I’m not sure really whether I’m particularly helpful at a strategic level. I’m not sure whether – I feel that as a group we don’t yet know enough about what we have succeeded in achieving as consumers or users of research and participants. I don’t think we actually know how much our involvement is proving positive. But the consumer liaison group is now working quite hard to try and activate ways to research that, to find out, you know, How are consumers getting involved in research – other than as people on a trial, you know, but as helping to form trials, to sort out consent forms, to sort out descriptions, to shape the way research is going, to pressure for particular sorts of research? What are they actually doing and to what extent are they having an impact

This is the sort of research that we want to try and get funded and actually go into. Now, doing that research would interest me hugely, because I don’t think until we know that we’re in a very good position to actually say what we should sensibly be putting our energies in – what someone like me responding to an advertisement [asking for consumer representatives] can hope to help to influence. But I think, you know, this is, looks like it’s quite an energetic new thrust in the group, in the cancer group, which I hope will spread to other areas, actually.

And there was another thing that actually only came up at the very, very end, that I realised should have been being, information should have been being requested about it, which was the skill of the scanner. Because the very last person I had doing a scan was fantastic. She was really, really good. She had some very good techniques for making it possible to actually see the ovaries, even if like me you have a fair bit of gas and etc etc, one way and another.

Because a lot of other scanners had failed to find them easily, and then you have to do a lot of pressure to get rid of the obstructions so that they can see it and so on. it’s quite uncomfortable. She had some nifty techniques which didn’t involve any of that and which were really brilliant. She was slightly older than some of them, a bit more experienced, but I think she was just a better scanner. It would have been very, very sensible for them to ask about what was easy and difficult to experience during the scanning process, because they could have learnt something about how to train people better, which I thought was important.

The other thing that, that occurred to me on two occasions, which I don’t know how often it’s occurred to anyone else, but was disruptive and again rather badly managed, was on two occasions they found something that they wanted to investigate further. They said, you know, You’ve got to come back for another scan. We’ve seen something Now in both cases it was a cyst rather than anything else. But on one occasion, I had a phone number I was supposed to ring to deal with the appointment to come back and I rang up. And I was on a bus actually, it was a bus to Oxford, and the young nurse at the other end said, Oh, yes, you’re being called back. You’ve got to have an operation

And I was absolutely horrified, because that had never entered anybody’s description of what might be going to be a problem. And she clearly was again very badly trained. But there was no way for me to tell anyone that these sorts of things were going wrong. And by then I’d already tried sending off my letter and had the experience of not being listened to. And I felt all of that was actually pretty low grade for a trial that’s dealing with 200,000 women. So if even a small percentage of them are having my experience, it’s a hell of a lot of women who are being treated a bit cavalierly one way and another, which I don’t actually think is acceptable. So I would have liked to have been in a position to help people to get it better, because I wasn’t trying to say they shouldn’t do it. I was just trying to say, you know, I have a fair bit of experience with questionnaires. I’m a perfectly rational person. I can understand what things might be helpful to improve a situation Nobody wants to know – which I didn’t think was in the spirit of research.

As I think I’ve mentioned, they also have been very sensible at the hospital I’ve been to, to suggest to anyone who wants to, after their six years, they can return for screening if they’re anxious, because everybody obviously felt very reassured. If they were being screened and nothing was showing up, they were feeling good about it. And when the trial comes to an end, suddenly you, you know, like me probably most people hadn’t checked how often you would go on doing it. You began to feel it was for life by the time you had gone for six years, and then it suddenly finishes. And the hospital have said, you know, If you want, every couple of years you can personally request to come back and have another screenin, which I think is a sensible thing to be doing. You know, I think it’s, that is treating the people whove been helping pretty well. So
Did they volunteer that information to you? Or did it, was it a result of you asking?

No, they actually volunteered that in fact. I don’t know, I probably expressed a bit of surprise that the thing had finished suddenly and, Oh, gos, you know. But they, I think they actually mentioned it. I think it again was this excellent screening lady, to be honest. I think it was the, really the only first-class person I met on the whole trial who volunteered the information. Whether anyone else would have, I don’t know [laughs].

Well, there’s a lovely opportunity now with the National Health Service at age 60 to start bringing in the concept of, Why can’t we afford everything we want to do? We’ve moved forward so fast and so far and we’ve got so many treatments for so much and so on, but what we’re really after is a healthy nation, which is what the Health Service wanted in the first place. And, you know, here is the story, a simple linear story about what’s happened in various obvious illnesses. Make it visually and intellectually simple to absorb, and say, This is all part of your legacy. Your Health Service is here. This is how it got to where it is. I mean, I went to a lecture given on leukaemia by my husband’s consultant, which was a lecture meant for a lay audience but – or maybe not a totally lay audience, but one with some interest and some knowledge in medicine. And it described the development of treatment for leukaemia from sort of the days when you dished out arsenic and, you know, how a lot of the medicines are still arsenic-based, none of which I knew. And it was visually easy to absorb and it dealt with an entire chunk of, you know, haematology, basically. It wasn’t the whole of haematology, but a whole lot of it. Well, that, you could do that story for a lot of things and explain how research has played a role and how that has been a plus and a minus. You know, We know more. We can deal with more. But it costs more. And it takes time to acquire this information. It’s a ten-year lead from, you know, thinking that something looks as if it’ll work to getting it working. And those sorts of information are, you know, that’s not around, generally. People, people are talking a little bit in those terms. But I think perhaps if you could get a bit more responsible journalism and a bit less sort of knee-jerk journalism, which you could build on now, at this moment, it’s a terrific opportunity.

Again I think these are the sorts of things that need to come up in the public debate. But a QALY, you know, a quality of life, year life, or whatever it is, and what the measure is for the benefit that you might get from a particular drug seems to me extremely wide-ranging in its, one’s understanding of what it might be about. Because when I’ve looked at some results of trials, and thought about what the papers have said, even if you get a sort of eight-week improvement in the length of life that counts as a terrifically good outcome. And yet that might be at huge physical trauma for the patient. And I’m not sure whether that’s understood when people are saying, you know, the drug is beneficial.

I’m not even sure whether you have to go through that stage in order to get something that will give you eight weeks of good life. You know, whether you have to go through eight weeks of something, before you can get to a point where you’ve worked out what will give somebody eight weeks of beneficial life, or whether you can even say to someone, Well, it might give you an extra three or four weeks and they might say, Well, that’s what I want, because my daughter’s going to have a baby you know. I don’t know. I don’t think these things are clearly enough described for the public to understand what the issues are. And so, you know, when you look at the situation for Alzheimer’s and whether or not a relatively expensive drug, from the sound of it, could make a big difference to the rate of decline in Alzheimer’s, and you think about how long people have to live with Alzheimer’s, because they’re not necessarily going to die of ill health, one feels that that benefit may be much, much more important than the few extra weeks you can give to someone whos extremely ill with something that’s definitely going to kill them fairly soon. And I think those sorts of discussions are what’s really needed in order to help us prioritise how our Health Service money should go.

And that doesn’t mean that I feel that the trials that have been done in leukaemia and obviously helped [husband] – they gave him ten extra years of life, after all, which otherwise he would definitely not have had. So those trials which may have been pretty dramatic and appalling in the early days have led to something that is clearly worth pursuing at a later, you know, in their later development. But I don’t think enough of the, if you like, the longitudinal life history of medical events is, is understood. And I think that you need that if you’re going to understand whether or not to push or encourage or entice more people into trials and of what sort.

Yeah, and the side effects issue as well.

Yeah, yeah.

Because it sounded like this had some quite unpleasant –.

Yes, it was an unpleasant treatment, because it was two huge subcutaneous injections every day for seven days, which in themselves were painful and produced painful results, and were sore for another week or so. But also a lot of people felt very, very tired and, and dragged down for the next week. So for two weeks you were having, you know, two bad weeks, two good weeks. Well, I think for a lot of people that’s worthwhile. In fact, I think, you know, compared to the leukaemia treatment, a doddle, you know, nothing like as bad. But that’s, you know, still something that you have to explore, for each individual, and across an average. I mean my husband was jolly lucky not to have all the awful side effects from the leukaemia treatment of serious soreness and sickness. He had a bit, but some people were appallingly badly affected by that. Butnonetheless if that then gives them, you know, either the rest of their lives or another five or six years relatively healthy, that’s one sort of outcome. But I don’t know that that was the case when they first started trying these very tough drugs on people. I suspect it wasn’t. But as a result of all of that work, childhood leukaemia is completely different. You know, the prognosis for that is dramatically changed, and even for adults it’s a lot better.

Well, for people taking part in trials, I think you do need to find someone who has the time to explain to you what it’s about. And you need to think about whether or not it’s going to, broadly speaking, be more valuable to the bigger, wider world than it is to you, or whether you’re doing it to help yourself, because the level of impact of side effects and, you know, what it actually does for you makes a bit of a difference. But I think in that you do have to find someone whos willing to talk to you. And probably take it away from the arena if you have time, the actual research arena. And I don’t know whether a GP is any help, but I’d like to think that a GP could be revved up to take the sort of practical interest. I have to say my own, who is a wonderful guy, he backs off when it’s a question of talking about research.

And I don’t know who else you can go to, other than possibly people like yourselves at DIPEx* [healthtalk.org], and say, Well, are there other consumers out there who I could talk to? Because it would be quite nice to feel that you could get access to people with a bit of experience who can help you understand it. I mean, there are quite a lot of groups that you can track through the website and so on. I’ve not used them, so I don’t actually know whether or not they’d be helpful. But I certainly think that if you have time, talking about what it means and why it might be valuable is probably helpful, set in the context of how it’s going to impact on your life. I think it’s different if you’re ill than if you’re a carer. It really just is. And it’s obviously different if you’re ill and you’re hoping for a saviour to come along, because I think mostly I doubt whether trials actually do that for you. There are not very many which save your life. But that doesn’t necessarily mean they’re all awful or that they are bad things to be involved in.

*DIPEx is the name of the charity which runs this website.

And there were a number of features about the trial which I feel were less than brilliantly handled, which is in a way why I thought it was worth discussing it with you. It’s not that I thought the trial was badly set up. And it’s not that it was a silly thing to be doing, because I don’t actually have any knowledge at all about how sensible it is to do. But it’s not massively invasive, and it seems like anything that would be a sensible screening tool is a good thing to look for.

But I thought the questionnaire was both badly written and badly managed, inasmuch as it was cumbersome to fill in, long and tedious, and it had no way of distinguishing whether or not the mood impact that you were describing at the time had anything at all to do with the screening. And I wrote to the hospital who were managing it centrally, which is not the hospital I was going to, but another London hospital, and I tried to ask the team whether they would consider this particular issue as being a bit of a flaw. And I never even got an answer to that, which I thought was, well, which demonstrated to me that the whole study was being very, very badly managed.

I mean it was just about at the time when my husband had had a relapse and all my feelings were related to that. They were absolutely not related to anything to do with I was coming along for screening and might it be worrying me that, that the results might be positive, and I didn’t want to know. It had nothing to do with that. And at that point I thought, Well, why am I wasting my time with these stupid people?

But again, given a whole year before you’re called back, and you only go for, you know, an hour, in the end it’s a jolly low-level involvement. And I think, you know, time goes by and you sort of get more rational and you think, Well, I’ll give it another go. If it’s bad this time, perhaps I’ll drop out then, you know? It’s very low-level exposure to anything.

So the questions were things about your general mood and —

Yes.

— anxiety?

Yes, yes, yes. And they were totally unconnected to the rest of your everyday life. They, I think the assumption was that somehow because you were filling it in at the moment when you were about to be screened or had just been screened – I think perhaps they sent it just before you went. I’m sorry to be so hazy about these things but, you know, once a year over six years and all finished a year ago, it’s probably a bit difficult to recall. But I think that they made a totally unwarranted assumption that it was, because it was delivered in association with the trial that somehow your responses would be associated with the trial. And there was absolutely no way at all that you could indicate that there was some other life event. I mean I wrote it all in, all over the thing [laughs], and I sent it off with a letter saying, I think you ought to get in touch with me. But I don’t, I’ve no knowledge about whether they would be able to take it in. I would doubt that they could take it into account, you see, because the way you set up questionnaire responses doesn’t allow for that.

I suppose the only thing would be that they would hope through randomisation that they would, the chance of having people who had something else going on in their life would be equal in all three groups.

No problem with that. But that doesn’t make it any better if you’re being asked a whole lot of questions that you think are irrelevant, I mean from the point of view of the recipient. From the point of view ofthe researcher, it may not be a problem. But then they still might have had the courtesy to write back and say, Actually we randomise, and it doesn’t matter, you know? Any of those things could have happened.

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.

And have they said to you if they’re going to let you know what the results of the trial are?

Well, not really. And that’s something that I also find very depressing, actually. Because again in the case where my husband was on a trial, they’d been trialling a particular drug for quite a long time on a European basis, and then they’d moved into just trialling it in one London hospital, but the European trial had pretty much closed, come to an end, and was being reported on. And I actually asked for the results of that, and I was told at the trial hospital that, well, they didn’t quite know when they’d be coming out but, yes, of course, possibly something could happen one day. I actually asked my husband’s consultant personally in a different hospital, and by return of email he sent me the results. They were there, they were possible, they were available, and they were not given automatically. And even when asked they were not exactly withheld, but it wasn’t made easy.

And that I do feel – I mean I don’t think my husband could have cared a pin what the results were – but I wanted to know. And in the ovarian one I certainly would like to know, because there are, there’s obviously, I mean, you know, plenty of opportunity for me at some later stage to be told I must be checked. And whether or not the blood test or the scan are a better way to do it, I would be very interested to know.

As far as the professionals are concerned, I think they do need to think very carefully about the problem that, yes, a lot of medical advance comes, has come through military sources and originally the soldiers needing one form of cure or another. But we aren’t numbers. We are individuals, who need to be taught to be intelligent about what we are doing, so that we can collectively be politically more sensible about our whole medical world. And I think that means they have to be much more careful about consent forms, and information about trials, and giving results back and discussing, and making sure that the trial builds in the funds for that – because it’s not a big amount of money that’s needed, but trials are always short of money. And I could never talk to the research nurse on [husband’s] trial because he was always too busy. He was sweet and very nice, but he was run off his feet, because there wasn’t enough money. And it isn’t a big amount of money needed to talk to people. So, you know, build that in to your funding.

Let’s start with the ovarian cancer, and just tell me how you came to be approached in the first place.

The GPs I think must have been recruited worldwide, as it were, or nationwide, and sent out letters. And they must also have had an age moment at which they sent it out, because half my friends in the area got the same request to be part of the trial, which is a three-arm trial. And they’re not all on the same – or were, I mean I’m finished now – but they’re not all on the same arm. Because there was a do nothing, just watch; there was an internal scan with a, you know, a wand, a uterine scan; and a blood test. And I have friends doing each bits of those, and I was having the scan. And at the time I already knew quite a lot about trials because my husband was actually involved in all sorts of trials. So I thought, Well, this makes sense. it’s a screening trial. It’d be jolly nice to have a good screening system. So why not do it I mean, I had very little to lose basically. So I went along and I got the regular screening. And it was, involved two things. It was asking both the question, you know, which of these screening techniques was worth having, if any, but also how did screening affect the people who were being screened? So they had a massive long questionnaire that you were expected to fill in and tick boxes about how you felt about this, that and the other.

And I went through the whole process, which actually I failed to remember was a six-year process, which has just come to an end. So I’ve had, I’ve been doing it every year for six years. I get a letter, called up to the hospital. And on two occasions they get you to fill in the questionnaire, right at the beginning and then somewhere halfway through.

FOOTNOTE’ This is the UKCTOCS trial looking at ovarian cancer screening in women in the generalpopulation between the ages of 50 to 74. There were 3 trial groups.

In group 1, women were given a yearly blood test for the tumour marker called CA125, and then, if that is abnormal, a vaginal ultrasound scan
In group 2, women were given a yearly vaginal ultrasound and then, if that is abnormal, a CA125 blood test
In group 3, the women were not given any screening tests

I don’t know many people who have been ill with, particularly with a cancer, who haven’t been keen to be on a trial where they have felt that the trial could do them some good, that they would get some benefit.

And I know more people whove not been able to go on a trial because they weren’t suitable than have gone on a trial and regretted it, if you like. In fact I don’t know anybody whos gone on a trial and regretted it. I do know some people who have not expressed any interest at all in a trial, and I suspect that may be because they are attending hospitals which are not in the research mode, and so there really isn’t anything available. And in situations where maybe they could be expected to start to take an interest, because clearly they haven’t responded to the standard treatment in the most encouraging way, you’d think those sort of people might think, Well, I wonder whether there’s anything being tried out that would be better for me? And I’ve been interested where they haven’t wanted to pursue it. And I think it’s a lot to do with just the broad context in which you are being treated. If you’re in a research environment, I think trials become a natural part of the situation. And I have to say in my husband’s case, in leukaemia, there’s almost an assumption that you’ll be part of a trial in the London research hospitals, because there are, that is an absolutely standard offering. And I don’t suppose there are many people who turn it down. I don’t know if there are. But to me ten years ago that seemed to be almost a sine qua non. You just did it because you were told it was happening, and you were part of it, and did you mind, and ba-da, which at one level people say is rather unethical. But at another level, if one had known more about what that research had been achieving over the previous twenty years, you wouldn’t have said it was a silly thing to do at all. Because quite clearly the research that had been going on had been moving the success rate in treatment on by leaps and bounds. So, you know, at one level, if you know anything about it, the whole trial situation and research and being part of one is very different than if you’re in a context where there’s not much known.