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Supporting people with MND in making decisions about having a gastrostomy feedingtube

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    Supporting people with MND in making decisions about having a gastrostomy feedingtube

    People with MND are asked to make multiple decisions about treatments throughout the course of the disease. One such choice is whether to have a gastrostomy feeding tube, a narrow plastic tube placed directly into the stomach, to allow nutrition to be given when unable to take enough by mouth (also known as a PEG, RIG or PIG). Research has found that people with MND find it difficult to make the decision to have a gastrostomy. MND care is delivered by nurses, doctors and therapists, working as a multi-disciplinary team (MDT). A person with MND can receive support in making decisions about gastrostomy placement from all of the MDT. The aim of this research is to explore how people with MND can be supported to make decisions about gastrostomy placement by the MND MDT.

    The researcher is currently looking for help to guide the design of the planned study through the formation of a patient and public involvement (PPI) group. This group will allow the researcher to collaborate with people with MND and their families who have experience of making decisions about gastrostomy feeding tube placement.

    What does being part of the PPI group involve?
    PPI group members would be asked to provide feedback on research documents such as lay summaries, research protocols, interpretation of research findings and how best to communicate the research findings to healthcare professionals and people with MND.
    Feedback can be provided via taking part in virtual group or one-to-one discussions (no requirement for travel) or by using written communication e.g. via email.
    There will be no more than 2 meetings per year and there is no expectation for every group member to attend every meeting. The meetings will be taking place over the next 3 years.
    Group members will be reimbursed for their help with designing the study and will be offered Β£25 per one hour meeting and Β£12.50 for providing feedback remotely on research documents.

    Who can be in the PPI group?
    • People living with MND: individuals with a confirmed diagnosis of MND who have experience of making the decision to have a gastrostomy placed
    • Family members or Carers of those with MND: any individual over 18 years, who looks after a family member, partner or friend with MND who has experience of making the decision to have a gastrostomy placed
    All members of the PPI group need to be living in the UK and be able to provide feedback in writing or via direct virtual one-to-one or group discussions. They also need to have experience of making the decision about having a gastrostomy feeding tube placed.

    How can I get involved?

    To be a part of this group, or to find out more about it, please email the lead researcher Sean White at [email protected] or call on 0114 2222295.
    Our working hours are Monday to Friday 8:30am until 5pm

    #2
    Email sent πŸ˜πŸ‘βœ”οΈxx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    Comment


      #3
      Originally posted by matthew55 View Post
      Email sent πŸ˜πŸ‘βœ”οΈxx
      Thanks Matthew
      Our working hours are Monday to Friday 8:30am until 5pm

      Comment


        #4
        Sean just emailed me back! πŸ˜€xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

        Comment


          #5
          That's bold Matt! Over 3 years!! Planning to be a MND warrior is good.
          Copyright Graham

          Comment


            #6
            Nothing ventured and it has the added bonus that more people might remember me when I'm gone. 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

            Comment


              #7
              Originally posted by matthew55 View Post
              ... more people might remember me when I'm gone.
              Oh Matthew, you'll be remembered for sure πŸ˜πŸ˜πŸ˜πŸ€—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.

              ​

              Comment


                #8
                But in a good way or bad? 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

                Comment


                  #9
                  I'll plead the 5th πŸ˜‰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.

                  ​

                  Comment


                    #10
                    You watch too much American stuff. We say No comment. 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

                    Comment


                      #11
                      Originally posted by matthew55 View Post
                      You watch too much American stuff.
                      That's all your fault.

                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      ​

                      Comment


                        #12
                        Guilty your honour 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

                        Comment


                          #13
                          After consideration, I am not doing the research but I want to point out my thoughts.

                          The NHS/MNDA did another study recently where the type of MND was supposed to influence decisions in our care. It is stomach churning that nothing ever seems to happen with the research. An utter waste of time and money.

                          So for real value: -

                          I decided not to have a PEG - and was the correct decision. Gene DCTN1 buggered. Diagnosis PPMS=>PLS=>ALS(UMN).
                          Copyright Graham

                          Comment


                            #14
                            To qualify that statement Graham it is the right choice for you. I have to say I have been wrong and am actually putting on weight with my PEG. Today I am back at 11stones. 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

                            Comment


                              #15
                              Clearly mouth is better than PEG for so many reasons but I got lucky when I decided not to PEG. Don't get me wrong, I have to be exceptionally careful and slow when eating and food gets stuck in my throat quite regularly that reappears at night. Not easy and dangerous but who says MND is easy?
                              Copyright Graham

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