So tell me how – so you’ve been diagnosed with diabetes. At what stage were you asked to get involved in this trial?

About three or four years after I was with treatment. One of the reasons was that it’s important, your question, because I always believe in science and research in medicine. So when it was discovered, it was such a shock, that I was sure I could die any time. I was really thinking that I could die any time. I didn’t know about diabetes properly. But I said to my doctor, Doctor, if you know about any research I will be pleased to participate

Well, anyway I said to the doctor, I offered myself to the doctor. And so when he was, suddenly from independent areas I received a letter if I wanted to participate in, in research. I did participate. And then I start to, probably I have done six or eight times research in general.

So the diabetes one that you took part in first.

Yes.

Was that the GP who wrote to you, or the hospital?

He report, he report to the hospital – not report – but he informed the doctor that he had a patient who had offered himself for research.

What were your main reasons for wanting to take part?

Support medicine and general research. Happy if it can help me personally, but happy as well to, to help, to develop medicine to general, to the general public. So it’s one thing altogether, the idea is just one. And I always thought about that. So it’s with pleasure that I can participate and give my own experience.

My main motivation for taking part is to help generate knowledge, which is why, I think, the results have to be into the public domain. All of them naturally concerned conditions I had – well, the azathioprine one was really, you know, I didn’t want to be poisoned [laughs] for something that was not going to do me any good. I’d like to know that it was doing me good. I find the health professionals, in a, in a disease that comes and goes, it’s an incredibly powerful illusion – you feel terrible you take something you feel better. And to join those two up in your mind – and if you look at all the crank remedies out there and all the alternative treatments, where there’s a lot of alternative treatments and herbal treatments, they’re all for diseases that come and go -eczema, rheumatoid arthritis – all these diseases that come and go naturally. And of course because people get what I thinks a powerful illusion of benefit just because they would have got better anyway, and I think it fools the medical profession too. People, I talk to colleagues and doctors. They have a much greater sense of how much good they’re doing than the evidence suggests is true, you know.

Yeah, so mostly less about personal benefit, but that arthritis one was much more personal motivation that you wanted to–

Yeah, that one was for me personally, although I do think N of 1 trials* could add to the sum total of knowledge, if done in a, in a co-ordinated way…But no, and I, and I think, I think it’s a, it’s a social contract. You just think of all the diseases out there. If every treatment was to be delivered as part of a trial against the next possible better treatment, we’d, our knowledge would advance tremendously. We’d all do, we’d all be so much better off from collaborating.

*Footnote’ An N of 1 trial is a clinical trial in which a single patient is the entire trial. Random allocation can be used to determine the order in which an experimental and a control intervention are given to the single patient. See Amanda’s other clips for more detail (Interview 22).

I think one of the things that I actually find quite irritating is that people – I understand that money is, is an incentive. I want good health. I don’t need rewarding. I find it quite off-putting. But I do understand that in order to get volume in trials you’ve got to have some kind of incentive for people to go into them. And if they’re not aware or they haven’t got health problems of their own, then I can understand how it’s come about. I’m not comfortable with it at all.

So you’re thinking about the ones where it’s the first time they’ve tried it out in people and they pay people to come along and take part.

Well, it isn’t only just first time. I mean, quite a lot of them are well advanced in the research so, no, I just, I’m not comfortable with the idea of being rewarded to do something which I do because I think I should be doing it. it’s morally right.

If people don’t volunteer, they’re never going to make any progress. You’re going, we need to find out which is the appropriate drug and if the majority of doctors are prescribing something else – it’s quite helpful as well to know about what there is available, which you don’t know immediately you go in, but then, of course, you become informed, so yeah, yeah. it’s important that people do volunteer, if they can. I mean, I was in a fortunate position in that I’d already taken early retirement from education, so I, it wasn’t a commitment that was going to take money out of my pocket or interfere with a job. I still would have done it regardless, but it’s easier that way, mm.

Well, all you can say is you’re doing your best for, to help other people and mankind, and we won’t get anywhere if nobody volunteers for anything. You know you’re in good hands, whoever’s looking after you will make sure that nothing well, hopefully [laughs] nothing too awful happens to you. And it may give you some benefits. At least you know in your mind you’ve done something to help people. And if there aren’t that many of you with the illness et cetera it’s very important you volunteer. Yeah.

Well, when the letter came through the door and I read it, I nearly threw it away, to be honest. And then I stopped and I looked again and I read it again, and I says, This is prostate cancer. This is what my brother’s got you know. And I thought , Well, I haven’t got it, as I said earlier, But if I go round there and I give them some blood, they might find something in my blood that either could help my brother or give them more information of why it’s in the family and different things. I never ever thought I had it. And that was one of the reasons. If my brother, I think if I hadn’t have known somebody who had had prostate, I would have probably not bothered, you know. And, as I say, I went and I honestly thought that they would say, Well, you’re fit, you’re all right you know. But I wasn’t.

Has it sort of changed your views at all now about medical research and whether people should take part?

I think it depends on the case and, you know. But I suppose it has in a way, because if you can help somebody, if something helps somebody, you know, even if it’s just giving a bit of blood or a bit of advice, you know. It’s, I think they should have more clinical trials, you know. But it’s all money, isn’t it?

Why are they important? They’re important because you’ve got to establish whether the new treatments or new regimes of treatment are better than the existing therapy, and for every new therapy that’s better there’s probably one that’s the same and another one that’s worse. So you’ve got to find out whether the new one is an advantage or not. It’s not just a marketing thing – it’s got to be done scientifically. So for any new treatment, be it a tablet, an op- – what amazes me is that operations aren’t subject to clinical trials, really, or haven’t done until recently, and certainly the treatments in my discipline aren’t.

But drugs were, and this was a drug so it had to go through a clinical trial. So I think they are really important from that point of view. Why did I want to take part? Well, there’s probably no point in having a disease like that if you can’t get any good out of it. You know, at the end of the day it’s pretty, it’s not a good thing to happen when you’re 33, and if there’s anything good that can come out of it, well, fine.

Quite often I hear people talking about the good that may come out of a trial being in terms of personal benefit. It sounds as though that wasn’t your perspective.

It’s, well, it’s not personal benefit, because you in the trial don’t really benefit from it – although there was some evidence at the time that people in trials, whether they’re in the winning arm or the losing arm, do better than people outside trials because of the added extras, the extra attention et cetera et cetera. But I think more recent studies have shown that there probably isn’t as much difference now as there used to be. Whether that’s because – well that’s probably because the routine care – or I would like to think it’s because the routine care has improved and people are, in clinical trials, aren’t as different, and labelled as different. But I suppose that was in the back of my mind, that I hadn’t really got anything to lose and… there was something to gain from it in the added information, but since I was diagnosed I’ve had two friends who have been diagnosed with virtually identical conditions and they’ve both had the tamoxifen and Zoladex, so I suppose that trial has helped my peers, if you like, who have been diagnosed ten, twelve years later.

FOOTNOTE’ There has been some evidence that people who take part in a trial whatever treatment group they are allocated to – have better health outcomes than people who do not take part in trials. This is known as the ‘trial effect. However, more recent reviews of the evidence have shown no significant differences in outcomes for people given similar treatments within a trial or just as part of their normal care.

I do have some mild side effects. I get intermittently every day a little bit of nausea and stomach discomfort but it’s not terrible. And most of the other patients also have had only mild side effects. A few people have had more troubling things.

In the long term, nobody knows what the effect of the drug might be, so I’m quite interested in staying alive for long enough to see what the long term side effects are. And I’ve got strong reasons to be interested in that question, because I’ve got three daughters and they’re at risk, and so it would be nice to know whether they should consider taking the drug, you know, if something goes wrong, or even taking the drug prophylactically to prevent disease from ever developing. That’s something that would not be contemplated now.

Because we don’t have the evidence about long term side effects, and as I say, it’s potentially quite a worrying drug.

But it’d be, you know, if I live a good long time then that would be a bit of evidence that maybe it’s a good idea to start the drug treatment very early and maybe even before any disease is apparent.

Have they been tested for the mutation?

No, they haven’t. They know the situation, but we thought, my wife and I thought that they should be left to make their own decision about whether to get tested.

So they’ve not had tests so far.

Do you think it’s important for people to take part in research projects?

I would say yes. Because, because of that they get to know how not to or a way how to treat certain conditions, certain sicknesses, certain disease, yeah.

So even though it didn’t seem to work in your case?

Not wholly [laughs]. I think partially. I think it worked partially, not wholly.

Because that’s, that’s quite interesting, because you, you went in hoping that you would benefit.

Yeah, totally, uh-huh. I wished that would happen.

And now, looking back, actually even though you didn’t really benefit a great deal, you’re still quite happy to have done it?

Yes, I am, yes. Mm.

My experience, from my experience, I would say, well, if, if you’re asked to take a trial for whatever purpose, I would say, Go ahead and do it, yeah It can only, good can only come of it, in my estimation, yeah. And that is you’re helping yourself and help other people who might come after you.

How important was it to you thinking about helping other people when you decided to take part? Was that part of your decision?

Not really. No, my decision was personal, really. But I know that what is good for me is good for the goose or the gander as well. So [laughs], so from my point of view if I, if I could , there’s somebody else who might need the same type of treatment to make them good. So it’s all right.

Anyway, I later developed ED, erectile dysfunction, and was referred by my GP to the same specialist who had been the urologist who had dealt with the prostate problem. And as he knew me, and was at that time being asked by the drug manufacturers to take on a trial of a drug which was supposedly going to be of benefit to people with erectile dysfunction, he asked whether I would be prepared to be part of the group on whom it was to be trialled. He explained very carefully the possible side effects, which were manifold, and explained that it was a double-blind trial, which meant that neither he nor I would know whether or not the medication which I was given was in fact the real thing or a placebo. I was quite happy to accept this risk of possible side effects. Partially the reason for taking the trial was self-interest in so far as it could be of benefit to me, and partially it was because I know that medical advances cannot be made unless people are prepared to enter into trials.

I know that there have been some very, very nasty problems – no names, no pack drill – but this was something with which I was prepared to go along.

it’s something which I realise is extremely important. I know that great strides are constantly being made. And unless research is tested on human beings, as well as on such lab animals as are necessary, the results aren’t going to be totally fully understood. Clinical trials are necessary for all drugs. I have been the beneficiary of drugs which have previously been trialled by other people, and if I’m in a position to do the same for the next generation then there’s no reason at all that I shouldn’t do so.

I found the going into hospital for the radium, they did ask me, which I found was funny, was I disappointed that I wasn’t having the chemo as well? I couldn’t understand that one. But I think with the research, with it being already proven things that had cured cancer I accepted the INCH* trial, but otherwise I very much doubt whether I would have. No matter how much literature I read, if they had told me that I was having something that was untried, I think I would, really wouldn’t have done it. You know, if it had been tried on animals – and I would have had to be really desperate to follow through with that.

I felt that both of them had been used and proved to be successful on many people who had cancer, so therefore it didn’t really matter to me which I had, providing it cured it. You know, I think you’re willing to go to any lengths, and I also have always felt that you can’t just take – you’ve got to give back. So this trial I felt, Well, at least I could give something back. You don’t get anything in this life unless you give something back, do you? So really I would have preferred not to. I understood them not wanting the chemotherapy because the side effects are awful. I understood that, but I really, that wouldn’t be in my head. Like them saying to you, Were you disappointed? I couldn’t understand. Were you disappointed that you didn’t get the chemo and the radium? And I thought at the time – well I think anybody would think – that I’ve got the better choice, just the radium.

* INCH = a trial comparing INduction CHemotherapy followed by Continuous Hyperfractionated Accelerated Radiotherapy (CHART) with CHART alone.

Well, my first thoughts were that I was pleased that that this trial had been organised. Ovarian cancer is known as the silent killer, and the problem with it is, that by the time people have symptoms, it’s often too late to do anything, so this is clearly an area where some kind of effective screening could, in theory, prevent many deaths. So I was pleased that the trial was happening. And I felt that I ought to take part, that I had a moral responsibility to take part. However, my second thought was, I don’t want to be in the groups that are having these particular approaches to screening. And that’s quite interesting, because, as somebody who has actually, you know, organised trials myself, I know that the main problem with people refusing is actually amongst people who are randomised to the control group, who are dissatisfied and want to be receiving whatever intervention it is, and my attitude was different. I wanted to be in the control group [laughs] and not in the two screening groups. So I’m not sure what I would have done had I been randomised to one of the screening groups. I think I probably would have dropped out, and I would have argued to myself that since most people, as I’ve just said, most people who drop out drop out for the opposite reason, I would just be balancing numbers.

Can you imagine yourself in the situation in the future where you were diagnosed with something and how you would feel about having that decision?

Yeah. I would feel that I needed to check out the statement, We don’t know which treatment is best. And if that was really true, then I think I would say, Okay. It’s easier I think when, you know, what your – [sighs] well, no – I mean when the choices are between different treatments that are much the same in terms of physical side effects or inconvenience or whatever. If there was a big difference, as I felt there possibly was with the ovarian cancer trial, then I think it’s more difficult. You know, if being in one group means that you’ve got to go to hospital every month [laughs] and have something which hurts, as opposed to going every six months and having something that doesn’t hurt, then it is a decision with consequences.

I think my appointment was probably about ten days after diagnosis. And it was at that time my husband and I went up to the oncology and they brought it up then and he just did a diagram for us and told us what was involved. And there again, I thought, Oh, two weeks, that sounds good. [laughs] But this actually finishes at the beginning of September.

Were you happy with the amount of information and how easy to understand it was

Yeah. It was, you know, like I say I didn’t have to decide whether to have one particular treatment compared to another. It was just a timing thing, and it seemed, you know, it didn’t seem like a huge thing. I’m having the same treatment, and I’m responding well to it and I think that’s – so I didn’t feel that I had, you know, had to come home and mull it over or think about it or anything like that.

So did you decide on the day?

Yeah, yeah.

Sorry.

Well, I told them I wanted the two week one but he said, Well, it just goes into a hat so we have no control over that at all. And then the research nurse phoned in the afternoon and said, Unfortunately, it’s three weeks. I said, Oh okay, never mind. And I was really quite upset about it, because I really thought, you know, my stepdaughter’s getting married in August and I thought, Well, it would just be nice to get it all done. But a lot of people have since said, you know, I know a lot of people in the NHS and they’ve said, Actually, it can be quite gruelling. But I’ve responded so well I don’t think it would have been for me, but anyway, it doesn’t matter, and I am on the three-week one and I’m completely reconciled with that now. So it’s not a problem.

And when you were thinking about whether or not to take part, what were the main factors that made you want to take part?

Well, research, I just think it’s so important, and they’ve already done the trial in Germany and it’s showing that the every two weeks is, is perhaps better.

And it sounded as though you had quite strong views about almost a duty to take part in research if it’s offered. I mean you said, Why wouldn’t you? as if it’s a kind of–

Yes, yes I mean this wasn’t any, it wasn’t going to change anything or it wasn’t going to make anything worse.

Do you feel–

It wasn’t going to be obstructive or invasive in any way. It was going to help a lot of people like myself, right, research* only more important, because they’re actually helping people rather than solving obscure mathematical problems like I do. So yes, it was pretty obvious to me, yes, you can – I didn’t think about it this way, but now you’ve called it a duty, yes, maybe you could call it this way.

A sort of moral kind of–

Yes yes.

–level to it.

Yes.

Yeah, I’m interested that you say it wasn’t going to be invasive in any way.

[laughs]

[laughs] Hearing the account of your surgery.

Well, I mean to say, well, if you come to think of that this is not the – I mean compared to, this was the lightest injury that, among people on my ward, both times. I mean people had broken spines, people had multiple injuries. I mean maybe if I was in really serious trouble, you know, in really serious pain, I wouldn’t want, you know, any extra hassle. Maybe I just wouldn’t be able to think straight [laughs]. Or maybe – but that’s another reason, because, well, it’s a, it’s a chance to help medical science and people who do medical science. And it wasn’t invasive – not just the trial itself wasn’t invasive, but I mean I was lucky enough not to get into more serious trouble and I mean.

Yeah.

That was, that was the least I could do, yes? And it wasn’t going to give me any extra trouble, and the trouble wasn’t comparatively serious to start with.

* Footnote’ In referring to helping ‘people like myself, Alex means fellow scientific researchers rather than fellow patients he is a maths researcher.

And to be honest I don’t think my husband would have minded either way. He wasn’t particularly interested in the intellectual side of it. He was interested in the personal side [laughs]. And if it was helping he wanted to go on. And he wasn’t going to accept that it wasn’t helping unless it was really clear that it wasn’t, you know. So I think there’s very different reasons why people might stay engaged or want to be engaged, depending on whether they’re ill. I mean in my case I didn’t think I had ovarian cancer, so a screening thing was entirely to be altruistic, and because it wasn’t going to involve me in great pain and grief, or theoretically wasn’t, I was perfectly happy to do that. But I think if you’re actually ill, the situation is quite different. What your choices are very different.

I thought, Well, you know, I’ve been asked. There’s no reason why I shouldn’t. it’s obviously a sensible thing to do. And it’s the right and proper thing to d – so at some rather low level, an ethical thing to do. I think people would imagine that it’s unethical to bounce you into something at a moment when you aren’t in a position to understand the choices. I have to say I think when you are actually ill, you are in a very poor position to make any decisions of that sort. So in a way people may be very often pressured by their own circumstance into taking part, in situations where maybe it’s not the most intelligently set up research, or the most well-framed, or the most relevant to them. But I think one can say that there’s, you know, we all have, we all owe something to the Health Service. So if one can help and do something in that respect, there is a sort of a duty, as sort of the flip side of our right to free treatment. Difficult to put that into people’s individual personal contexts once they become critically ill.