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

  1. #11
    Forum Member Terry's Avatar
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    Hi Wendy;

    It would appear that he has not been banned as his account still seems active. I'm waiting for more facts and a reply from the Mnda tomorrow.

    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.

  2. #12
    WendyWooG
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    Thanks Terry, much appreciated update. It will be nice when the mnd chime in with some reassurance.

  3. #13
    Forum Member Barry52's Avatar
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    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
    Iím going to do this even if it kills me!

  4. #14
    Forum Administrator Admin_MND's Avatar
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    Hello All,

    At this point in time no one has had their access removed from the forum, however we have been reminding forum users of the terms of use that were agreed to upon registration for this forum, specifically that defamatory remarks are not allowed. There have been a number of instances of defamatory posts together with the use of inappropriate language to forum moderators. Whilst no one has had their access removed from the forum, we cannot allow repeated breaking of the forum rules. Such action may result in any user having their access temporarily or permanently removed from the forum.

    With regards the specific points that Graham has raised, in line with the forum rules we don't comment on the care and communication with individuals whether or not that person has chosen to do so in the public domain. We have provided an alternative option for Graham to contact us to further discuss any issues he has so that we can provide relevant support. We would remind all users that the forum should be used for open discussion and that private or confidential information should not be shared.

    Regards,
    Forum Administrator

  5. #15
    Forum Member
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    Hello Forum Administrator,

    It is good to hear that no one has had their access removed from the forum.

    You refer to the forum rules and I expect that I agreed to these when I registered last year, but as with a lot of small print probably just ticked that I had read and accepted them without actually reading then. So I was prompted to have a look at them and see what the situation was, now there is a tab "Terms of Service" at the bottom of this page but when I clicked on it an error message came up saying "404 Page not Found." Not to be deterred I searched for the Site Map on the home page and then under Website Policies found a link to Forum Rules and there were the terms that I agreed to when I signed up.

    Reading through them they seemed quote reasonable enough and there was clause relating to not compromising another's privacy.

    For anyone who is interested the Forum Rules can be accessed from clause 3.1 of the Website Policies.

    http://www.mndassociation.org/home/website-policies/

    Now I know that this all sounds a bit convoluted really and my point is that it would make more sense to provide a direct link from the forums webpages directly to the Forum Rules rather than the current link to non existent Terms of Service.

    Now don't get me wrong I'm not critical of what is undoubtably a very well organised website which is so helpful to so many of us, but truth is that I have reached a stage in my illness where I am spending a disproportionate amount of my time sitting in a reclining chair looking for things to divert myself. More on that later perhaps as sooner or later I suspect many of us reach a watershed with mobility and become confined to a bed/chair/wheelchair, and wonder how to remain cheerful in the face of it.

    Best wishes,

    John
    Last edited by John14; 30th August 2016 at 13:01. Reason: tidying up and getting link to work

  6. #16
    Forum Administrator Admin_MND's Avatar
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    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

  7. #17
    john
    Guest
    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

  8. #18
    Forum Member Terry's Avatar
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    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.

  9. #19
    Kernowcluck
    Guest
    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

  10. #20
    john
    Guest
    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

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