit themselves. Facism alive and well in healthcare. 😡🐧xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #20
            Not necessarily matthew55 ...the care agency will have a medicines policy...you can ask to see it. If you disagree with whatever that is you're free to say no....this is my preference blah blah. You do have power.
            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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              #21
              If I could ask them I would. Texts not answered and email doesn't work. 😡😁🤗😍xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                #22
                matthew55 maybe a social worker?
                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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                  #23
                  I don't know any x
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                    #24
                    Well I've been allocated a social worker from the hospice. If you have an e-mail address for your local hospice could you make contact?
                    I thinking as communication becomes difficult a social worker can act on your behalf...or an advocate. I'm sorry it's a struggle matthew55 to get these things sorted.

                    PS I suppose I'm biased as I'm a social worker 😂😂
                    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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                      #25
                      My local hospice has washed their hands of me. I'm not close enough to death for them. ☹️🐧😁🤗xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                        #26
                        That's bonkers matthew55 you're diagnosis alone is enough to justify their involvement. You don't have to be 'close' to death....it's about supporting you to be as well as possible for as long as possible.
                        ​​​​​I'm sorry you're being given the 'run around' Matthew seems like a post code lottery. 🙁

                        Could you e-mail mnda for support with this?
                        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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                          #27
                          I have asked my GP and my community neuro team. 🤔xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                            #28
                            Fingers crossed you get the support you need 😉😇
                            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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                              #29
                              We've got a social worker. No idea where he came from or where hes gone 🙄
                              when i can think of something profound i will update this.

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