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

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  • Kernowcluck
    Guest replied
    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.

    Leave a comment:

  • Guest
    Guest

  • john
    Guest replied
    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

    Leave a comment:

  • Graham
    Forum Member

  • Graham
    replied
    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

    Leave a comment:

  • Guest
    Guest

  • Night walker
    Guest replied
    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

    Leave a comment:

  • Barry52
    Forum Member

  • Barry52
    replied
    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

    Leave a comment:

  • Guest
    Guest

  • john
    Guest replied
    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

    Leave a comment:

  • Guest
    Guest

  • Kernowcluck
    Guest replied
    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

    Leave a comment:

  • Terry
    Forum Member

  • Terry
    replied
    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

    Leave a comment:

  • Guest
    Guest

  • john
    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".

    John

    Leave a comment:

  • Admin_MND
    Forum Administrator

  • Admin_MND
    replied
    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

    Leave a comment:

  • John14
    Forum Member

  • John14
    replied
    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
    John14
    Forum Member
    Last edited by John14; 30 August 2016, 14:01. Reason: tidying up and getting link to work

    Leave a comment:

  • Admin_MND
    Forum Administrator

  • Admin_MND
    replied
    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

    Leave a comment:

  • Barry52
    Forum Member

  • Barry52
    replied
    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

    Leave a comment:

  • Guest
    Guest

  • WendyWooG
    Guest replied
    Thanks Terry, much appreciated update. It will be nice when the mnd chime in with some reassurance.

    Leave a comment:

  • Terry
    Forum Member

  • Terry
    replied
    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

    Leave a comment:

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