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Caring: tell us what matters to you

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    Caring: tell us what matters to you

    If you help care for a loved one living with MND we’d love to hear from you.

    The Association has launched a new project to look closely at the needs of unpaid carers.

    You may prefer to see yourself as a partner, relative or friend if you support someone with motor neurone disease (MND) or Kennedy's Disease rather than a ‘carer’. However, you may come across particular challenges to do with caring and we know the pandemic has made things more difficult.

    We want to find out what issues you face as an unpaid carer so we can better shape our support to help you. That might include changing the help we offer or campaigning on the issues that matter to you most.

    We’re asking people who currently help look after a loved one living with MND and provide unpaid care to share their thoughts, views and experiences with us by taking our online survey. We estimate the survey will take roughly 30 minutes to complete. However, you can save and return to your answers if you don’t have time to complete it in one go, and you can skip any sections of the survey that don’t feel relevant to you. The survey will close on 13th December.
    We know your time is precious so if you can’t complete the survey there are different ways to get involved, including contributing to a virtual focus group or having a one-to-one interview at a time convenient to you. We will be updating these opportunities on our webpage.

    If you have any questions in the meantime or want to find out more about getting involved and sharing your experiences, please email [email protected]

    Thank you in advance for any thoughts you are able to share
    Our working hours are Monday to Friday 8:30am until 5pm

    #2
    Is this just for UNPAID carers?
    Copyright Graham

    Comment


      #3
      I'm unpaid in that I haven't yet received o
      when i can think of something profound i will update this.

      Comment


        #4
        I haven't received a carers allowance even though I've claimed it, I guess it will turn up one day, and that will stop when my pension kicks in on 13th December so I gather once more I will be an unpaid carer.
        when i can think of something profound i will update this.

        Comment


          #5
          Hi denise and Graham,

          Yes the survey is for unpaid carers, meaning people who provide care on a voluntary basis as opposed to professional care staff. But we don’t count receipt of Carers Allowance in that- so yes we are interested in hearing from carers who receive Carers Allowance.

          Thanks very much,

          Forum Admin
          Our working hours are Monday to Friday 8:30am until 5pm

          Comment


            #6
            My kingdom for a full time carer. 😁🤗😋😍xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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              #7
              Originally posted by matthew55 View Post
              My kingdom for a full time carer. 😁🤗😋😍xx
              In your new place that 2nd bedroom can be for that carer👍🏻😉🙏
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                #8
                True but I'd like to keep it for visiting family and friends. 👨‍👩‍👦👍😁😍xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                Comment


                  #9
                  matthew55
                  some complexes have a guest room..Is your new home in a complex?
                  Mary

                  Comment


                    #10
                    I don't think it is 🤔😁😘😍xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                    Comment

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