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Motor Neurone Disease (MND)

Messages for professionals from people with MND

We asked people what their messages would be for health and social care professionals based on their experience of living with MND. Many such messages appear throughout the sections on this website, especially those on 'Information needs', 'Path to diagnosis', 'Speech and communication', 'Aids, equipment and adaptations' and 'Coordination of care'. Here we summarise some additional key points that people wanted to get across. 

Given the rarity of MND, people appreciated that many professionals they met would not have much experience of the condition and might find it difficult to advise them. However, some said they felt unsupported emotionally when health professionals had limited knowledge of their condition. One person said she thought GPs were 'frightened of their lack of knowledge about motor neurone disease.' Several preferred it if staff were open about this at the outset. One man was pleased his GP said he'd never treated anyone with MND before, and told him to let him know if he heard or read anything he thought the GP ought to know. Several people appreciated it when staff worked together with patients and their families to learn more.

The MND Association produces various publications to assist health and social care professionals who support people living with MND.
 

She'd rather professionals admitted knowing little about MND. She prefers it when staff work with...

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Age at interview: 59
Sex: Female
Age at diagnosis: 56
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I guess one of the things that's hit me the hardest is the fact that a lot of health professionals know very little about MND. And I understand totally that they do know very little about MND, but in some ways it would be helpful if they said so. Sometimes I feel I'm talking to somebody who pretends they know a lot more, and in actual fact I realise I'm the expert, not them. I'm the expert through necessity. But I think honesty really would be helpful. You know, 'I don't know about it, but I'll find out about it for you' would be much better than pretending they know about it. Other things for professionals. I don't know, I really don't know.

Is there any way the doctors or any of the nurses communicated to you, have there been any good examples or any not so good examples?

I suppose good examples are people saying, 'We're here to help you in the way that you need.' I've appreciated that more than the example of, 'Well, you're a very thin person. Therefore I think you need a PEG.' And that was really quite frightening. Because although, yes, I am a very thin person and that is one of the troubles with MND, I actually, I've only lost about a stone from my original weight, and I was a pretty thin person beforehand. So, yes, it's, 'Let's work together about finding what solutions you need' as opposed to, 'This is what I think you need.' That works better for me. Whether it would work as well for everybody, I don't know. But it certainly works better for me that way, yes.

 

There's a lack of awareness about MND. Their GP learns from them as the experts, but it can be...

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Age at interview: 54
Sex: Male
Age at diagnosis: 52
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Certainly there's a definite lack of awareness of MND with, with health professionals. [Mike writing on whiteboard]. Our GP openly admits, you know, Mike's the first MND patient that she's ever had, and might be the only MND patient that she ever has. So of course they're very much, they learn from what we learn, you know. And we've become almost the experts in MND in our situation. The frustrating thing is that when you do go out of the team - the team that work with us are, are superb, absolutely superb - but when you're taken into an alien environment, if something happens and you've got to go to a different hospital or whatever, it's so frustrating because there's so little knowledge about MND. And as I say to people, the people try to treat him as a normal patient, and he isn't. There's other factors that need to be taken into consideration. So for us there, there needs to be more awareness at the medical level of what actually is going on, you know. And there's some horrendous stories on the websites about how people are treated, how MND patients are treated when they go in. And God forbid, if Mike was ever on his own, I don't know how he'd cope with it. People that are on their own. So there needs to be more, more awareness about MND. It seems to get forgotten. Because it's such a rare disease, it gets forgotten, you know. One observation that I made just recently and I passed comment about it, when we go to the local hospital, the hospital waiting room is full of information about MS. There's not a single piece of literature about MND. Now it could be that Mike's the only patient that goes there with MND, but it doesn't matter. There should be information in that clinic about MND. So you just feel as though nobody's listening really, you know.

Several people found it hard when they were admitted to hospital and encountered staff who did not understand the condition very well and did not listen. People were also upset by inappropriate advice from some individual community staff such as occupational therapists, physiotherapists or dietitians who were not specialists. As one carer (Interview 41 - Roger and Teresa's story) said,

'There have been occasions where the professional might have been a little strident in dealing with people... when I've tried to intervene, taking the attitude, “I know what I'm doing”. And once or twice I've had to be less than gentle in the way I said, “I'm sorry, you do not know what you're doing. Please listen to me”.'

This was especially the case when the person had speech difficulties and staff were not familiar with how to communicate. (See also 'Speech and communication with MND'). Several made comments such as'

“You are 'compos mentis', you do understand and you are normal. All that's wrong is your voice.”

“People who can't move or communicate, you must assume that they are aware, even if they don't appear to be. You must assume that they can feel, even if you think they can't. And you must treat them as if they were your own new-born child, with as much care…It could be your daughter, your son, your wife, your husband.” 

“Don't automatically think that because you can't speak properly that you must be senile.”

One woman's father had some bad experiences on a general neurological ward, including one nurse who seemed to be deliberately cruel. However, she singled out a particularly good example of care from an auxiliary nurse who was given extra time to be with him. As, she pointed out, a key problem in caring for people with speech difficulties is that they need more time to communicate than staff can afford.

 
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An auxiliary nurse used her father as a case study for her NVQ and it was wonderful she had time...

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Age at interview: 49
Sex: Female
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I have to balance out what I've said about one particular nurse with an equal story about an auxiliary who decided to use my father as a case study for her NVQ, and she was absolutely wonderful. And she was the last person to see him alive. She was with him. Because she decided to use him as a case study she was allowed to spend a good two hours with him, brushing his teeth, let's say, or making his bed or something. And she was wonderful. For as many dire people there are absolutely wonderful people and she was one of the best. She wasn't the only one but'

The head man, whatever his correct title would be, would visit once a week - I think it was a Friday' And it struck me that the younger doctors underneath him, most of whom seemed to be women, were completely at sea. They were either nervous or just didn't know how to handle the situation. And so they didn't really visit him much, maybe.

I mean the communication aspect is to me the biggest thing about brain injured patients. I know there are a lot of difficulties caring for a person like that, but one of the most important things for that person is to be able to talk, however they do it. And if they need someone else to talk, to allow them to talk then I think perhaps, they perhaps need the opportunity to do that more often than they are getting. Otherwise whole days will go by when the only conversation has been, 'Do you want a drink?' I mean they may as well be in solitary confinement.

Another man was upset during a hospital stay for his diabetes that staff did not seem to understand MND well, and were inconsiderate.

 
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When he was in hospital for his diabetes, staff didn't understand his medication, and kept taking...

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Age at interview: 62
Sex: Male
Age at diagnosis: 53
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I ended up in a situation over my medication where I was having arguments every day over the medication and the dosage which wasn't doing me any good. If they'd said, 'You can't have that because of the diabetes', I would have accepted that argument, but that never came into the equation. Handling of patients, they weren't really up to it because they didn't have the right equipment on the ward. Apart from that, the staff, the nurses, when you compare them in the hospital when I was in the rehab ward, as different as chalk and cheese. In the rehab ward they couldn't do enough for me, which made me want to do more for myself, to try and help them. 

When I was in [hospital treating his diabetes] it was nothing for a nurse to come and take my wheelchair to move another patient to another part of the hospital, and even though my wheelchair had labels all over it saying it was my property or in my care, they never once asked and there was arguments with staff over that. Not only with staff, it caused bad feeling between other patients and myself, because they thought I was being selfish. But it's not that, if my chair did not come back to me, then I had a bill of approximately '200 to pay, which is a lot of money for people in our circumstances. But you couldn't get the staff to understand that. And instead of saying, "Do you mind if we borrow your chair for an hour?" they'd take it. To me if they'd asked, I would have said yes, I would never say no. But they'd just take it without permission. That not only was, in my way of thinking, extremely rude, but also I thought it could be construed as theft. And one male nurse, I threatened him with police action unless he spoke to me first and stopped taking it out as and when he wanted to. It seemed easier to take a chair from the end of my bed, on the side of my bed, than getting one out of the room further down at the end of the ward. And I found it very, very annoying and upsetting because it was constant.

However, a few people were concerned that negative stories about care are much more likely to be told and remembered than positive stories, which means people may be frightened unnecessarily. 

 

Her care on the neurological ward was excellent. She would like to hear more positive stories...

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Age at interview: 39
Sex: Female
Age at diagnosis: 38
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I thought that, that my time on the neurology ward was excellent. I've got no complaints at all. And it seemed to work very well there. And see, observing them with other patients with neurological problems, you know it all seemed very good to me. I've obviously heard some negative points but unfortunately you only ever hear negatives. You never hear people saying about the good points so, which is quite sad really because I think for every negative you'd most probably find three or four good points of positives but no one ever sort of mentions the positive side. So because I've heard so many negatives it really makes you frightened to go into hospital as a patient with MND because they say that outside the neurological ward that people have little understanding of your needs, you know, and what you're going through. But again I, I'm keeping a, my opinion on that is going to stay neutral because I'm sure there's a, lots of positives out there that no one ever hears about. So I'm afraid I can't say anything from my own experiences. I haven't had anything really bad happen to me. I've just had positive experiences myself.

And you've had very positive communications with your GP.

Yes, yeah and with all, all, all healthcare professionals that have been related to, well or connected with I've had only positive aspects. There's nothing about it that I could say is negative at all.

When it came to staff who specialised in MND, many people were impressed with the quality and kindness of the care received. Inevitably there were also criticisms of the manner of some individuals, but most people recognised the difficulties of meeting every individual's preferences. The difficulty of getting the right balance for each person between being honest and realistic, but also being positive and reassuring, is explored especially in the sections on 'Immediate reactions to diagnosis' and 'Information needs'). One woman said, 'Be honest but tender', and a man suggested, 'Accept that people can be proud, and just be gentle with us.' Another woman said, 'Put yourselves in our shoes. Sometimes they deal with so many people and I feel we're just a name to them, because it was a devastating diagnosis for us.'

Most people were well aware that there is no immediate prospect of a cure, and that there was a limit to what professionals could do to help. They also understood that it was impossible to predict how their symptoms would progress and what their life expectancy would be. Several people suggested staff could share more openly with patients their uncertainty about how the condition would progress. Some said they could use the fact that progression is so varied and unpredictable as a positive way to offer hope. A few said they did not want to hear anything negative at all, including one man who said, “I do not wish to hear anything of the future. I don't want anything negative. I only want positive. If they have nothing else to say, better not say anything.” Others thought it was more a question of balancing the positive and the negative.

 

She suggests professionals need to give people 'good facts as well as bad facts', because people...

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Age at interview: 66
Sex: Female
Age at diagnosis: 65
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Well, I think with regard to professionals, I agree that you should spell it out and say exactly what the condition is, but also give people a bit of a lift and say, 'It could plateau. You could be like Stephen Hawkings. It's not all doom and gloom. And you just don't know.' Because you've got to have something to cling on to, to think, 'Well, you know, it could take five years, ten years.' But you've also got to have the facts that it could be one year or two years, or whatever. So I think I've always wanted the facts, but you've got to have good facts as well as bad facts. And I would say the same to any other MND sufferers who've just been diagnosed. You don't know, nobody knows what's going to happen. And cling on to the things that it might not happen. And there is so much help out there, and everybody's so lovely. They're all really kind, lovely people, caring people. So there is a lot of help. And just cling on to little rays of hope, really. Because you just don't know. And at the beginning I did get very low [door closing], because it was all doom and gloom. But then as time goes on you think, 'Well, there could be a plateau, there could be a cure.' You just don't know.

 

He feels staff should offer newly diagnosed people positive suggestions for what they can do to...

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Age at interview: 56
Sex: Male
Age at diagnosis: 53
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Edited text prepared by Peter

After diagnosis, doctors should be able to propose measures that the individual, the patient with the help of the medical profession and other bodies, can take to try to fight the illness, to give them something to do rather than sit at home and wait for death to come, or complete paralysis to occur. This could include suggestions for physiotherapy and appropriate massage, but not just for relaxation purposes. This kind of treatment should be taken in order to maintain muscle tone and, where possible, muscle strength. The only physiotherapy whatsoever suggested was by my local [Occupational Therapist in my borough]. There was no attempt to suggest any kind of physiotherapy in the hospital of neurology that I attended, or indeed any other kind of useful help in fighting my condition. I think physiotherapy is very important, as is better care and nursing assistance to allow people to have some modicum of movement in terms of getting out and about. A suitable diet encompassing the right kind of vitamins could also do much to maintain a patient's health. On another tack, potential hobbies or interests that a patient would get into should be explored. I have to repeat that only going to the shops once a week and watching television every day is not an option  as it weakens the desire to live and thereby can speed up progress of the illness. I also think that better financial support to spouses and partners of people affected by MND would go a long way towards making more informed choices in their attempts to fight the illness or at least live with it.

What about information?

Information about various organisations is a must. And not just the MND Association, but various people you can contact and various websites you can look at. I think that any information about the various options open to sufferers, their relatives and carers by way of help with, and research into, this illness should be readily available. Reading up about MND, from symptoms suffered through remedial treatment to research into possible cures, should go a long way towards assisting those affected to push on with their daily lives with some hope for the future. As an example of positive thinking when viewing patients by the medical profession, potential eventual cures offered by the existence of stem cell research should not be ignored, but at the very least doctors should be able to say, 'Yes, this is currently being investigated. At the moment there is no cure, but we are hopeful.' There may be a reason why they don't say this. Somebody might sue a doctor for giving false hope, but at the end of the day these people must be given some way of coping with as much information as possible about being able to help themselves and not just left to their own devices. Being told to go home and live as normal life as possible is just not an option. Doctors have to be able to give a raft of hopeful hints of what can be done to tackle MND on a daily basis, for instance vitamins to strengthen the body, physiotherapy to strengthen the muscles, contact with an occupational therapist, taking part in research, etc.

Better investigations into the possible causes such as Lyme Disease and other ailments could also be pursued. 

On the other hand, one man (see Interview 18 - Jim's story) felt staff sometimes tried to hold out hope when really there was none. He could see it was upsetting for them as well as the patient.

'I just felt that the doctor and the nurse, they were obviously upset as well and they obviously feel impotent because they can't do anything, really. Sometimes I sort of feel that they shield you a bit. They'll say things like, “Well, maybe it won't go up to your neck and your neck won't get weak.” And things like that, and I'm sort of thinking, “Of course it will”.'

Given the variable nature of the condition, another common thought was that people needed to be assessed and treated very much as individuals. 

 

She advises people to 'live each day'. Professionals need to assess everyone as an individual and...

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Age at interview: 45
Sex: Female
Age at diagnosis: 37
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My message would be that, although it might seem like the end of the world when you're given that diagnosis, that there is light at the end of the tunnel, and it's not the end. It's the start of one hell of a long fight, but you've just got to live each day and try, that you're living with it and not dying from it, and hopefully. And to professionals I would say that no two people are the same. Even if you meet, know what motor neurone disease is, just because that one person needed a ramp, that doesn't mean that everybody with MND's going to need a ramp. We're all different. And to at least assess everybody as an individual, not just the illness, because everybody needs, needs different things. Often I find that very frustrating that professionals think, 'Oh, well, you've, you've got to have this, because' - but that might not be the answer for me, and it might not be the answer for anybody else. We are all different. And that there is help out there for people to share experiences and that they're not alone.

        

 

He felt the care package offered wasn't tailored to his daughter's needs as a young person. Paid...

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Age at interview: 62
Sex: Male
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One of the problems with the care package that comes with the Social Services and that's people coming in supposedly to wash and to dress the patient, Olivia in this case, they can't lift, they're told the can't do any lifting. They therefore can't bath properly because it involves lifting. It's a good system for people who are geriatric and who can't do the things they used to be able to do. It's a hopeless system for people who are in Olivia's situation, because you're getting different people in. Each of them have to form a relationship with the patient, and although it's quite possible the vast majority of their patients are geriatric, you get a carer organisation that comes in and starts dealing with a twenty-two year old, apparently healthy young woman, they're not equipped for it, basically, they don't have the right skills. You can't come in with a cheery 'hello dear' and hope that you'll strike up some kind of relationship with a patient, because she's an intelligent girl. And she shouldn't have to explain to each of them in turn as they come in what the procedures are, what they have to do, wash her hair and dress her or whatever. In fact they didn't do any significant washing. They did sort of bed washing because we would bath her once every other day, basically. So we'd go through all the lifting and bathing. It was obviously a very intimate thing and yet it was something that obviously comes naturally to parents.

A number of people felt that problems were often down to administrative mistakes or problems with the system rather than the fault of individual staff.

 
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The professional staff are fantastic but they sometimes don't have the facilities to do their job...

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Age at interview: 62
Sex: Male
Age at diagnosis: 53
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The health service have now reached the stage where the medical care staff, doctors, nurses, are doing a fantastic job but they haven't got the facilities to do that job. We get appointments sent to us, and then a telephone call saying, 'Oh they've made a mistake.' So we phone the consultant's office to find what date he wants to see me because the staff concerned are getting it wrong. We shouldn't have to do that. And the question is there have been millions of pounds funding the health service by this Government, where has that money gone and what has it been used for? Because I can only speak about Wales, the big movement in health care in Wales at the moment is the closure of hospitals. Now that is never a good thing. It means people have to travel further for their care. It also means a lack of visitors when they are in hospital because people can't travel' People are having to try and find transport to a hospital, not only to visit loved ones, but for treatment and to attend clinics as well. Now I know from my own experience how tiring it can be when you're not fit. It used to take us an average of five hours to travel from here to the hospital in London. We'd be in the hospital two and a half three hours and then we've got a five hour journey home. Now, although I was grateful for the fact that that facility was provided, and the transport was also provided, I must say that, and I'm very grateful for that. But when you know Wales as well as I do, and know the road structure in Wales and know the length of time it takes to get from major town to major town, then it is not on to close local hospitals and force people in to long road journeys. Very often there is not an ambulance service in most of these areas, there's not a train service. They're forced then to use their car. When they arrive in these hospitals, they've got to pay to park.

 

She has been very pleased with all the health professionals. Sometimes they are let down by the...

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Age at interview: 58
Sex: Female
Age at diagnosis: 55
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I've been very pleased with the health professionals. I think they've been very sympathetic and very helpful. The neurology outreach team has been very useful as well. They've actually come out if I've needed them. And they're always there at the end of a phone line. There's a helpline you can ring. I don't like going to the hospital because of the lifts and things like that. I find it quite claustrophobic having to go in a lift. And the lifts are very, very crowded and I really don't like that. It's really quite scary. So I dread the hospital visits simply for that reason. I think if it was on the ground floor I wouldn't mind nearly so much. But that's one of the things I don't like. 

But the healthcare professionals, they have their own problems. You know, they get different managers in, who mess up their schedules and things like that. And any problems have come from that, really, not them as people, but because they're being messed around by management, really. But I must say the girls who deal with me are very, very nice and I have no complaints about them at all. And I know that they get together, and one of them will say, 'Well, I'll talk to so-and-so about that for you and see if I can get, you know, if she can recommend anything'. So they're actually having a three-dimensional approach, really, to helping me. So I'm quite happy about that. I haven't had any time to use carers, really, Social Services carers or anything like that, so I can't really comment about them at the moment.

The NICE guideline on motor neurone disease (NG42), from the National Institute of Health and Care Excellence, provides recommendations to health and social care professionals about how to provide appropriate care. These guidelines can help people with and affected by MND access suitable care. Resources to help people use the guideline, and make complaints about inadequate treatment and care, are available on the MND Association website, including an introductory video and a pocket booklet on what to expect from care with MND.

The MND Association website also provides information for professionals about MND. This includes a range of educational opportunities to health and social care professionals to enable them to develop their skills and expertise so they can make a difference to people affected by MND and improve their quality of life.

Last reviewed August 2017.
Last updated August 2017.

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