I would say that to look at your day and see if there is anything else more important, and – I can only speak for me – there isn’t. So no matter how long, how difficult it may or may not be, it is vital and essential to do the research, do the study, and it’s the only way progress can be attained.

Well, I think just an encouragement to not dismiss it out of hand. And I think certainly with Biobank, you know, because I know a lot of people who were invited, because, you know, friends of mine were invited into this, I know a lot of people who turned it down without giving it too much thought, really. Because they said, Oh, I haven’t got time for tha or, No. It smacks of Big Brother having all my details and stuff But I think you need to think about these things seriously. And I think it is important that we learn more about diseases that are likely to – well, kill people – but also to leave people with a, to leave people with a poor quality of life. I think that any information that can help us to live healthier lives, because we’re all living longer, and we’re living longer with a whole variety of disabling conditions, and I think anything that can help that, if not for yourself then for future generations, your children, is really important. I, my father had two strokes and survived both of them, the second time in an extremely poor state. And I know that the first stroke he had was at a time when the responses to stroke were to wait and see what happens. And I think that we know so much more now about the speed at which you have to intercept and do something, and I feel that he would have had much more chance of – certainly after his first stroke – of having a better recovery. And that’s down to people doing research and using that sort of information to help. And I think that has to be a good thing. So I think people should be involved in research. I think it is a community duty, really, to consider and to get involved in research that is going to help everybody.

I suppose as a message for people that are being asked to take part in the studies, I would encourage them to do so, partly because it’s of benefit to mankind, you know, to improving the treatment that everybody gets, and also I think it has benefits for the – in some cases – for the people that are taking part in the studies, because if they join medical trials, for example, they may just be lucky and they may be able to benefit from something 5 or 10 years before anybody else. And I think also that they become part of the team, almost, and they may end up getting better care as a result of that. And that’s, if you like, the payback for joining the trial. And I don’t think that’s a bad thing. But I think for me personally, even if that wasn’t available, I’d still do it from a more, from a caring viewpoint, from the viewpoint of improving things for people in the future – for my family, for other people’s families. I mean, that’s perhaps the way to look at it.

And the same with tissue samples, I guess?

Oh I think any kind of samples, blood, tissue or medical trials related to drugs, whatever, I think the same sort of thing applies, I think. I mean, giving tissue samples, or blood samples, doesn’t really cost you anything, because they’re normally linked to the treatment that you’re already having, so it’s not as if you’ve got to go into hospital for special surgery or to have extra blood taken. That, I think, would probably put most people off, but if it’s just being done as part of the treatment that you’re already having, then it’s almost unnoticeable.

And the ultimate thing is cancer, you look at cancer. Cancer’s come a huge way, a long, long way. There are still many people dying of cancer but there are many more people that are still surviving it now. Why can’t that happen with MND at some stage in the future? And if we don’t allow the medical profession to make this research and undertake experiments on us as, you know, human beings, we’re never going to find out, are we? So I’m, I’m a great believer that we give them as much time as possible. Yes, we don’t want it to get too much that you can’t go out and enjoy life as well, but they’ve never, ever been like that. You know, it’s from time to time, Can you come and visit us? Can you give us a day and do things we want to do with you Yeah, do it. Great And have lunch on them [laughs].

I just think as long as I can help somebody elseLook at your treatment. If it don’t work, just get on with it. But please give to research. That’s my, that’s my strong message. Please help people. Give to research. Without research, you wouldn’t have been in the front of the camera. Without that camera, how do they research people? By speaking. Please give your time and your blood and your body, whatever. It doesn’t hurt. Because you’re always looking after somebody else. don’t think about yourself. Think about the future, your kids, children in the future. That’s my motto.

I think my biggest message would be to say that if you are, if you are or feel unable to read around the topic and understand what it is you’re actually doing, you shouldn’t be doing it. it’s really what you should do. Now if it’s a matter of clinical research because you have an identified disease such as hepatitis C, I still say you, it would help you if you could read around it and understand it. But actually to a greatest extent it’s quite a selfish one, and if they can cure you, great. And it’s unlikely – and I do say there, obviously there is a risk – it’s unlikely to make you worse off. It might make you feel poorly, but it won’t make you long-term worse off. Although hepatitis generally speaking has, it’s, the way it seems to act appears to be a very rapid onset and then down to a fairly quiescent state. And the current gold standard for treatment is actually very, is a current, is a good gold standard for the moment and will set most people up for a good, good many years of straightforward life ahead of them.
So

And the kind of biobanking research, where it is more —

Yeah.

I mean that’s more like being a healthy volunteer in a way, isn’t it? Because there’s no direct personal benefit —

No.

— to you from that.

No. Oh, yeah, I mean, have it, use it, do whatever they want with it [laughs]. As I say, was it five or seven years? I can never remember which it is, but no part of your body is older than seven years. So if they take a bit, it gets rebuilt.

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.

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.

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Well, I do. I mean I really like the staff that I’ve met up with. And even, because I’ve gone to quite a few of them, sometimes you will be with a different member of staff and one of the other nurses will pop in and say, Oh, I knew you were coming in today. I’ve just come round to say hello And it’s lovely, you know, that they make that effort, because I’m sure they are grateful that you go in, because they need people there to do the research on. But they’ve all been lovely, all been really nice.

I think you have to look at it. I think – we were talking about the placebos – and I think you have to look at is it sensible? Is it perceived that it is better for you to take part in a trial? Do you feel safe taking part in the trial? Do you trust them? And I think if you can answer all those positively, go for it. But I think if you have doubts, and there is a tried and tested way of treating your particular illness, stick with the tried and tested. I think it’s a balance thing. And I think to talk to people about it who have a modicum of knowledge, be it friends who’ve been through it or professional people, but you have to make your own decision in the end, and you have to be comfortable with your own decision.

And anything specifically about if people are approached about giving blood samples, tissue samples?

I think that’s personal choice. I think you’ve got to just make your own decision, and if you’re comfortable, again, if you’re comfortable with it, and you trust the people you’re with, and you feel safe with them, do it.

I would say that if you’re thinking about doing research then go for it, because actually it’s a very positive experience. it’s, it’s quite interesting. I think it’s this engagement – well, certainly with the study you’re giving up quite a bit of your time – but you’ve got this sort of two-way flow between you and the researchers, which is a very sort of positive experience, and I think there’s a great deal of satisfaction in feeling that you’re actually contributing towards something that might make a difference. And the other thing, I think, is not to have sort of too many expectations that what you’re taking part in is going to sort of change the world. it’s maybe a small piece of the jigsaw, but I would rather be a small part of the jigsaw than be sort of still looking at the box and not opening it. So very positive, I think, and take part.

Well, my message to other people is that you’ve got to learn to build trust with the people that you’re working with in the medical profession, and if you’ve got that trust, then go with them. You know, work with them and have the confidence of, of believing them and sharing and just doing everything they want I think a lot of people might be scared. Others may be very down and depressed because of the situation they’re in, and I fully understand that. I mean, I’ve had moments where you feel depression maybe coming on, but luckily, I’ve felt that I’ve had the strength to overcome that. But again, I’ve overcome that because I’ve been lucky that the medical teams that we’ve had around us who have always been there to lift us. And if they’re prepared to do that, well then I’m prepared to give them any time they want.