No announcement yet.

Is Graham been banned from the Forum and all his posts removed

  • Filter
  • Time
  • Show
Clear All
new posts

    "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".

    If you are going to remove Graham's posts on the grounds that they are defamatory could you explain how they are false or unjust. It seems to me you seek to remove them on the grounds that they are embarrassing to the mnda and demonstrate your failure to support him at his time of greatest need.
    You have been asked to justify your abysmal failure to come to his aid and explain why you did nothing to stop the long term abuse he suffered at the hands of the * nurses but rather than come forward and provide answers you seek to remove the criticism. Shame on you. To say others are complaining about the content of this thread seems to be another attempt to shift responsibility. The answer to end all this is to reply carefully to each point . Say what you did or did not do and why you did or did not do it.
    Easy , problem goes away and we all move on. If you do this everybody is satisfied. If you fail to do this then everyone sees that you failed Graham when he needed you most and they will draw their own conclusions.
    You underestimate the magnitude of what you are attempting to sweep under the carpet here. Time to face up to what you have or haven't done and explain what you intend to do to ensure no other mnd patient has a similar experience in a uk hospital.

    Last edited by Admin_MND; 5 September 2016, 14:46. Reason: Breach of forum rules and privacy policy


      Dear all,

      We appreciate that there has been a delay in posting a response, however it was important that we take the necessary time to consider all of the issues raised.

      We know that some Forum members have been concerned to see that we have removed some content from the Forum recently and would like to explain why we have done that. The content in question was removed as it contained allegations about another Forum member who deemed them to be factually incorrect. The content therefore contradicted the forum rules and privacy policy which are there to protect everyone from the potential for harm.

      The forum exists to provide an open and supportive community for those living with or affected by MND. We welcome the feedback of our supporters and members, however there are alternative, more suitable channels to raise any concerns or issues about our work.

      With reference to Graham’s statements on the Forum, we can share that several members of staff and volunteers did their very best to support him within the boundaries of what we can do as a charity but sadly we have to acknowledge that we haven’t been able to meet his expectations of us.

      I am sure you will understand that we are not able to provide any more information as we cannot discuss the specific care details or any communications of a Forum member, irrespective of whether they choose to share this information on the forum or not. We would be breaching confidentiality should we disclose this information. The rules around confidentiality are set out in law and so are something which we take very seriously and have very firm rules about.

      Thank you Kernowcluck for highlighting the details of the online learning module, which we developed in partnership with the Royal College of Nursing. We have also recently launched details of another online learning module in partnership with the Royal College of GPs. Partnerships such as these are key to helping us influence service provision and we hope they will prove valuable as we work to support implementation of the NICE guideline.

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


      • +++ Received from MNDA +++

        Dear Graham

        Thank you for your email to Alun Owen of 29 August which I have fully discussed with him and he has asked me to reply.

        Firstly we have seen your posts from this weekend and have had to remove them as they are in breach of our forum poIicy. Although we have not removed your access if there is a further breach of the rules then we will have no alternative but to suspend your posting rights and in order to regain access you would need to confirm that you are willing to use the forum in line with the rules and privacy policy. Whilst we would welcome your continued presence on the forum, we need you, along with all Forum members, to abide by the policy which is there to protect everyone from the potential for harm.

        On the issue of the NICE guideline on MND, Sandra and the Association have posted a number of times on the forum to explain how we will use the guideline to maintain and improve services. Please be reassured that we have no intention of leaving it ‘dead in the water’. As an Association we campaigned over many years to get the guideline developed and we have every intention of making sure that it is used to drive up the standard of care for people with MND. We have already written out to all hospitals to ask them to confirm to us whether their services match up to the guideline standards. We will be following up where we believe there are problems.

        Sandra lost her husband to MND and is a passionate and successful campaigner for the rights of people living with the disease. As well as being a Trustee, she was part of the NICE guideline development group (one of three non health and social care professionals) and put a huge amount of work into the development of the guideline. She is working hard, including through presentations to local groups, to ensure the implementation of the guideline and to empower people with MND, their families and carers to use it to lobby for better services.

        You included in your email comment about your perception of a lack of support from the Association and attached a letter to the local ombudsman. We can confirm there was a visit by Steve Bell and Sandra Smith in 2013 as stated. However, both of their recollections of that visit are very different to that given by you. Steve recalls and has recorded that he personally raised many safeguarding and police alerts at your request. Steve also visited you at home in Feb 2015 along with the social worker. As far as we are aware, since your discharge, there has been no contact between our Care team and you through the Forum until the NICE guideline issue that arose recently. I would also like to add that, as you know, there is a process for NHS complaints which has been followed and which we aren't party to and we assume these have or will run their course. I can also confirm that all issues relating to the Association have been previously investigated by us and found to be unsubstantiated.

        Having reviewed what has happened previously we can only conclude that the Association’s staff members and trustees have tried hard to support you within the boundaries of what we can do as a charity but that sadly we have to accept that we haven't been able to meet your specific expectations.

        I don’t feel that there is anything further to be gained by extending this particular discussion but we would, of course, always be happy to be approached about any wider aspect of the Association’s work.

        Best wishes


        Chris James
        Director of External Affairs
        Motor Neurone Disease Association
        PO Box 246, Northampton, NN1 2PR, UK
        Tel: 01604611771
        Mobile: 07876574844
        [email protected]


        • Hi All,

          I will not be bullied into remaining quite on very important matters for people living with MND.

          Should anyone wish to contact me, please go through Terry.

          Over and out.

          Love Graham


            I guess that many of us must be seen as Rebels so not worthy of a direct answer.

            I was nicknamed a rebel in the fire service, I don't quite know why, but I would normally speak out if I thought something could be improved. So maybe I would criticize but in a positive way, in order to improve things.

            I guess the Mnda are backed into a corner and can't say much through fear of being taken to court.

            But I do hope that lessons have been learnt about Graham's experience's and they will act faster and more decisively when a Mnd person is forced to stay in hospital.

            I think that possibly Graham is not the easiest person to work with but probably some of this is due to the Mnd affecting his frontal lob area of his brain and sheer frustration of not being able to get much care. I don't know what went on there but I don't believe that Graham was lying. He was abused and his rights were taken away.

            Sorry, love Terry

            PS:- It is sad to lose his very educated input on the forum, I just hope he returns.
            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.


              Hi Terry, All

              In our hospitals we have patient advocates for every patient that gets admitted. Their role is to basically be the patients liaison between the patient, and hospital staff as well as hospital administration should the patient have issues, concerns, problems etc that need to be addressed, and may not be getting resolved to the patient's satisfaction.

              Maybe the mnda could create such positions, and send these advocates to the hospital whenever a person with mnd is admitted. They would act on behalf of the patient, and organization they represent . Since mnd has it's own unique needs that hospital personal may not be properly trained to understand their role would be to ensure protocols are in place and met by hospital staff as well to support the patient, and their family during the hospital stay.

              It could be a trained volunteer position or paid position if funding is available. This might help ensure a person with mnd going into the hospital would not have to experience the long term suffering, and indignities that Graham had endured.



                It appears that Graham has now been banned from the forum.

                I don't know why, I was just trying to find the Music thread that he started and it appears to have gone along with our posts.

                It is a shame that Graham could not remain here as he is a very educated man who has studied certain areas of Mnd.

                It is a real shame if we have lost his informative posts.

                Any comment from the Mnda?

                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.


                  Ahh that's such a shame, I was really hoping that things would calm down completely and he would come back. He hasn't been on much posting so it's hard to see why he would be banned and his old posts removed.



                    Hi all;

                    I email Graham recently and got an upbeat reply.

                    But he did ask me to post this on this thread:-

                    I do intend to take MNDA to Court.

                    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.


                      Thank you so much Terry for posting the update, it's nice that Graham is upbeat and still in fighting trim. It's hard when we lose contact, I miss Graham and Dude.