View Full Version : Is Graham been banned from the Forum and all his posts removed

28th August 2016, 17:43
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

28th August 2016, 19:15
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

28th August 2016, 20:29
We hope to hear from you Graham so we know you are ok.


28th August 2016, 20:37
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

28th August 2016, 20:49
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.


28th August 2016, 21:33
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!

28th August 2016, 23:24
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.


Night walker
29th August 2016, 06:31
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

29th August 2016, 10:12
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;

Moving and handling
Pressure sore prevention/ skin integrity
Maintaining personal hygiene
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.

29th August 2016, 11:11
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

29th August 2016, 11:20
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

29th August 2016, 11:32
Thanks Terry, much appreciated update. It will be nice when the mnd chime in with some reassurance. :)

29th August 2016, 14:53
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.


30th August 2016, 10:19
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.

Forum Administrator

30th August 2016, 12:55
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.


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,


30th August 2016, 14:21
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

31st August 2016, 00:02
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".


31st August 2016, 09:48
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

31st August 2016, 17:37
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

2nd September 2016, 15:29
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.


2nd September 2016, 16:17
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.


Whilst many of us have lost the power of speech it appears MNDA are practicing silence speaks.


Night walker
2nd September 2016, 22:32
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

2nd September 2016, 23:28
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.



3rd September 2016, 02:34
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.


3rd September 2016, 09:24
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.

4th September 2016, 18:36
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

4th September 2016, 18:39
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

4th September 2016, 18:44
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

4th September 2016, 18:48
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 (alun.owen@mndassociation.org) 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

4th September 2016, 18:54
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,

Email: alun.owen@mndassociation.org


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,


4th September 2016, 22:33
"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.


5th September 2016, 11:18
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 Grahamís 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 havenít 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.

Forum administrator

5th September 2016, 14:47
+++ 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 James
Director of External Affairs
Motor Neurone Disease Association
PO Box 246, Northampton, NN1 2PR, UK
Tel: 01604611771
Mobile: 07876574844

5th September 2016, 14:55
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

22nd September 2016, 16:14
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.

22nd September 2016, 17:17
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.


20th February 2017, 20:32
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

21st February 2017, 10:42
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.


18th August 2017, 16:20
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

19th August 2017, 10:53
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.


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