A-Z

Motor Neurone Disease (MND)

Information needs

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...

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Age at interview: 55
Sex: Male
Age at diagnosis: 51
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When you did get the diagnosis, how did you feel about information? Did you want to know as much as possible, or were there some things you just didn't want to read too much about?

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...

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Age at interview: 72
Sex: Female
Age at diagnosis: 72
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Well, I, that hit me very early on. I really didn't want to be obsessed with the disease. Lots of literature came in. I saw somebody after - for a whole hour I think - after we'd seen and had the diagnosis, filling me up with all the things that were available, all the things to do. And I didn't really want to be lumbered with all that straight away. I still don't want to focus on the negative side of what's happening. I really think it's important to look for what is good, whether it's your family, my grandson, who's tiny, and whether it's art, or music, or gardens, or - I think quality of living is far more important than focusing on, you know, your finger's gone downhill and your face has sagged [laughs].

 

At first you can't take in any information. It is a good idea to have another appointment within...

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Age at interview: 60
Sex: Male
Age at diagnosis: 59
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You don't take it in, you don't know, when somebody tells you you've got a terminal illness, you don't know what questions you want to ask, you don't know at that moment in time how you're going to cope with it. And it's only when you've come away and you've, you've looked in each other's eyes and cried and all those sorts of things. And I'd like to see at least minimum - or maximum a week - probably a minimum of four days but certainly a maximum of seven days from being told that you've got a terminal illness to seeing again either the guy that told you, or the guy you've been referred to. Any longer than that I think is, it's outlandish, because you start to worry, really, really worry. You don't know what's happening to you. You don't, you know that it's there and things. And because it's motor neurone it's unlike cancer or something like that where there's a lot of pain involved and a lot of therapies and things and stuff they can do. There isn't that much you need to see professionals for. It, it's basically just peace of mind, as much as anything. It, it's being told what's likely to happen, what's, where you are with the disease, and all the rest of it. And answer your questions, 'How long have I got to live? you know. How long before I can't walk? How long before I need a respirator? How long?' you know. Because by that time you've been on the Internet, you know what's wrong with you, you've looked in your medical dictionary or whatever it might be that your reference is, and you've formulated the things you want to know. 'How do I cope financially when I can't work any more? Where do I get equipment from? Who do I talk to? Who do I need to register with?' you know, are all things that come up. But they don't come up until you've had that initial meeting to be told you're terminally ill. But you really want to talk to somebody within a, a week, I would say. Fortnight tops, but certainly no more than a fortnight. And I would say a week. A week is, is enough time for you to get your head round, you know, the immediate questions you want to ask and what care's there for you. As I say with motor neurone we're very lucky inasmuch that the Association in a lot of areas actually provide a nurse that you can focus through. And she's not a National Health nurse. She's fully qualified, but she's specifically paid for by the Association to look after the patients in that area. And you can always get her on her mobile. She'll ring you. You can't go directly to her, but she has a messaging service and you leave your, your number and she rings you back. And I'm fortunate. The one we have is absolutely brilliant.

 

He is glad the doctor did not tell him straight away the worst that could happen. No-one can...

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Age at interview: 60
Sex: Male
Age at diagnosis: 56
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I was upset. I think my wife more so. That's the difference between us I think. Also I have to say it did flash through my mind that it meant I could retire very soon and I was thinking, 'Oh, that would be lovely.' Perhaps I wasn't as aware of the consequences, perhaps I wasn't aware. And I don't think the doctor then spelt out just how soon, how quick it could be. I don't think - I'm trying to remember - I don't think he spelt out, he certainly didn't say the difference between going central core and legs. I think he said that the diagnosis wasn't very promising, that it would deteriorate. I think he said something about, 'People with motor neurone disease don't live much longer than ten or twelve years.' I'm not sure that he said that the average life expectancy was two and a bit. For people from diagnosis with central core probably fourteen months. Of course he wouldn't have had to say that to my wife, because she probably already knew. She's been much more aware of medical things than I have.

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...

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Age at interview: 80
Sex: Male
Age at diagnosis: 80
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The, something I was going to ask you arising from that is, is about the information. Because you, it sounded like you weren't given any information?

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...

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Age at interview: 45
Sex: Male
Age at diagnosis: 42
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Well as far as doctors and nurses go, we generally just see them when we go to the clinic and see the consultant and we see the MND nurse. Except when I have to go off for a particular tests about my blood circulation and things. What I would say is that they are, the feeling I had the last time that I went was, I mean obviously we're upset because it's like, the last time we went my arms had got a lot weaker. We'd hoped that that wouldn't happen. So we're basically reviewing it and saying last time we were here my arms were fine and now look at them. They're a lot worse. And, and that was obviously upsetting to realise that the disease had gone faster than we hoped because everyone is always hoping that it will go slower. And I just felt that the doctor and the nurse, they were obviously upset as well and they obviously feel impotent because you know they can't do anything really. Sometimes I sort of feel that they shield you a bit. They'll sort of 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.' [laughs] You know sometimes it's as though, and I know sometimes I've got the feeling that maybe they, it's just as upsetting for them as well. What I would hope that what they would do is, because at the end of the day I believe it's better to know, even if it is upsetting. And I think sometimes they just say, well they don't really know what's going to happen, when in fact they do know and for me at least I'd prefer to know. But I guess it's difficult for them to judge it. Sorry, that wasn't very coherent really.

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...

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Age at interview: 66
Sex: Female
Age at diagnosis: 65
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Well, I think because I'm quite inquisitive and say, 'Come on, spill the beans' they tell me in more of a blunt way, which my husband found very hard, because he tends to put his head in the sand a bit. And he didn't cope with it very well. But when it's yourself, I think you cope better than coping for somebody else, don't you? And I do push them a bit when I see them. It's like, you know, 'How am I doing? How long am I going to last?' [laughs] And they don't know, they don't know. Everybody's different. And the original specialist I saw, I saw him in September, and I said, 'I met a man at a garden party who'd got MND, but he'd had it for nine years and he'd plateaued.' And I said, 'That could happen to me. I could plateau.' And this specialist said, 'Ah, but a lot's happened in the last year, hasn't it?' [laughs] And I thought, 'Oh, I was trying to be upbeat and, you know, trying to look on the bright side.' And he was like, 'Get back down.' [laughs] So I suppose it was my fault for wanting to know everything. But I think - oh, and another chap I saw, who was a stand-in for the specialist, he was Irish, and he was really upbeat and boosted me. So as much as you want to know the facts, nobody knows the facts because everybody's so different. But if you do talk to somebody who gives you a bit of a lift, then it does help you, yeah. Because you can get, you know, really low. And nobody knows, they can't tell you.

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...

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Age at interview: 40
Sex: Male
Age at diagnosis: 39
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Some people plan for things, others live on a, a day-by-day basis. I try not to think more than a minute or two ahead [laughs]. No, I, I've not really felt strong enough to plan ahead like that for what might come. I know, I know other people around me take the effort to think ahead and, and concern themselves with those things. In a lot of ways I've been too fragile to, which has been another dilemma, really. It's been something else that I've found it hard. I've felt guilty because I've not felt strong enough to face those things, which then dumps that responsibility on other people. And for that it's, it's hard. But we all cope with things in, in different ways. I've never been much of an organiser [laughs]. So in that respect I've always been a 'wing it' type of person and it's worked for me. So now I suppose that's it. There is no fixed plan or structure. So I just adjust as each fresh problem reveals itself. You do. You find a way, find a way of coping and adjusting.

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...

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Age at interview: 57
Sex: Male
Age at diagnosis: 50
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In the penultimate meeting with the neurologist or test session with the neurologist we had asked what he suspected might be my problem and he did say motor neurone disease. At that point I knew nothing about the disease. And I didn't go rushing to the Internet to find out other people's opinion of it because I'm well aware that there's as much bad stuff out there on the net as there is good stuff. And who was I to well frighten myself shall we say unnecessarily, well not unnecessarily, prematurely.

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....

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Age at interview: 45
Sex: Male
Age at diagnosis: 42
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Finding sources of information, where you find information, it sounds like you've used the Internet '

Yeah.

' 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. 

 
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Access to professional journals on the internet helped him know what questions to discuss with...

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Age at interview: 58
Sex: Male
Age at diagnosis: 56
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I found it very useful with the Internet, both to be able to read about some of the tests that I was undergoing, so that one had a better understanding both of the kind of processes that were being applied, so you can talk more meaningfully to the specialists, and also to get a realistic sort of picture of what the conditions might be that one is being considered for, as it were. I'm talking now not just about what's normally available on the Internet but also specialist journals. Because there's obviously also a lot of rubbish on the Internet. So you're rather picking and choosing. And you don't necessarily use reputable sites. So, you know, again with a university background and with access to online journals and so on through the university affiliation, it meant that I was able to effectively read the same journals as the specialists. So that was quite useful.

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...

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Age at interview: 45
Sex: Male
Age at diagnosis: 43
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When I got in touch with the Motor Neurone Disease Association, they were so quick. I mean, I could ask them anything about my condition, they would tell me. Like when the flickering started in my arms and legs, they said to me, 'Yeah, that's quite normal.' But they're very, very helpful. I mean, at least it's in your mind, 'Yeah, this is what's to come, this is how it's going to be.' And with the information-wise they sent me a big booklet with the, all the information on it, and I read all that. It's very, very helpful.

So you read all the way through?

Yeah.

Because sometimes people don't want to read.

No, no. I did. 

Yeah.

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'

Yeah.

'at that point, but then you just'

Yeah.

'put it aside?

Yeah, mm.

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...

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Age at interview: 60
Sex: Male
Age at diagnosis: 57
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I'm a person that's a bit like an ostrich, I bury my head in the sand. So I didn't really know an awful lot about MND at that point, and - but I knew it wasn't good. Obviously my wife was very upset, and when we told our children, one of the things we told them was not to look at the website, because it would - I always think it's negativity. I know sometimes it's really hard to get the level right, but the prognosis on the website is like two to three years, whereas every case is different.

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.

 
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It's hard to find detailed information about suppliers of useful products. It would be useful to...

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Age at interview: 54
Sex: Female
Age at diagnosis: 52
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If you look at the MND newsletters and the D'feat magazine, there's a lot of information about research and how they're raising funds, and letters from people saying, 'Oh, my mother coped with it so well.' But there's nothing constructive about, 'What happens if I get this?' 'How can somebody help me with that?' How do I find out about this?' There's nothing really constructive. No advice. There should be an advice section where people can write in and offer information. I think that's sadly lacking'.I mean practical advice, like buying these things to go under your toes or wearing sheepskin boots. And sourcing them to get the best value, the best price for the boots. And, you know, really trying to find out where you can find some decent shoes to wear. I spent the last two months trying on sandals and trying not to buy the ugliest sandals that existed, you know.

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.


 

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