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Urgent Alert- Gentleman with MND at Risk

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    Urgent Alert- Gentleman with MND at Risk

    Dear MND Connect,

    There is evidence that a gentleman with MND is at risk. Please investigate the beneficiary of the MNDA referred to in 'Getting worried' and please reassure this forum that the gentleman in question has adequate safeguarding.

    Regards

    Graham
    Copyright Graham

    #2
    Hi Graham;

    It appears that the Mnda can't act unless the person themselves ask them. I PM them a few weeks ago about another mater of concern as I thought the younger carer needed support and they said that. That is what I was referring to with some of my ramblings on one of your threads.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

    Comment


      #3
      Dear Graham,
      Thank you for contacting us regarding the thread entitled "Getting worried". As an Association there are clear guidelines on the amount of information we can disclose in relation to our care and communication with third parties. As a result of this we are unable to contact the forum member concerned without her permission.

      If you are in contact with the forum member concerned, please do pass on the MND Connect helpline number - 0808 8026262. We would be very happy to talk to her concerning the matters she raised.

      Kind regards

      MND Connect

      Comment


        #4
        Who is Mnda connect???

        Thank you for replying Mnda connect, who ever you are.

        Who can I speak to about this as it seems weird that we/you can not contact us if we need help without us asking.

        Love Terry
        TB once said that "The forum is still the best source for friendship and information."

        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

        Comment


          #5
          Mnd connect
          Is there not some way there could be an option the register contact details with you when people join the forum. A simple contact details form with information only visible to the Mnda with an acknowledgement that we would be OK with you contacting us if other forum members became concerned? Surely this would not be too difficult to do?? If the form were not filled in or the contact permission not given it would then be understood that there is nothing you can do.
          The forum is like a big family, we worry about each other it would be so reassuring to have this facility. People in crisis aren't always thinking clearly and surely the Mnda is about helping!! I strongly urge you to please consider this as a future option for the forum.
          Thank you
          Wendy x

          Comment


            #6
            That is a good idea Wendy,

            You could have a opt in or better still opt out tick box.

            They have our emails, so I still don't quite understand why they can't email the person concerned once and offer assistance.

            Love Terry
            TB once said that "The forum is still the best source for friendship and information."

            It will only remain so if new people post and keep us updated on things that work or don't work and tips.

            Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

            Comment


              #7
              Originally posted by Terry View Post
              That is a good idea Wendy,

              You could have a opt in or better still opt out tick box.

              They have our emails, so I still don't quite understand why they can't email the person concerned once and offer assistance.

              Love Terry
              What happens I wonder to peoplr who have no voice and can't phone MND Connect. x

              Comment


                #8
                Dear MNDA,

                The MNDA's refusal to assist a vulnerable adult with MND who is clearly at risk is noted.

                This charity receives donations to protect people with MND and as the charity has salaried Directors, the charity has a DUTY OF CARE to its members. This charity is in breach of its DUTY OF CARE.

                The gentleman in question is assumed to be bedridden, unable to talk, suffering dementia and in no fit state to contact anyone. He is solely in the care of a loving wife who cannot cope and is suffering a breakdown herself.

                Clearly a local Association Visitor is able to visit the gentleman in question and report to the local authority and local NHS. Please inform the MNDA forum by Friday that this will happen.


                Regards

                Graham
                Copyright Graham

                Comment


                  #9
                  Hi GranneAnnie;

                  I have contacted them using email, sending them a PM and posting on their thread, whilst using speech by phone is far the best way as you know that they have the info. They, I think only work office hours.

                  Love Terry
                  TB once said that "The forum is still the best source for friendship and information."

                  It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                  Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                  Comment


                    #10
                    Originally posted by Terry View Post
                    Hi GranneAnnie;

                    I have contacted them using email, sending them a PM and posting on their thread, whilst using speech by phone is far the best way as you know that they have the info. They, I think only work office hours.

                    Love Terry
                    Thanks for that Terry. I think email would suit me best. Love Ann x

                    Comment


                      #11
                      Hello All,

                      Our MND Connect team will be contacting the forum member concerned to see if they would like any further support and advice from us.
                      Our working hours are Monday to Friday 8:30am until 5pm

                      Comment


                        #12
                        It does seem logical Mnda connect,

                        Can you also try to contact that other lady whose dad had Mnd, she was in a terrible state and I did email you at the time when she needed help. I think that she is a bit isolated and it would be good to try to offer help even though her dad has gone.

                        Love Terry
                        TB once said that "The forum is still the best source for friendship and information."

                        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                        Comment


                          #13
                          Thank you Admin-MND

                          Please could you raise the issue of the connect contact register and give us a report back as well please, as to whether or not it's feasible etc. It may not be the right thing for everyone and making it a matter of choice would solve the problem of unwanted contact. It might however be reassuring for a number of members.

                          Thanks again

                          Wendy X

                          Comment


                            #14
                            I don't understand the earlier response from MND connect they are unable to contact the forum member in question. It's not like there is a breach of confidentiality as it is an open forum. Surely it is better to contact someone potentially in trouble and be rebuffed than not to contact them at all. I find it really difficult to ask for help and they may be the same and if you don't know what help is available how do you know what do I ask for? If forum members are sufficiently concerned to flag up these individual cases then the baton should be taken up by MND connect who are in a better position to at least signpost these people in distress if they should so want it help or advice. It shouldn't be a matter of arguing over whose responsibility it is - just a matter of showing care and compassion to someone else in trouble. I'm glad Admin MND gave a positive response - policies can obviously be rewritten very quickly!

                            Comment


                              #15
                              Hi Kernowcluck;

                              I think that you have hit the nail on it's head, many people don't like or won't ask for help, for whatever reason. All am asking is that they make every effort to contact the person posting and try to offer help and see what is possible.

                              Graham, I don't think that they can report cases straight from the forum posts but after further investigations by contacting the person posting, this could be an outcome.

                              Mnda Connect, cut out some of the RED Tape and hiding behind closed doors. We are all here to help others, don't look for reasons not to do that to our best ability.

                              Love Terry
                              TB once said that "The forum is still the best source for friendship and information."

                              It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                              Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                              Comment

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