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    #16
    Hi John

    Thank you for pointing out the error with the link, this has now been corrected.

    We appreciate you bringing it to our attention.

    Kind regards,
    Forum Moderator
    Our working hours are Monday to Friday 8:30am until 5pm

    Comment


      #17
      Defamatory remarks according to the dictionary are false or unjust remarks. Perhaps you would care to explain which remarks are false or unjust or perhaps your interpretation of the rule is simply that you have the right to silence anyone who criticises the association whether their criticism is false or unjust or not?
      If that is the case it seems you ought to clarify your rule with a word other than "defamatory".

      John

      Comment


        #18
        I must admit, that silence looks like guilt or covering up, Admin Mnda Moderator;

        An openness is so much better. Having involvement with his hospital stay and with speaking to the chair of the Mnda at that time, I felt a reluctance to get involved and thing that you could have done so much better.

        It would be nice to know that lessons have been learnt and that you would try and get involved earlier and to a much greater extent.

        I have no doubt that Graham rights were abused whilst in hospital.

        Regards 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


          #19
          MNDA website policy 2.2 States that
          " the MNDA maintains the website to provide information and support to its members and supporters".

          Yet when we identify a particular area where support is needed the only response we seem to get is quoting from the rules. I cannot see how any rule has been broken and any information highlightedin this particular case cannot be classed as confidential if the poster has openly discussed issues and asked for help. The parable of the good Samaritan springs to mind and although it would be much easier to pass on the other side of the road it is commendable That the forumfamily have the guts and integrity to question why this particular member i.e. Graham appears to have had a rotten deal. I don't expect MND a to discuss this case over the forum but I do think they should ask themselves whether they did enough for Graham at the time . If the answer is yes it is clear that they have no teeth and are unable to influence care systems and providers because the result was disastrous for Graham,and if they say no I think we would all like to know why this is and how we would stand in a similar situation.

          I have no doubt that many people have benefited financially from funding via MNDA. I have myself and was very grateful.however I would imagine that the majority of us need support in other areas. For example as I have said before I am now in my 11th monthfighting for a wet room partially funded by myself and by a DFG. After being unable to access washing and toilet facilities for nearly a year I contacted MND a in desperation hoping that they could speak to the council and maybe speed things up a bit. I was told this was not part of their job and although they agreed that this was unacceptable they were unable to help me. The timely provision of facilities is highlighted in the NICE guidelines and already the MNDA are unable to support implementation.

          There are now so many questions that have yet to be answered and it appears that the expectations of the forum members far exceeds the ability of the Association to fight our corner with us. So many of us are battling on on our own with the horrendous problems that MND brings, we are weary of bashing our heads against a brick wall and need a strong association that we can rely on and that can be honest and open and empathetic to our needs. None of us want to hear of another case like grahams, that should never ever have happened but
          I have no reason to believe that lessons were learnt.

          An encouraging piece of news is that the Royal College of nursing has launched an online resource for the multidisciplinary teams caring for patients with MND . mnd.rcnlearning.org.uk

          Comment


            #20
            Seems strange that the mnda refuse to enter into any sort of dialogue now it is apparent that bullying threats do not bring about silence. Your last post Kernowcluck merely asks about policy and how they are intending they will reinforce the nice guidelines if they are not been properly implemented by the institutions in the health industry. Does not require any breach of confidential data just a simple statement to reassure those on here who may face a stay in one of these establishments.
            It would appear they are more interested in everything being nice and quiet and them sitting around in committee rooms drawing up blueprints for eutopia than getting to grips with the day to day problems which mnd sufferers encounter or helping them to get timely aid when it is needed be it from the NHS or local authorities.

            John

            Comment


              #21
              Originally posted by Barry52 View Post
              Hello MNDA,

              Like many of us living with MND and our carers we support Graham in his rights to be treated fairly and with dignity. It would appear from his detailed notes that this has not been the case historically and currently. We are all frightened of what may happen as the disease progresses and should we be taken into to hospital or care we should not have the additional worry of bullying or abuse that Graham alleged he endured. If we call on the charity that represents us for help then that help should be forthcoming.

              I have no doubt that following the bank holiday weekend the directors and trustees of MNDA will all be in a huddle thinking of how do we make this go away, just like bad news in politics, but please, I urge you to remember the CHARTER and give us a reply that encourages my fellow forum members. We don't want to hear that the N.I.C.E. guidelines will make a difference.

              As we and our family and friends raise a lot of funds for MNDA please restore our confidence that we are actually fighting for something worthwhile.

              Regards
              Barry
              Whilst many of us have lost the power of speech it appears MNDA are practicing silence speaks.

              Barry
              I’m going to do this even if it kills me!

              Comment


                #22
                Hello all,
                Has anyone heard from Graham? I am hoping he knows he is not banned from here and I'd hate to think he was feeling he has been left out on his own. He's got so many friends on here all willing to help and just hope he knows that.
                Take care
                Sylvia

                Comment


                  #23
                  Hello Friends,

                  I am able to post and my posts on the Research Area, that represent hundreds of hours of work for me, have reappeared.

                  I too note that the MNDA have not entered into discussion or answered any questions, other than to quote confidentiality rules. MNDA Director, Mr Chris James, has nevertheless commented that we must realise that our care must be cost effective. I can only assume that the Salford Hospital management team told the MNDA that my care was cost effective in line with the NICE guidelines on MND and were content to leave it at that.

                  I am in communication with the MNDA Chairman of the Board Trustees and I have to write a formal letter that I will share with you all.

                  I read of Davetherave's four year battle with his NHS CHC funding and it is a battle that we all must face up to and realise that our charity refuses to help us. I am also aware of people having their life savings and homes taken from them to fund appalling care provided by care agencies.

                  I am still of the mind that the entire care management team of our charity should stop down with certain members of the Board of Trustees.


                  Regards

                  Graham
                  Copyright Graham

                  Comment


                    #24
                    Hi Graham,
                    I think davetherave was chasing the award retrospectively for a relative, not for himself but I am sure there have been plenty of instances when it should have been given to mnd sufferers and wasn't. Whilst everyone's illness seems to progress at a different rate the outcome for all but Stephen Hawking is the same. CHC should be awarded on compassionate grounds to all mnd patients, it shouldn't be left to individuals to do battle with their NHS . Again it is something that a lobby group acting on behalf of all should be able to convince government to put in place. The disease itself is fairly low cost for the NHS with very little need for hospitalisation and no real treatment to offer at any expense unlike say cancer with chemotherapy, radiotherapy and surgery options. The NHS claim to manage symptoms but time and time again people are seeking control for secretions of mucus and phlegm but few effective remedies exist. Why not after all this time? Likewise speech aids and wheelchairs, shouldn't an effective lobby group again be able to ensure the timely provision of these by all local NHS facilities, it really shouldn't be left to individual authorities to procrastinate in the hope that the patient dies before the expense has to be incurred. I do feel enough vigour does not go into this on the part of the mnda but I am happy for them to give examples which prove me wrong.

                    John

                    Comment


                      #25
                      Hi Graham, good to hear from you again. Very valid points that John makes about the costs of MND and that our costs seem to be incurred more in equipment and care rather than expensive medications. And when you think about it equipment can usually be reused so much of the cost is only in the initial outlay. When my partner died of lung cancer he had had two years of expensive chemotherapy including a double-blind trial drug trial but needed very little else. What struck me was the level of support he received from Macmillan and a whole raft of specialist professionals. His treatment could not have been classed as cost-effective but what price can you put on life?

                      I don't think it's unreasonable to expect the MNDA to pro actively support us to assist us to achieve as good a quality of life as possible in our circumstances and to be there with us from the point of diagnosis. They should be our lobby group. If they are unable to give us this support can they sign post us elsewhere for help because as far as I know there is nothing else for us out there. In this area my GP knows nothing about the condition neither does my community matron and we have no MND specialist nurse within the county.

                      Perhaps the Association could clarify what their duty towards members is so we can understand what to expect.

                      Comment


                        #26
                        15th August 2016

                        Private message from MNDA_Admin to Graham


                        Dear Graham,

                        You will see that we have again removed the name of the hospital from your post on the 12th August 2016 at 00:31. This content is in breach of paragraph 8.4.1 of our forum rules and privacy policy (Contributions must not contain any material which is defamatory...)

                        We also state in paragraph 9.1 of the forum rules and privacy policy; We have the right, but no obligation, to remove, edit, move or remove any content of any kind for any reason.

                        The policy is in place to ensure we can continue to provide a safe and open environment, and so it is important that all members agree to use the forum in line with these terms. Our policy states ‘By using the Forum, you agree to these Rules. If you do not agree, please stop using the Forum’.

                        Kind regards
                        Forum Moderator
                        Copyright Graham

                        Comment


                          #27
                          22nd August 2016

                          Private message from MNDA_Admin to Graham

                          1. Moderated Post 22/8/16
                          Dear Graham,

                          After consideration we have removed your recent post from the forum, dated 21st August at 17:44pm. This is because it is defamatory in nature and contravenes our forum rules.

                          We welcome conversation around the NICE guideline and invite you and other members of the forum to share your views, however we cannot allow posts that name individuals and organisations in a defamatory way.

                          We hope you can continue to contribute to the discussion in line with this policy.

                          Kind regards,
                          Forum Administrator
                          Copyright Graham

                          Comment


                            #28
                            24th August 2016

                            Private message from MNDA_Admin to Graham

                            1. Removal of threads
                            Dear Graham,

                            We contacted you earlier this week to advise you that we are taking down one of your posts which was defamatory. Specifically it named individuals, and also included statements which seek to damage their reputation and that of the Association, both of which contravene the rules and privacy policy of the forum.

                            Subsequent to this, you have amended many of your previous posts to repeat the offending post, some of which were part of a wider conversation where we are sure your original contribution was of value to other members involved. Unfortunately these will also be removed.

                            I must bring to your attention contact that we have received from other users who have expressed reluctance to post on the forum for fear of their posts being misinterpreted and used for other means, with specific reference to some of your previous posts.

                            It is our priority that all users feel safe and supported, and that we provide a welcoming and non-confrontational environment. We value your presence on the forum however if you continue to disregard the rules and privacy policy, we will have no choice but to revoke your access.

                            We truly hope that the situation does not escalate in this way. We appreciate that you have concerns around our past and present actions, and if you would like to discuss these further we can arrange for someone to get in touch with you. Your contribution to the discussions on the forum is of value to us and your fellow forum members, and we hope that we can move forward in a way that is constructive and mutually-respectful.

                            Kind regards,
                            Forum Administrator
                            Copyright Graham

                            Comment


                              #29
                              26th August 2016

                              Private message from MNDA_Admin to Graham

                              1. Removal of recent posts
                              Dear Graham,

                              We recently advised via private message that one of your posts breached our forum rules. Subsequently, you repeated the same forum post by editing many of your previous forum contributions to repeat the offending post.

                              At this point, we advised you that although we didn’t want the situation to escalate, we would revoke your access to the forum if breaches to our forum policy continued.

                              Following this warning, you have continued to post the same message in many more places across the forum.

                              All users when signing up to the forum agree to the forum rules and privacy policy, specifically that contributions must not:
                              8.4.1 Contain any material which is defamatory, libellous, obscene, offensive, vulgar, sexually orientated, hateful or inflammatory.

                              It is our priority that the forum is a safe and supportive environment. Accordingly the forum is not a suitable channel for discussing specific events or sharing personal information in a way that causes distress to other forum users (and as per our previous message, other forum users have been in contact with us to express their concerns about the nature of some of your forum posts).

                              We appreciate that the issues you raise are important, however a better way to address personal concerns would be to contact someone directly and Alun Owen, Chair of the board of Trustees has extended an invitation to email him ([email protected]) should you wish to discuss any issues further.

                              At this point, we have not revoked your access to the forum, however we will do so if there is a further breach and to regain access you would need to confirm that you are willing to use the forum in line with the rules and privacy policy.

                              I would like to reiterate our desire to maintain a respectful relationship in which you can continue to use the forum in a constructive way and therefore remain part of the forum community.

                              Kind regards
                              Forum administrator
                              Copyright Graham

                              Comment


                                #30
                                4th September 2016



                                Mr Alun Owen
                                MNDA Chairman of the Board of Trustees
                                Motor Neurone Disease Association,
                                David Niven House,
                                10-15, Notre Dame Mews,
                                Northampton.
                                NN1 2PR


                                Email: [email protected]


                                COMPLAINT – MNDA FAILED MND SUFFERER GRAHAM

                                Dear Sir,

                                I note that you have failed to reply to my complaint of 18.06.16, MNDA FAILED MND SUFFERER JEANNIE, which is disappointing and reflects on the contempt to which the MNDA holds its members.

                                I use the MNDA forum to assist fellow MND sufferers and because I am totally isolated with no friends other than ‘virtual’ friends. I discuss ‘Life with MND’. My life with MND can only be described as woeful, with very many people and organisations taking advantage of my vulnerability. It is my fighting spirit that keeps me going. The MNDA have acted despicably against me and continue to act despicably against me showing no remorse.

                                I described my harrowing experience in Salford hospital and you have my transcript of events in that establishment including the MNDA’s refusal to assist in any way. As Chairman of the Board of Trustees of the MNDA, you should be deeply ashamed.

                                I have only described actual events truthfully on the MNDA forum. It will shame the MNDA further in suppressing the truth and banning a principled person educating fellow MND sufferers on life with MND.

                                I am now determined to take Civil Court action against the MNDA for breach of copyright should the MNDA not restore all of my truthful factual posts.



                                Yours faithfully,

                                Graham
                                Copyright Graham

                                Comment

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