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  • Guest's Avatar
    Guest replied
    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.

    Wendy

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  • Terry
    replied
    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

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  • Guest's Avatar
    Guest replied
    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.

    Wendy

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  • Terry
    replied
    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

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  • Guest's Avatar
    Guest replied
    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.

    xox

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  • Terry
    replied
    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.

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  • Graham
    replied
    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

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  • Graham
    replied
    +++ 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


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

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  • Admin_MND
    replied
    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.

    Regards,
    Forum administrator

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  • Guest's Avatar
    Guest replied
    "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.

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

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  • Graham
    replied
    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

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  • Graham
    replied
    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

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  • Graham
    replied
    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

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  • Graham
    replied
    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

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  • Graham
    replied
    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

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