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    Annoyed

    Consistently of care. Yesterday I heard a knock on my front door at 0715, as I was still in bed I did not answer. Today I got up at 0500 just in case, and so far nothing. The irony is that as I need more care I get less. 😑🀬🧐🀯xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Originally posted by matthew55 View Post
    Consistently of care. Yesterday I heard a knock on my front door at 0715, as I was still in bed I did not answer. Today I got up at 0500 just in case, and so far nothing. The irony is that as I need more care I get less. 😑🀬🧐🀯xx
    Don’t your carers have regular times?
    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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      #3
      That was my understanding
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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        #4
        Originally posted by matthew55 View Post
        Consistently of care. Yesterday I heard a knock on my front door at 0715, as I was still in bed I did not answer. Today I got up at 0500 just in case, and so far nothing. The irony is that as I need more care I get less. 😑🀬🧐🀯xx
        Would it help to have a key safe? Save you having to get up to answer the door to carers matthew55 πŸ€”
        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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          #5
          I have a key safe except it for age concern. Plus my recent carers couldn't find their own backside without help. 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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            #6
            Then why did the carer knock & not come in??
            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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              #7
              Hi Matthew, not sure what you mean that keysafe is for Age Uk..?
              If you inform the care agency providing carers they should pass keysafe number to carers to access your home.
              Hope they turned up this morning.
              Can you email the agency to say your care needs have increased and they should assess if the duration of the call needs increasing.
              Best wishes
              Mary

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                #8
                Firstly age concern will not give the number to anyone. Second there is no email address for the agency. I have 5 more days to wait for my meeting.
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                  #9
                  matthew55 you're entitled to give your key safe number to anyone you choose to. That includes the agency - that's the main reason for having it. Age Concern may have fitted the key safe however it's yours. Emergency services also need to be able to access or else they will break your door down.
                  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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                    #10
                    Originally posted by matthew55 View Post
                    Firstly age concern will not give the number to anyone. Second there is no email address for the agency. I have 5 more days to wait for my meeting.
                    All.agencies are registered with the Care Quality Commission...their details should be public knowledge...if.you can check online? πŸ‘πŸ»
                    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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                      #11
                      I've checked online and I have no idea what the code is.
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                        #12
                        Originally posted by matthew55 View Post
                        I've checked online and I have no idea what the code is.
                        Age Concern should have asked you what code you wanted when they fitted it...I guess they know? Crazy!!!
                        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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