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    Could you be a peer support volunteer?

    We are jointly funding a project with Marie Curie to support Kings College in creating a network of peer support volunteers. These volunteers will provide peer support for carers of people with late stage MND (using NIV/PEG feeding). Kings College will undertake research into the effectiveness and impacts to carers that such peer support provides.

    The ideal candidate to become a peer support volunteer is someone with lived experience of caring for someone with MND.

    What will peer supporters do?
    • Communicate directly with carers on a weekly basis, using an app (similar to Whatsapp but more secure) to provide support for the issues faced by carers of people affected by MND
    • Build up knowledge of the resources and support available for carers
    • Help to signpost family carers of people affected by MND to available resources and services
    • Participate in the weekly online forums providing carers with an opportunity to discuss their issues
    • Explain to carers how the MND Association can support them.

    What commitment is required?
    • The time required is flexible, but we expect Peer Supporters to commit to a minimum of 1.5-2 hours per week for 12 weeks. This includes one-on-one communication with family carers and participation in a weekly discussion forum. You will be able to continue with other volunteering activities alongside this role.
    • You will be linked to a family carer for a 12 week period. Some people may feel like they can support more than one carer at a time. You can discuss this with the research team. After the first 12 week period, we hope you would be interested in supporting another family carer for another 12 week period. The research team will discuss this with you.

    Sign up process and training
    • If you are interested in learning more about being a peer supporter in this research study, please email Ella Terblanche or Thilipan Thaventhiran, who are research officer at King College London, [email protected] or [email protected].
    • One of their friendly research team will give you call to explain more about the role. If you are suitable for the role and think you would like to be involved, the research team will provide you training on the app and on peer support, so you are confident to be a peer supporter.

    What training will I receive?
    • They will provide you with one-on-one training (via Zoom) on how to use the ‘aTouchAway’ app to send text messages and make audio or video calls. We will schedule this training at a time that suits you.
    • They will also provide you with three one-hour virtual group training sessions on peer support with other peer supporters. Sessions will include topics such as building relationships, boundary settings, looking after yourself as a peer supporter, and managing risk, distress, and disclosures.
    • They will also provide you with a Peer Supporter manual. The research team will also be available via email Mon-Fri 9am to 5pm to help you if you have any concerns of issues while you are a peer supporter.
    Our working hours are Monday to Friday 8:30am until 5pm

    #2
    No because anything I'd suggest I'd be arrested for. Sorry I have a terrible sense of humour.

    Usually we private message each other, I'd be happy with that.

    Sorry but things really are difficult at the moment. I'm being very negative.
    when i can think of something profound i will update this.

    Comment


      #3
      It is a joke Denise.

      All spin and PR.

      You are doing a grand job for Stephen. There will be outbursts, just ignore them. We have to rely on ourselves if we want to survive.

      Love and cuddles xxxx
      Copyright Graham

      Comment


        #4
        Thank you for your love and cuddles. Stupid really Graham I'm sitting here crying. Why do kind words do this to me?

        Love and cuddles back and please dont stop. 😘
        when i can think of something profound i will update this.

        Comment


          #5
          denise


          HUgs

          I will dm/email

          Cumbria and Plymouth a bit far away to meet for a coffee and cry


          Donna

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

          Comment


            #6
            Hi Donna.
            thanks for the hugs just make sure you kick some arses on Monday.
            Coffee would be great.
            Xx
            when i can think of something profound i will update this.

            Comment


              #7
              It's just stress Denise. It is good to have a release from time to time and cry.

              There is the 'phoney war' part of MND but you are well past that stage and need professional help which is proving to be difficult to get.

              Hopefully the cavalry will arrive soon.

              Lots of love xxxx
              Copyright Graham

              Comment


                #8
                I know it's just help usually is someone pointing me in the right direction. What does that even mean? I look up all the information I can find, digest it then ask professionals who then don't know as much as me or state well everyones Mnd or FTD is different. Ok back to where I started.
                when i can think of something profound i will update this.

                Comment


                  #9
                  It is blummin awful Denise, I know. Awful, awful, then awful.

                  All I can think is it is best to have a cry or hysterical laugh and then carry on.

                  People are doing very nicely "supporting" us, and it really gets me in the stomach.

                  Anyway, onto the next.

                  Love and cuddles xxxx
                  Copyright Graham

                  Comment


                    #10
                    Graham that is exactly what I do.

                    Apparently the situation I am in is all my fault. I don't use carers because I don't need them. But I should have them because like loo roll they could become rare but I don't see the point in hoarding what I don't need. I complain my sitting service arrives even though I've repeatedly told them to cancel, then the tell me to pay for it. Then I'm told I should welcome sitting service and go read a book or something. But I don't want to and I don't want someone in my home I haven't asked for.

                    Stephen will stop doing what he does if I repeatedly tell him why he shouldn't and if I repeatedly tell him that a stranger isnt who he thinks they are. This doesn't work because hes forgotten what I've said not long after I've said it. My mental health is obviously not important. But I can phone countless people who will give me countless useless advice. Just makes me think if we ever see anyone it will be the same.

                    I'm complaining again 😳
                    when i can think of something profound i will update this.

                    Comment


                      #11
                      Keep complaining! It's good!

                      It's weekend again...

                      https://www.youtube.com/watch?v=Od6hY_50Dh0

                      Love and cuddles xxxx
                      Copyright Graham

                      Comment

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