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.

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.

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.

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 whove 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.

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.

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.

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.

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.