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

  1. #1
    Forum Member Terry's Avatar
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    Is Graham been banned from the Forum and all his posts removed

    Can you please explain the position as I feel that it is wrong to isolate someone living alone with Mnd.

    I can understand modifying and even on extreme cases deleting one post.

    Graham, I don't always agree with you but I'm here for you, just like a loyal dog.

    Love Terry

    PS:- I can see that some of your posts remain Graham
    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. #2
    Forum Member WendyWooG's Avatar
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    I was wondering the same thing Terry, glad you have raised the question. Graham is tireless in his defence of others and has a right to be heard and be part of this forum.
    Wendy X

  3. #3
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    We hope to hear from you Graham so we know you are ok.

    CCxox
    .

  4. #4
    Forum Member Terry's Avatar
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    Hi All;

    I got an email from Graham that made me start this thread. It appears that he still has over a 1000 post remaining. It would appear that he has not been banned as his account still seems active, so maybe I have started this thread wrongly.

    I will leave it on here and hopefully we will get some facts etc.

    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.

  5. #5
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    Good to know he is ok Terry.

    Also good you started it, it's always better to be safe then sorry when there are concerns for another forum member.

    xox
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  6. #6
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    I'm an avid follower, don't always agree mind you but sometimes you need a grain of sand in the corporate oyster it's what brings forth pearls!

  7. #7
    Forum Member john's Avatar
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    Hi mnda. We have all watched and experienced Graham's problems when hospitalised and I rang the police on one occasion when he was pleading for help. Despite seeking your help to get him home and an independent life he struggled, in the first place to get out of hospital and secondly to get his independent payments plan and a personal assistant in place. He seemingly now is where he wanted to be. When you start telling the forum how nice life in hospital will be now that a document from "nice " is in place and Graham asks you to defend your behaviour when he needed help you refuse to do so you surely cannot be so stupid that you cannot see that the rest of the forum would very much like to hear you defend your actions or apparent lack of actions or are you?
    You either did everything you could to support him or as Graham says you left him to his life of abuse. Your silence suggests Graham is correct in his assertions. If your only defence is to silence him by removing his posts on the subject then I suspect that reinforces all our views that you failed him at a time when he most needed you.
    It may have been that at the time you felt Graham was acting unreasonably and he may well have been but given the dire circumstances he found himself having to live with an incurable , progressive and ultimately terminal illness is that not surprising?
    Given that Graham is willing to wave his anonymity in relation to this particular topic there appears to be no reason on earth why you do not share exactly what you did to try and improve his situation . If you are unable to offer any explanation for your apparent impotence in relation to rescuing Graham from his abusers then possibly it is time to acknowledge that and give Graham a public apology for your ineptitude and tell us what lessons have been learnt from the experience and what steps have been taken to avoid a repetition.
    If your enquiries resulted in your coming to the conclusion that Graham experienced none of the abuse which he alleges perhaps you could tell us how you arrived at the conclusion that he was lying and all his alleged abusers were not.
    It would be foolish of you to believe that this is not important to the forum and that simply removing all posts will be adequate defence. It is time for you to face up to the situation and either admit that Graham is right or prove to this community that he is wrong.

    John

  8. #8
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    Hello MND
    I too am supportive of Graham in his request to address the steps taken by the MND charity for his particular case involving the Salford hospital which I believe to be the main topic of his communications to the MND board. I was also very concerned about Graham at the time he was in hospital and also asked the MND to intervene and offer him assistance. I could not confirm I know if that assistance was forthcoming or adequate. I am also quite concerned about the NICE document you are endorsing saying how nice hospital life would be as I know first hand the lottery situation of each area health authority on the differing standards you can expect. What people who have MND and carers alike need is consistency and a level of care and support that is currently missing. All I see on this forum is people needing help, needing practical support, waiting for disability benefits, scared half out of their wits waiting and begging for appointments for breathing machines, changes to support them living at home and for many the appalling standard of care in the home that they have to pay out for.

    The NICE quality standard is a guideline, it does not mandate every health authority will do as it states and you do know that, so to crow about it without actually saying how you plan to augment that into the NHS care and standards in a practical and measured standard is like saying the lottery will make you rich. Very few will benefit from the NICE standards and you know it.

    Please support the 5000 who will be diagnosed with this disease in the next year better and think about what it is they need so that this charity can be a better charity for its patrons, it's time to stand up and be counted. Please respond to Graham, he deserves an explanation and the fact he wants that in the public space is his Individual freedom of rights.

    Best regards
    Sylvia aka NightWalker

  9. #9
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    I received an email from Graham yesterday stating that he has been banned feom the forum and that his posts from the last five years have been deleted. I have read his lengthy compilation and reports mainly appertaining to his long stay in Salford hospital. I have absolutely no reason to believe that these are not a true reflection of his treatment at the time but if only half of his allegationsq were to be true it would still present as a pretty horrific story. I have over 30 years experience of nursing every condition including MND and I am truly shocked to hear of Graham's experiences. If any staff have behaved in that manner on my ward on my ward I would have made darned sure that they didn't come back the next day. There may well have been personality conflicts but that should never lead to poor care or in some instances no care.

    For those of you who don't know, and I'm sure Graham won't mind me saying this, Graham was denied the very basics in care and because he was frightened and vulnerable he also suffered psychological abuse. Obviously none of us were there to witness it but Graham has been very open and has meticulously documented his grievances . Having read these there appears to have been a blanket to cover up where none of the issues were even recognised never mind resolved. It would be very interesting to read the hospital documentation from the time. If Graham has been a patient of mine I would have expected the following to be in place;

    Care plans for the following;

    Communication
    Mobility
    Moving and handling
    Pressure sore prevention/ skin integrity
    Continence
    Maintaining personal hygiene
    Nutrition
    Fluid balance/elimination
    Facilitating privacy and dignity

    Others as appropriate may include this swallowing, exercise/physio, wound management et cetera. Ideally there should also have been a ."bundle plan" ,which is assessed daily according to need, to provide evidence that the basics of care have been met regularly throughout the day for example; repositioning in the bed, assessing pressure areas, offering drinks, offering toilet facilities and generally observing the well-being of the patient. That is the minimum standard of care that I would expect to be provided on the ward I worked on. If the MNDA did indeed investigate grahams grievances what form did the investigation take and were these standards found to have been met. It would appear that from grahams evidence that none of the above were met. It would have been very easy to have accessed the nursing documentation and, on the basis of lack of documentation equals lack of care, action should have been taken.

    It is absolutely vital that the MND community have confidence in the Association that it will act as advocates in our times of need. At the moment there is little evidence of this and if the support shown to Graham is anything to go by I think we all have a right to be concerned. I look forward to response from the MNDA and I would expect honest answers rather than platitudes.

    I can only imagine Graham's feelings of fear and isolation that lead him to attempt to take his own life. Desperate measures indeed and I feel that someone should be ultimately be held accountable.

  10. #10
    Forum Member WendyWooG's Avatar
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    It is not in any way acceptable for Graham to be banned from the forum. He has a right to be heard. Isolating him from his support network here is inexcusable. The mnd association should not be making his situation worse, banning him from his contact here is making his situation worse.

    I don't know what happened in the past I am purely concerned with Graham's current situation now and I would like some reassurance from the mnd that Graham will be able to be part of this group if he wishes to.

    I understand the need for moderation and the necessity of a structure and rules within the forum, however these should be applied with understanding and compassion when dealing with someone who has had an extremely traumatic and difficult journey with this illness. He needs all the companionship and support possible. Please reconsider this situation.

    Wendy X

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