Motor Neurone Disease (MND)
Information needs that people told us about included:
- before diagnosis, about the tests they were having and what conditions they were being tested for
- after diagnosis, the types and symptoms of MND
- information about research into causes and new treatments
- advice on what aids and equipment were available and how to obtain them
- benefits and other financial information
- information about interventions to help with eating and breathing
- the range of care services available and how to access them
- information about what to expect as the condition progresses.
However, people's views differed widely about how much information they wanted and when. Many wanted to be well informed, especially as MND is rare - few people knew much about it before diagnosis. At the same time, many felt that the information given could feel overwhelming and negative, especially at diagnosis. While they recognised that health professionals have a duty to be clear and honest with their patients, some thought the pendulum had swung too far towards giving information whether they wanted it or not. Some were pleased not to have been given the full picture straight away, and some still did not want to have detailed information. The MND Association's information stages the information to allow people to absorb it in their own time and at their own pace. Introductory booklets and information sheets provide bite size pieces, while their guides offer more comprehensive content, such as their main publication, Living with motor neurone disease. Even this can be accessed as separate sections on the website if people wish to tackle them one at a time. They have also introduced other formats, such as easy read or in other languages, to help people access information in the way that suits them best. You can download their resources on their website.
Straight after diagnosis he did not want information about MND, but then he decided to find out...
Exactly. That's, that's when I will come back to, to my reactions, that lack of hope first. And then afterwards, being what I am as a competitor and as a scientist, I said, 'I want to know. And I will look as much as I know, as I can about this condition, to know the enemy and know what I can do.' Because I was still convinced that there was a way to, maybe not to fight it and win, but there was a way to, to hit back. And that was exactly what put me, or helped me put these things in perspective. I was finding a way to hit back. 'Okay, I cannot stop you, but I will hit back.' And this is where I started after three years, two years and a half, to really find a way first of all to adapt to this wheelchair condition etc, start to find a sense of humour about these things, accept the situation of my family, children etc. My move to the UK was part of the, of the hit-back, to say 'Okay, I change completely my life. I am no longer in France. I'm here, which I always wanted to be.' And things started to, to crank, crank on since that time. I came here in February 2004, just after, after the diagnosis, and from that point on I just restarted my life differently. And of course I went to the MND site here in the UK. I received a lot of information and continued to inform myself. I bought books of medicines, and studied the problem, 'I'll see, okay, well, this, what they are doing.' And I'm still continuing to study it.
After diagnosis she spent an hour in clinic being given information. It was too much at that...
At first you can't take in any information. It is a good idea to have another appointment within...
He is glad the doctor did not tell him straight away the worst that could happen. No-one can...
So we then went along to the motor neurone disease clinic in [city]. And the nurses and the doctor there were great. They answered all the questions we wanted. I think by then - it was a week later - and by then I was in a position to want to know. Perhaps the week before I didn't necessarily want to know all the details. By then I was getting curious. We didn't learn everything then, obviously I didn't ask all the right questions. And perhaps correctly he didn't tell me all the details of what would go wrong, largely because I suppose nobody knows. I think, as I said, I know probably twenty people with motor neurone disease, and I don't think I know two people who've started the same way or deteriorated the same way. I know people who've gone legs first. I know people who've gone from the side first. I know people who first discovered they couldn't swallow, people who first discovered they couldn't talk, people who fell over for no reason, they just sort of seemed to have had a loss of balance. It's such a weird disease to predict.
He does not want any information about MND and what other people feel. He wants to experience it...
Nothing at all.
Nothing, not even a leaflet?
Nothing, nothing at all, nothing, nothing at all. And I didn't ask any questions because I didn't know anything about what it was and all that. And even my doctor didn't know anything about it either. And, I just was not interested to know. Because it, I've heard a lot of people have cancers and things they are going through and all that. But I was only thinking in terms that I want to experience, have the experience of going through. I want to, it's like I want to, writing a book of my experiences every day. I didn't want to know. Later on a letter arrived and a lady arrived and, who is in charge of this Association.
The Motor Neurone Disease Association?
That's right. And she arrived and she took down the details and et cetera et cetera. And then later on I've been sent all the details about what the Association is about and this and that, and all that. And then a magazine arrived. There are pictures and all that. And there, I mean, everything was so happy and all that, it said so. But it didn't interest me, because I wanted to have my own experience as such, because other people's experiences have nothing to do with me. That's what I thought. And still I live with this same thing, same adamant sort of strong-headed thing. And then a volunteer person who comes over here to me, see me, fortnightly, he comes. And it's nice of him to sacrifice his time, and coming just for my benefit, to come and be with me, sort of thing. But I did not wanted the interference, that somebody should come and tell me what it is about and all the details and things, I'm not interested in at all. Because it's my own discovery, I want to discover myself what the pain is. Good, the only good point is that I don't have pain. That's the best part I think, that's a great thing. I do have sciatica pain in my left foot. And so I thought it was, it, it was the weakest point. It was not. It's the other one which is [laughs]. Anyhow, but another thing which I found, which I think everyone, I would advise to other people, they must never go and tell, show the worst side of it. Whatever they may say, they always use positive words, encouraging words. 'Oh, you'll be all right tomorrow. It will be better tomorrow. Something will - you should look forward' and that sort of thing, rather than hearing a day of, day of doom or something. No. That doesn't, that doesn't help at all.
People with a family history of the condition were of course in a rather different situation. As one woman said, “It's like living with a time bomb. And I can't electively choose not to know. I can't dip in… because I already know too much.” However, MND has a variable course and it is impossible to predict how each person's condition will progress, whether there is a family history or not. Each person's journey is unique, as is each person's attitude to finding out information. It can be hard to get the balance between giving people enough information to prepare for all eventualities, while at the same time reassuring them it may not happen to them. In addition, sometimes health and social care professionals themselves may have limited knowledge and experience of MND, making it difficult for them to pitch information at the right level. The MND Association runs a series of educational events and study days to support health and social care staff in learning more about MND.
He prefers to be told if his symptoms have progressed, even if it's upsetting. Staff have a...
No, it was. That's okay.
Yeah, right. So I, I would prefer them to be, to be as honest, but I guess there are other patients where that isn't the case, you see. Where there might be other patients who desperately don't want to know. So they have to try and make a judgement.
She wants honest information, but it's good to be given some hope and encouragement, not just...
What about your husband and, and, since the diagnosis, how has he coped with it?
Well, he put his head in the sand for a long time. And I had to keep saying to him, 'Come on. This is happening, you know. You've got to face up to it, because I can't carry you through it. I need your help to get me through it.' And that's how I felt I was being, that I was being the strong one for him. But then sometimes I'm not that strong, and I need him to lift me up. Anyway, he's a lot better now. And having never cooked, he's cooking and doing everything. But it is hard on your family, I think, and your friends.
What about telling the children, how quickly did you tell them?
Straight away, yeah. Of course, nobody knows anything about it, because it's such a rare thing, isn't it? I'd only heard of Stephen Hawking with it. And he's had it about thirty years, hasn't he? So you think, 'Well, it can't be that bad.' [laughs]. So then of course everybody gets on the Internet and looks it up, and it's all doom and gloom. And you've just got to say, 'Well, you've got to think about what you've got, not what you've not got.'
You need to know some things, but he feels too fragile to find out about progression and...
I guess that's linked to what we were talking about earlier before we started, about the information, and how much you wanted and when.
Definitely [sighs]. I wish I'd never heard of MND [laughs]. Having said that, the information that you want, in real terms you want as much as you can cope with. You need to know certain things. If you're broad-shouldered and you feel you can cope with, with more information and, and you can look at prognosis and find that comfortable, fair play. I' I wasn't comfortable with it. I'm still not comfortable with it. I'm very keen to prove them wrong [sighs]. It really is about knowing what you can cope with or, or sticking within those limits, I think. It's not been very easy to cope with. Having said that, unlike certain other conditions I've been given some time with which to organise a goodbye, organise a legacy, generate memories - whatever you want to, to see it as. You have some time to do certain things, which - I could have had cancer and been given six weeks. So.
What would you say to health professionals about how they ought to approach people with information?
[laughs] Advice on how you deliver things like that? Wow. [pause] Where would you begin with that? It - I appreciate it's a very sensitive area and, and I felt they approached my situation with sensitivity. I don't know where I would begin to, to advise on that. It's just, it's a hammer blow. However much velvet you wrap it in, there's a hammer behind it. I'm certainly not saying just, 'Out with it and, you know, whatever with the consequences.' I don't think there's ever going to be a nice way to tell somebody they have a condition like this.
Several people referred to how MND is represented in the news and media, particularly in terms of progression and life expectancy. Professor Stephen Hawking was often seen as a positive example of a long and productive life, but it was also pointed out that his circumstances were very unusual and might be misleading. By contrast some people remembered the case of Diane Pretty (who fought a legal case over whether her husband could help her end her life), and felt the emphasis on distressing symptoms and loss of dignity in news reports of the time could be equally misleading. People felt there was little between these two extremes to give a more balanced picture, despite the efforts of the MND Association to raise more informed awareness.
Several people with a diagnosis of PMA (progressive muscular atrophy) or PLS (progressive lateral sclerosis) would have liked more information about their specific form of the condition. Some were diagnosed some time ago, and said not much had been available at the time, though the MND Association provides dedicated information. (See footnote on less common types of MND diagnosis).
The consultant who diagnosed PMA 7 years ago gave him no further information and did not suggest...
When we went back for the final consultation the neurologist had made his mind up and he told me there and then that I had progressive muscular atrophy and that was about it. There was, as far as I recollect, there was no prompting, 'You go along to the Motor Neurone Disease Association' or he did say, 'You could go to another neurologist for a second opinion'. And he actually advised quite strongly that I did so. I suppose partly because it was PMA that I had which is relatively rare even for a rare disease. That was probably about the best advice he gave me if you like. And subsequently I did go to another hospital, another neurologist and came up with the same conclusion. But in terms of advice and care and that sort of thing there wasn't any available. I think things probably have improved but whether that particular doctor has improved his ways, I've no idea.
What would you have liked to have had then at the time? What information would you have liked to have had from them?
I suppose I would have liked to have more specific information about PMA. This is going back about, what eight years, something like that. So I'm not entirely sure what the Motor Neurone Disease Association website had to offer in those days. Anyway I wasn't put in that direction, pushed in that direction or advised to go in that direction. I think just more information about Motor Neurone Disease and well particularly my PMA.
The doctor, the neurologist did say that he obviously couldn't make any promises but that ten years was a sort of rough norm, ten years of life after diagnosis was a rough norm for people with PMA. And I've had it, as I said, getting probably on for eight years now and I'm still walking around and still toddling to the shops. I don't cook but some people say I couldn't anyway. So I think I'm doing much better than, well than 10 years anyway. And for which I'm grateful when compared to the vast majority of people who live for perhaps two years after diagnosis.
The most common sources of information were the MND Association's printed and online information, other internet sites and forums, specialist clinic staff, local MND Association regional care development advisers and/or Association volunteers, and other people living with the condition. The MND Association recommends that people should be told how to get in touch with the MND Association at diagnosis. This information should be offered again later on, as people may not wish to get in touch straight away.
The information sources he's used include the internet, books, the MND Association and BUILD....
' quite a lot. Have you used any other sources?
Yeah, you can, there are some books about motor neurone disease how to cope with motor neurone disease or something. There's a couple of books. They're worth getting. I also went on the Internet and found out any books that had been written by people with motor neurone disease and some of those were helpful in terms of, because in the early stages I was really frightened that I wasn't going to be able to cope, and it was quite helpful to read books that were written by people that were further on than I was and they were coping.
And I also, I got in touch with the Motor Neurone Disease Association and you know, their, care organiser came out and spoke to us. And I also went to some of their meetings. And I also went to the home of a person, another person with motor neurone disease that lives quite nearby. And I went to her house a couple of times and spoke with her and her husband and my wife went as well and, and that was really helpful in terms of finding out, you know, what, what you need to do and that kind of thing.
But yeah, I do get a lot of information off the Internet as well. And because there's this, there's the BUILD website, so there are people there with motor neurone disease you can ask, you know, like really practical questions, like 'How can I carry on eating when my arms don't work?' or 'What's the best kind of wheelchair?' or, those kind of things. And they can, they can give you quite good advice there. A lot of the professional people that you meet, don't really know about motor neurone disease. They don't know that much. And a lot of them, I'm amazed at how many of them get it mixed up with multiple sclerosis and other illnesses. So they and that, and that just means that you can never totally rely on any of the advice that they give you because you know that they don't, they don't really know what they're talking about [laughs]. So sometimes it's better to actually to get it from another person who's got motor neurone disease.
People valued both the internet and personal experience, but all health information on the internet varies in quality. Some people cautioned against the amount of misleading material from unreliable sites.
Access to professional journals on the internet helped him know what questions to discuss with...
Several people preferred to rely on the expertise of their specialist neurological staff or the MND Association. Most people felt the MND Association provided excellent information, but a few people read more detail than they were ready for and one person described it as 'pretty scary reading'. As noted earlier, the MND Association tries to present information in stages to respond to individual needs, but people themselves may not be sure quite how much they want to read. One woman explained,
'I got loads and loads of information, big books of what it was all about, that in the end I just couldn't read it. So having been very inquisitive at the beginning, then there was too much information, because everybody's very different. And you read about how it can affect you and you think, “Oh, gosh, I don't want that”.'
The MND Association recommends reading information that feels relevant at the time. As MND is a complex disease, there are many areas that need to be covered, but you don’t need to read everything all at once. You can return to different subjects as symptoms begin to appear or progress. This can be very unpredictable, so each individual can select information according to their particular needs.
He read all the MND Association information so he knew what he was facing, then put it aside. The...
So you read all the way through?
Because sometimes people don't want to read.
No, no. I did.
Yes. I think it's really nice to know what you're going through. At the end of the day it might not happen to you, but then it's always nice to know. I mean, you, I've read it, it's gone out of my mind, I've put it to one side. And I think the only thing you can do is stay positive, and not...
Okay, so you sort of, like you, you wanted to know'
'at that point, but then you just'
'put it aside?
Was there anything about the information that you got from the hospital, or didn't get, that you think could have been done differently?
I think if, they should, like when the consultant actually knows what it is when he diagnoses you, I think the information should be available there and then. I think the Motor Neurone Disease and the doctors, they need to communicate, or they should have information [brief microphone interference] available at the hospital.
He told his family not to look at the MND Association website because he feels the information...
Several people found it difficult to get detailed information about suppliers of particular types of equipment and complained that suppliers would often take a long time to get round to explaining their prices. As one man commented, “They never tell you what the price is. Every time we've rung up for a quote for something, the first question they ask me is, 'Do you have a grant?' 'No, I'm paying for it myself.' And the price immediately rockets.” (See Interview 28 - Phil's story). One person suggested a special area on the MND Association website for people to exchange information directly with each other. This can now be accomplished through posts and conversations on their online forum.
It's hard to find detailed information about suppliers of useful products. It would be useful to...
As a matter of policy, the MND Association does not endorse services or products from specific companies. However, it does invite people to share practical tips and problem-solving ideas, and seeks to incorporate these into its written and online information. Practical information-sharing is also a benefit of getting in touch with other people with MND (see 'Support groups and meeting others').
The MND Association advises people thinking about specific pieces of equipment to discuss it with a member of their professional care team first, as it can be important to get a professional assessment done. (This might be their occupational therapist for example). The assessment can help identify the most suitable piece of equipment and the care team should be able to advise if it is available from statutory services. Some people may choose to go direct to a private supplier, though it is important to bear in mind that very few private suppliers will have enough experience and understanding of MND to help them advise customers appropriately.
Further advice and support is available on the MND Association's website.Their website pages and information resources are regularly revised, and continue to expand in order to meet the wide ranging needs of people with and affected by MND. If you have just been diagnosed, a good place to begin your search for information is their page ‘Where can I find the information I need?’ Their information resources for children and young people can also help families communicate about MND, to help younger family members cope with the changes happening around them.
Health and social care information from the MND Association is developed and updated according to the criteria of The Information Standard. This accreditation is governed by NHS England and means their information is considered trustworthy. Content is evidence based, user tested and reviewed by qualified experts. Revision and new work is steered by feedback and requests from people living with or affected by MND. This means their publications also feature personal experience and guidance on ‘things I wish I had known at the start’.
Information is a theme running through many of the other sections on this site, especially 'Path to diagnosis of MND', 'Immediate reactions to diagnosis of MND', 'Possible causes of MND', 'Finances and benefits' and 'Aids, equipment and adaptations'. People's attitudes to information are closely linked to their general attitude to living with MND, which is explored more in 'Philosophy, attitude to life and messages for others'.
Footnote: less common types of MND diagnosis
A few people diagnosed with MND will be told they have a less common form of the condition such as PLS (primary lateral sclerosis) or PMA (progressive muscular atrophy). PLS affects only the upper motor neurones, and PMA only the lower motor neurones. The first symptoms of these forms are very similar to other more common forms of the condition, so in the early stages it can be difficult to distinguish them. In PLS, legs, hands or speech can be affected as well as sense of steadiness in walking, and in PMA it is usually hands or legs. People with these forms generally live longer than people with more common forms of MND, but they share many of the same problems of increasing disability. For further information about the symptoms and progression of these forms, see the MND Association's website.
The MND Association provides a range of information sheets, including content about symptom management and 2C: Primary Lateral Sclerosis and 2D: Progressive Muscular Atrophy.
Last reviewed August 2017.
Last updated August 2017.