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

[Terry]

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

[WendyWooG]

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

[ccinjersey]

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

CCxox

[Terry]

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

[ccinjersey]

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

[John14]

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!

[john]

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

[Night walker]

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

[Kernowcluck]

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.

[WendyWooG]

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

[Terry]

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

[WendyWooG]

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

[Barry52]

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

[Admin_MND]

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

[John14]

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