I still go to the hospital regularly. it’s just been changed to six months, four years later. It has been three months. I went during the first year – the trial lasted a year – during the first year I went every three weeks. I had blood tests taken, I think more regularly than that but certainly every three weeks, but those were the terms of the trial. So I think that by joining in with the trial I actually got better looked after than, or more regularly looked after than I would have done had I not been on the trial.

Yes, I suppose that brings us on to sort of reasons for taking part in research. What would you say?

Totally selfish, totally selfish reasons.

Yes, well, when the tumours were taken out of my leg – and I’m not sure about the skin cancers, I don’t know what happened to those – but I know for sure that they kept samples of the tumour, of the tumours, rather, and when I then started to my treatment for, on the trials, they asked if they could send off the samples of the tumours to understand better the proteins. Because the big problem for them is understanding how different proteins react to the treatments, because there’s a feeling that there’s a key there somewhere, and that’s why some treatments work better with other people and not with others so, yeah. I mean it’s quite interesting, yeah.

So they were linking it to your individual results in that trial?

Definitely, definitely. They wanted to know before they started whether – on the first trial – whether the proteins on the surface of my tumour actually were the sort that they thought they could treat.

So again it was directly related to my treatment, I suppose, you know, there was possibly a direct benefit to me, yeah.

I like the idea, I like the feeling of being able to help other people, and if it was, I suppose I’d still be keen to help other people even if I knew it wasn’t going to help myself. I did take part in another research project that was to do with drinking fruit juices, and that seems fairly innocuous and easy to take part in, but I had to drink a particular fruit juice, oh, once or twice a day? Anyway I lasted a couple of days on that project and the fruit juice tasted so foul that I just – I mean, I was given a month’s supply and told to take, you know, two of these every day, and I just said to myself after a couple of days, this is, this is too painful, it’s too much like hard work. And I just sent the box back [laughter] with my apologies and for wasting their time and they were very good about it, and they didn’t like the stuff either, I think.

That’s quite a problem. it’s got to be palatable, hasn’t it, if people are going to comply with the treatment?

Indeed. I have no idea what it was… supposed to achieve. It was some university project. But also, as I’ve said, it’d be silly to say, if a cure could be found for MND in my lifetime, then I’d be foolish not to want to take part in research to help find this cure.

You know, and the one thing I find from doing this is, you know, I’ve had my cholesterol tested, everything else I think has been tested in me, and I know that I’m relatively healthy.

So being reassured about your own health is

Yes.

A sort of a part of it, but not–?

Yes it is, it is a part of it, yes, and especially I think as you get older. As you get older you do get more things wrong with you. I think every generation we all think we’re so much healthier than our parents were; I’m not convinced of that really. But I like to think that, you know, I can be, you know, without me having to go to the doctors for an annual check-up, I’ve more than likely done, for the last three years, I’ve more than likely done three studies. I think I’ve done two this year, or no, sorry, last year. But, you know, I know that there’s really, not really very much wrong with me , you know, in the great scheme of things.

Mmmm, yes, so kind of comforting to have that extra information.

Yes, very comforting.

I suppose there was another angle for me as well, which I hadn’t mentioned earlier, which was that I had been diagnosed with a bit of atrial fibrillation a few years back. And I suppose there was, it was sort of a way of getting another check to see if there’s, if that’s emerging as, you know, a large issue, a larger issue. And it wasn’t, but there was that sort of aspect to it as well, sort of [laughter] using it as a sort of a free medical consultation, if you will, yeah.

I don’t think you’re alone in that, actually. I think a number of people kind of see these research opportunities as a way not to have to bother the doctor but to get something extra.

Well, the one thing I noticed when I bothered the doctor about this atrial fibrillation thing is that it’s, it triggers a bunch of formal responses. All of a sudden you have to declare it on insurance forms, and all these sorts of things. And you know I was under, I was more in control of that aspect – I feel, anyway. Also the doctor, my doctor did get a copy of the results too.

But I think I’ve just been looking for an opportunity to do something, while I was still healthy, that would help, and, you know, if I’m lucky it will have some benefit for me when I’m older. But that wasn’t, it was just because I could and I felt I should. So that was one part of it. And then the other side of it is just an awareness – as I say, my dad died in his 50s of heart disease, and high cholesterol runs in the family. An aunt died of it relatively, well, I think in her 60s. So it’s just I’ve always kept an eye on my, I’ve always been told to keep an eye on my cholesterol and going along to something like this – I do get medicals from work these days and they do quite thorough medicals on you and give you blood tests. But every opportunity – again it’s the scientist and the engineer – I sort of, Well, if, if they measure it like this over here, what sort of variation do you get in all these things

One, I mean there was some, or has been a little bit of personal gain, if you like, from this, because they do give you the print-out of your various measurements and bits and pieces. And actually my blood pressure was quite high. So I have followed that up. And, you know, it perhaps would have come to light anyway, but I found that quite useful. And it was nice to have, to know what my bone density was and my lung function and those sorts of things. It was quite interesting to get, to get that listing. So there is something you can take away from that, yeah.

And you get a print-out of your results, which is a limited number of things that they feed back on. But it includes your height and weight and body mass index. And it has at the side of it a list of whether that’s good, or not very good, or very good I suppose, so that you get a little bit of feedback, which is actually quite a nice thing to take away.

And with the blood pressure, did it say anything such as, We would suggest you talk to your G or?

The nurse who took it said, That is high. Your blood pressure is quite high. You should be aware of that And I said, Do you think that it’s high enough for me to talk to my GP And she said, Yes And then when I got the print-out it just said, Very high However I have been going through a very stressful time of my life, with my mother moving house, so it may be that it will settle down. But at least I know, you know, I took that information and followed it up with my GP, and I am now being monitored. So that was, that was a good outcome for me to have that and, you know, it’s useful to know what, whether there are issues and problems with those areas. But they are very specific about it not being a proper health check, that you mustn’t assume that this is a, something that is the same as a full health check, and that they won’t feed this back to your GP. it’s up to you if you want to take it to your GP. So I think that comes across very clearly, that you’ve got to be aware that this is just, you know, some information to feed back, but if they find anything, they wouldn’t feed it back to you. So, you know, I, yes, that was very clear to me. So it was a really interesting thing to be involved with. It did take me half a day to do it, but that’s okay. And, yeah, I mean there’s an awful lot of information there. And I suppose in terms of how it’s used, I presume the tissue samples are most useful if they also have some personal history details attached to them. And although maybe anonymised, there are various bits of information that would be necessarily attached to that in some studies. And I would hope that -and I am confident really – that this will be respected. it’s very public. This is a big, you know, high-profile bank and I think if anything goes wrong it will hit the media [laughs]. And I, well, I’m sure it is well regulated. And I shall, you know, be very interested to see how it pans out.

But so doing the food, but going back to the food diaries, it’s as interesting for me to write down what I eat as I think it is for the people that are studying it. Because every sweet you eat you write down as well, so like one boiled cough candy, [laughter] and it’s amazing. When I looked through it I thought, Goodness Whilst I eat, [pause] I seem to graze all day, I more than likely don’t eat huge volumes of anything. And again I found that really interesting. it’s a bit of a pain measuring stuff, but again, a bit like when you’re on a diet many years ago, you actually get to know what something weighs, so like, you know, I know just by putting a little spot of milk in my tea that’s less than a teaspoon, you know. So, and it’s measuring those sort of things. It was interesting. And I have been thanked, specifically thanked for doing such a good food diary, which was nice because, you know, it does take a bit of time.

Did it surprise you when you looked at it?

Yes, yes it did. The main surprise, though, I think was – well, they say, don’t change anything you do However, I think human nature makes you. I can, at work we have lots of cakes and lots of sweets. it’s always cakes and sweets in offices, isn’t there? And if I have a cake, you know, if there’s cakes there because of a birthday I will have a piece of cake, but if there’s sweets in the office, I mean, you just sit and pick them up as you want them. When I was doing the food diary, I actually was sat there one day and I can remember doing it, thinking, Oh, I’ll have one of those sweets And I thought, No, don’, and I thought I can’t be bothered to write it down, so it almost makes you think, maybe as a training programme for other people who are obese, say to people, Write down everything you ea, because it makes you conscious of what you’re doing.

Absolutely, and another comforting thing is the fact that they wanted the family to be involved. You know, it wasn’t just my problem. I live in a family unit. I’m part of a day-to-day process, and the family should be as part of this as myself just being there on my own. So some of the things we’ve done, my wife has got involved in, some of the clinics we’ve attended, we’ve taken my daughter too, because she’s wanted to ask questions and understand it. So my son hasn’t so far. He’s sort of rather pushed it aside and just feeds on the information he gets from home.

But the group at [city] have been great. They, they’re willing to talk to anybody and involve anybody and so, you know, it’s nice to be able to give something back.

I think you feel – one of the things I think you feel when you’re diagnosed with cancer is your lack of control, your loss of control. You – I’m in a job were I control an awful lot of things, I control a lot of things that go on, I control a lot of people, a lot of processes, a lot of systems. And suddenly something is happening to you that you can’t control, and I think that is a horrible, horrible feeling. And I think that you have to build up a team around you that are sort of like Team Karen that are fighting for me to survive. And that’s your friends, it’s your GP, it’s the people at the hospice, the day hospice that I went to, it’s the people at the hospital.

And I think if you can build that up and feel as if all those people are rooting for you, I think that it makes you feel as if you’ve got a little bit of the control back. So I think that’s just a way of looking at it. I’ve probably not looked at it that way before, but it’s a good way of looking at it, that you’ve got a team around you helping you.

And I think you also need a mentor at the hospital. I think you need to build up relationships, and not just be a number, and I think that by being on a trial you end up being a bit more of a person and a bit less of a number, and I think that’s really important. And if I can do anything to help, like this interview, in order to help me get better treatment I will. If it helps other people, great, but I’m selfish and it’s me.

You attend a lot of conferences?

Yeah, and stem cell research is talked about and explained and it’s, you’re made aware of the need for it, and it appears to be the way forward.

Where do you go for conferences? Where all over the country or?

Yeah, you tend to have various invites posted to you, and very often I will go to the majority, depending on distance, and they will be either overnight weekend events or one-day events. And you have scientists, professors, doctors and so on and so forth speak and explain, which is extremely helpful and interesting.

Do you think taking part in the research you get better access to some of that research information as a result?

I think yes, because I’m always one for asking questions, because I like talking and explaining and making people aware of MND. It might be by wearing a t-shirt. It might be by , in fund-raising collections when someone says, What is MND I need to be adequately able to describe in, at the very minimum, layman’s terms but, at the very most, professional terms, what MND is. And people show a great deal of interest in that. And so I’m constantly asking my specialist and other people questions that I can pass on to people who ask me.

Yes, they were very, very honest from the very first conversation we had with them. They are a medical research team that are working within a hospital to a) look at your own sort of personal health situation now, but take data and information beyond that to help them with their research. Yeah, they were very open about these things. I mean they explained to us that they were involved in the Medical Research Council. They explained to us that they worked within the NHS because that was the best way that they could keep up their medical practice, whatever the right word is, but as doctors. Yeah, no, they were absolutely honest about everything. And very truthful about, you know, how MND was a very difficult illness to research, and they were very honest about the lack of knowledge they had on it. Yeah, no, they were, they were excellent and I can’t fault the team at all.

I mean, one of the things I think for people taking part in medical research is often the fact that they feel they’re getting sort of almost extra-special care because they’re working with this team that’s right at the forefront of what they’re doing. Was that something you felt?

Right Yes, I suppose I did in a way. I mean, when we went the first time they didn’t actually say to us, We’ve got all these different research programmes going on. We’d like you to join them They were very honest with us and said, Look, as time goes by, would you have any problem if we made contact with you about things that we do outside the clinic And it was done very well. And every time they asked a question they always made it quite clear that if it was something I was uncomfortable with, if I said, N it was never going to be a problem. And likewise if I went ahead with anything and I wanted to stop it, it would never be a problem. It would never do any harm to my situation, and they would fully understand.

Well, I was thinking that maybe the place to start would be that when I was diagnosed with MND that I found having a chronic disease that was completely, there was no treatment for, it was incurable, a terminal condition, very strange, because I’d been an acute physician and I was used to being able to deal with things, which – one always hoped for a positive outcome, and obviously not everything in medicine is positive, but you can do something about it. And so the thought of just sitting, waiting for the disease to take over seemed very alien. And so I thought the only proactive thing that I could do about the disease was maybe to take part in any research. I did discover that because my variant, which is progressive muscular atrophy, is rare, that actually my usefulness in research was pretty limited, and the majority of trials, for example, that occur, not very frequently but if they do have a drug, then they generally do not go for the rarer variants, because they’re trying to find a speedy result, really.

So I was fully expecting not to be able to take part in any research at all, but when I, fairly soon after I was diagnosed with Motor Neurone Disease – actually probably a year later when I had to stop work – I wanted to do something, and I read about the MND DNA bank. And it said they could take blood from anybody, and I thought, Well, at least that’s something I could do I wasn’t near a centre that was taking blood. I think when I looked into it, I think there were only two centres that were actually had research nurses taking blood. But I did contact them, and in fact a month or so later a research nurse came down from one of the centres, and just to take a blood sample, for it to be used in a DNA Biobank, and I just felt that that was something proactive that I could do. I also discovered that they were keen to have any siblings who might be interested, and if there were any parents still alive then that was useful too, and both my parents are marching on into extreme old age and very healthily.

So I was quite surprised when the research nurses were prepared to travel quite a long way to get, go down to [City], which is where my parents live, and collect samples from them. And it happened to coincide when my sister, who actually lives in [County], was visiting, so they collected samples from all of us, and they’ve all been added to the bank. And whilst I appreciate that it’s probably not as useful as if there was a familial form of MND – and mine is very, it’s definitely sporadic – but being able to contribute and have something there that researchers can use for now and in the future was something good to be able to do.

There’s a benefit to me, because they pay you money, you know, and in fact I can honestly say the first time I did it, I didn’t realise. I mean, I didn’t realise they pay you. And in fact the one thing I do like, they never, in all the letters they send you any mention of money is always at the end. And whether – maybe it is done deliberately – but it certainly does set your mind that you think, Well, I’m doing this because I want to, and not because I’m going to get some money out of i, because I’d hate this to end up like the Americans. [laughter]. I mean, I do blood donoring. I mean, proudly I’ve just done 51 now, so I’ve had a nice little certificate for that, and it, I suppose it goes along the same lines, really.

Well I’d describe my own religion as I’m a liberal religious humanist, and I think that does affect my thinking. So it’s a moral stance, but I’m also an incredibly nosy person [laughs], and so just the curiosity factor of what’s going on in these research projects. And, and it does make you feel very special and very pampered when you do these kinds of things, and the researchers express their thanks to you. And I don’t actually know many people who have done this kind of thing themselves, and so I do feel, I do feel a little bit of one-upmanship, you know, and even, even with giving blood people say, Oh, you’re so brav, which of course you’re not. Yes, it’s a special thing to do.

So I’ve always been interested in my body weight and my body mass, and I have seen it go up and down. So, and I’m always keen on information and data. I always record when I exercise, record my weight and anything that gives me some more information to go on would be interesting.

So I went along, and they just did some blood samples, a body mass index and some various tests. And then they – I had hoped that they were going to do a body mass scan, which was one of the things that was suggested as being part of that study. In the end they didn’t need any extra volunteers for that one. So they did that testing, and came back to me in a nice little letter saying my HDLs and LDLs or my triglycerides, or my – I can’t think what you call it now. What’s the real name for it? [Checking information sheet] Cholesterol levels, all my cholesterol levels were fine, which was again one of my interests in that.

And then towards the end of last year, 2009, a second invitation came to one on the metabolism of adrenaline, which despite it being equally invasive didn’t, it appealed to me. It was possibly the sports side, you know – adrenaline and all that, that’s good for you, it’s, I can see the benefits. So I thought – and I generate plenty of it myself, so what can be the problem with that? So I volunteered to do that one and went down for some initial investigations. I signed up and went through a bit of a pre-screening, and I went down in January this year to do a pre-screening or to do some physical measurements.

And that was the opportunity, they actually put me on the scanner and did the, scanned an X-ray scan for body mass and body fat, which I thought was fascinating. I thought it was really interesting to see a colour map of where the fat is on my body and just, Oh, yes, that’s where I’ve got to put a bit of exercise in at the gym at Things like that.

I think it’s very important, because you get to know the staff, and I suppose in some way they’re a bit like, they’ve become like friends, you know [laughs]. You get to know them, and you know, I quite often think, Oh, that’s quite nice, actually Because I’m going up to see them and you chat and you catch up, and because you can be there for half a day or a whole day, and it can be quite nice because sometimes you’re just lying on a bed, you know, once they’ve got everything into you, you know, I’ve sat and read magazines and they put the radio on. And there are other times with the research, you know, you’ve got to concentrate more on different things, but quite often you’re just, you know, it can be quite a nice day [laughs]. Quite relaxing, you know.

[laughs] And at, are the research nurses who are there now, have they been there quite a long time?

Well, the ones that I know, yes. Yeah, they have. I think I’ve known them from virtually at the beginning.

Yeah, and what is it about their manner that you, you know, if you were trying to encapsulate what it is that they do so well.

Well, they’re very friendly.

Uh-huh.

And nothing’s ever too much trouble, you know. Sometimes you can be all wired up with all sorts of different stuff and, you know, you think, I really need to go to the toilet And, you know, you think, Oh God, what a shame, they’re going to have to disentangle me from all this stuff it’s never a problem, you know, and they’re always, you know, they’ll ask you, you know. They always look after you and make you feel very comfortable.

Yeah.

So I’ve got no complaints whatsoever. You know, they have looked after me very well.

The benefit to myself wasn’t the original impetus, for example to become a blood donor, but I soon became aware of the quid pro quo, the benefits that you get back. And because I’ve had a problem with anaemia through all of my adult life, of course going to give blood regularly was one way of keeping an eye on that. And when I took part in the MRI scans looking at blood oxygenation levels in the heart, I’ve always had a faint worry in the back of my mind that my father died of heart disease, and he was already ill with heart disease by the time he was my age, and so by having a free MRI of my heart I got a free health check. So I am aware of the benefits for myself, though some of them there’s no immediate, some of the research projects there’s no immediate obvious benefit other than, other than a warm fuzzy feeling that you’re doing something which contributes to health care and research generally.

Well, I must have just read what they sent to me, and because it was only something like taking your height and weight and a blood sample, I thought, Well, that’s not a big issue, you know, if it’s going to help them, you know, I can quite easily go along, takes half an hour at the very most And, you know, it’s not any different from going to give blood, is it? In fact, it takes less time. So, you know, I just felt that some good would come out of it.

Was there any part of it where you thought you might personally benefit from taking part?

Not really. I mean, there’s no history of diabetes in my family. There is on my husband’s side, so maybe that influenced me slightly. But I certainly didn’t feel that I would ever be at risk of having diabetes myself so it was never, not for me.

So the, I mean, the information sheet was quite self-explanatory. I mean, it basically said what they wanted to use the stem cells for and said that they wanted it for research to – well just for research purposes, I think. It wasn’t very, it wasn’t specific as to what they were researching into, but from all the reading that I’ve done and I sort of know what they’re doing research on stem cells for, and so I didn’t have any problem with that whatsoever. And all they were asking to do was basically collect the placenta – well, the umbilical cord, because it’s cord blood – once you’ve given birth, and you give a blood test and that’s it. And it’s very, very, there’s no intervention, there’s no – nobody’s harmed. There are no fetuses aborted, nothing like that, and so I didn’t have any objection to it whatsoever. I thought, Well, you know, they’re only going to chuck it away anyway, so why not do it