So for example mental health is, is an area that, that is for me a priority. But I think, you know, we have to look at it on a very broad perspective. It’s not just about mental health. But we have, for example, areas around diabetes, where I think that the psychological impact and the mental health impact of such chronic diseases are not researched enough. And this in fact is something that, that health psychologists have spoken about for a long time. I think it’s, it’s about developing areas like that as well, because mental health isn’t mutually exclusive. I think if somebody sits down and says to you, You’ve got a disease that could blind you. You could lose your foot. You know, your nerves are going to, might be dead in thirty years’ time off your foot and all this sort of thing. Very scary things that can happen to you. Or, you know, You’ve got to inject yourself for the rest of your life and, you know, and you’ve got all these risk factors. It’s really, really scary. And people can become quite depressed as well, because they might feel their life is limited. It shouldn’t be, but they might feel their life is limited. And they may have also psychiatric difficulties as well. And the same set can be applied to cancer. It’s well know that people can get very depressed, you know, pro, post-recovery from treatment, because, you know, it’s kind of an anticlimax. They’ve had their treatment, they’re now better, and they’ve had all of this wonderful care around them, they might have been on a trial, they might not have been, but all of a sudden they are sent home and packing saying, Oh, come back every three months for your check-up. And that’s it.

And everybody sees them as better. And it can be quite difficult, quite – raise a lot of difficult emotions. And areas like this, where mental health is quite important, I think are not researched enough. And I think there’s more scope for clinical trials in non-drug areas of people’s lives, I mean which don’t involve medication. We’ve seen it, you know, in, in mental health but I think it needs to expand more into other clinical areas. So we can look at how, you know, people’s lifestyles or the effect of clinical treatment can affect people’s mental state or affect their physical well-being, but without there needing to be drugs involved.

At the same time I think that drug trials will continue, because they have to. We have to know that drugs are safe and that they work. But it’s not the be-all and end-all. I think that the expansion now of trials outside a medication route is growing, and I think there’s a lot of scope for that to be developed in all areas of medicine.

I mean, the big turning point for me in terms of my own personal well-being and physical well-being was when I found out about acupuncture. I was actually having acupuncture for pain by a physio in the national health, because my back, the discs have gone wobbly because of the Parkinson’s. And she referred me to somebody who trained, her trainer, who actually does five-element acupuncture. And he’s, he was an anaesthetist, his wife is a GP. They went to China for a sort of a gap year years ago, stayed for two, learned the language and now practice, and it has been wonderful. But then you read in the paper all these things – charlatans’, alternative therapy’s rubbish’, you know.

But I think it would be interesting to see some proper research on, on alternative and complementary therapies, because I talk to so many people, like when I go for hydrotherapy or whatever, whove tried different things and they’re convinced that they worked. But you can get, then you get – you’re prone to get – these people who say, it’s all charlatans and con-men, and there really isn’t any evidence Well, that’s probably the, actually the answer. There isn’t enough evidence. It doesn’t mean to say it doesn’t work. It just means to say there isn’t enough evidence [laughs].

I think that it’s a very good idea that there have been recently proper trials and, and reviews of all the trials that have been done for alternative treatments, because huge claims are made for them. And in fact it turns out that all of them have a good effect, but no better effect than placebo, no better effect than a sugar pill, or being given an ordinary massage or some, some other treatment. And I think it’s very important people should know that. There’s a big mystique around alternative medicine. There’s a lot of pressure on the NHS to provide all sorts of treatments that people say make them feel better, and may make them feel better.

But I do think we need to know the actual science. So I think, you know, if there’s a lot of pressure for one particular form of treatment on the NHS, it’s very important that we should have proper scientific controlled trials. A lot of these alternative treatments of course you can’t quite do that with. it’s quite difficult to stick pins in people [laughs] without them knowing they’re having a pin stuck in them. If you’re going to do a clinical trial on acupuncture, they will know whether they’ve had it or not had it. Nevertheless we do need to know what works. And I don’t think it’s any good to just go through in a kind of fog, where you say, Well, patients say they like this. So therefore the NHS ought to provide it That way you waste an awful lot of money and time.

I think the effect of living with someone that has a condition like mine needs a lot of research. It’s the partner that suffers, it’s the partner whos in 24/7 contact that has to cope with the mood swings, of which there are plenty. There is a very good actual course that one can do. It’s called The Expert Patients Plan, and that helps you to live with long term conditions regardless of what they were. I actually did that, and there were people with emphysema and people with arthritis who were in a great deal of pain, and as it was a group situation we all fed in how we felt, what our problems were, and how we could problem-solve. And our facilitators were absolutely marvellous, and we really gained a great deal of benefit. But really I think if people could work and help the partner and perhaps possibly the wider family as well, the effects on them, and how they can best assist the patient, that would be extremely useful.

Has being in the trial had particular implications for your partner?

I don’t actually think of it as a trial. I think of it as just another treatment. And he’s been through this third lot of chemotherapy, and each of the chemotherapies has had a different side effect. But he’s been extremely supportive and has taken over lots of domestic roles, like washing up and things like that, which really is fantastic. This time, actually, I haven’t been able to stand quite as much as normal. I’m supposed to sit with my feet up, and so therefore there are things that I had been doing heretofore but find it far more difficult to do now. So he’s, I’m afraid, had to be landed with that, as well as having his own heart condition. So it’s tough, but we, we rub along.

The number of clinical trials that are published in surgical journals now has almost gone up exponentially, so I think even the surgeons are accepting uncertainty, and new surgical procedures are getting trialled against existing surgical procedures.

I suppose it’s one thing to accept uncertainty within your self and another to express that to patients, maybe.

Yeah, I mean you’ve also got collective – individual uncertainty and collective uncertainty*, so surgeon A may swear that operation A is the best, and surgeon B may swear that operation B is the best and that’s fine. But you’ve got to compare the two operations done by as many people as possible. And that’s where I think a little white tablet you’re finding out which tablet or regime does the greatest good for the greatest number of people, whereas with any surgical procedure or something that’s dependent upon clinicians’ skill you’re looking at what does the greatest good for the greatest number of patients by the greatest number of clinicians, because if an operation is so, so complicated and difficult that only the most skilled surgeons can do, that’s not really useful for general application through a population. So you have to think more on population benefit rather than individual benefit, and I think in an individualist society that sort of attitude tends to get lost.

Mmm, and in —

Because everyone wants what’s best for them, rather than seeing the bigger picture of what’s best for the most people.

Yes, yes, and I think, I mean it’s still, it’s still hard for doctors, you know even if they accept all of that to actually explain that to the individual sitting in front of them, sometimes.

Mmm, it’s probably easier with the tablet than an operation. We’re coming to terms with similar things in our discipline [dentistry] which is again a very clinician-dependent one but – and we’ve got the range of different, like, braces and things that we can use – but as a profession we are becoming more comfortable about discussing these uncertainties, and more and more clinicians are prepared to enter trials. When I started doing my PhD there were hardly any clinical trials, and the ones that had been done were like testing different glues, which in a way is like a tablet – glue A versus glue B – whereas now they’re running really bold trials against quite different competing interventions.

* FOOTNOTE’ Individual uncertainty here means that an individual surgeon is uncertain which operation is best for which patient. As Jayne explains, however, sometimes individual surgeons have views about which operation they think is best, even when there is disagreement or uncertainty amongst their colleagues as a whole. This is collective uncertainty.

It’s the case that most cancers involve some sort of disturbance of DNA repair mechanisms. That’s what makes the cancer cells dangerous, because it makes them very mutable. And so cancer researchers are aware of that and there’s a lot of effort devoted to basic research on how DNA repair mechanisms work, and a lot of awareness that that would be a possible bit of cell function to target with drugs. And it may be that a bigger proportion of cancer research should be devoted to that area, but I don’t really know what the sort of quantitative balance is of research is at moment.

One thing I do think is very clear from my story, or from the story of this drug, is that basic biology research is absolutely essential. If you try to work on only those things which have direct and clear application to cancer, you won’t achieve your goals. You need to understand all these things about the basic molecular biology of cells and, you know, my story I think is remarkable because it shows so very clearly how doing that basic research can lead to treatments that really work.

And these are quite, I think, rather revolutionary times in cancer research, because our understanding of cells and of cancer pathology has advanced to the point where we can really devise more and more of these rational treatments that tackle the cancer in a quite specific way, and are a huge improvement, potentially, on the sort of blunderbuss chemotherapy methods that have been used mainly up to now.

So I’d put in a plea for basic cancer research.

Are you worried that basic or kind of blue skies type research is under threat?

No, I think it’s, in this country – well, no, I think it’s quite – there’s always a risk. Always there’s a possibility with a new sort of group of politicians or senior bosses of the MRC [Medical Research Council] or whoever it may be, that there’ll be pressure to do less basic research and switch more to translational or clinical research. But at the moment I think the balance is acceptable in this country, and the people who are in responsible positions, like the head of the MRC and so on, have a very healthy view of that necessity for basic research.

I mean, you want to supplement the basic research with translational research that puts things into practice, but not to sacrifice the basic research.

We tend to get the same people on each of the forums, and I’m a bit wary of them because – not wary of them, but [sighs] you get this thing of like, Oh, was it because I bumped my head? What caused the Parkinson’s? Was it–? For me it’s, it’s actually been relatively easy. It’s to do with organophosphate poisoning*. I’m fairly certain. And I’ve been able to do a lot of research and find that out. But then you get, you know, Well I had a head injury or I had migraines or I – smells, there’s something about people lose their sense of smell and often go on to have Parkinson’s. And I’m thinking, ‘Well, hang on. I breathe and I’ve got Parkinson’s.

There seems to be, they don’t seem to be able to differentiate between things that are parallel and things that actually meet, and so a lot of supposition is going on that is weird, I mean, that I actually don’t think there’s any quantifiable way of – I don’t think it would quantify, because it could be drinking coffee or smoking cigars. It’s that people have got to find some kind of a reason.

And it may not be. I don’t know. With me I know it’s not genetic because I’ve been, I was doing the family tree anyway. For some other people it might be.
* FOOTNOTE:The Parkinson’s Disease Society reports that environmental and genetic factors are key areas of research into the cause of Parkinson’s. Most scientists agree that a combination of genes and the environment conspire to trigger the disease, though exactly which genes and which external factors is still not clear. Exposure to pollutants and pesticides has been put forward as one likely environmental factor.

Well, I suppose, I’m particularly interested I suppose in how it affects, sport affects it, because I’m, I’ve always done a lot of sport, like running and football, that sort of thing. I still do now, you know. In fact it never, blood pressure never affected anything I did it all. You know, I didn’t even realise I had it, really. But it might be interesting to do some research on, you know, blood pressure when you’re under sort of high pressure, running or swimming or whatever, and see what the effects of that, that are. I’ve had, you know, sort of working ECGs when I’m on a treadmill or a bike, and they’re taking your blood pressure and everything there. So I think it might be an idea to, you know, do a sort of intensive trial on, on blood pressure, to see what the effects are, you know, athletes or people who do a lot of walking or whatever, swimming, you know, high activity, and see what the results are from that.

To sort of help understand whether it’s a problem for people —

Well, that’s right, yeah, yeah. I mean theoretically it should be helpful, I would have thought, doing, you know – I was a bit surprised when I first realised I had high, or I was told I had high blood pressure. I was a bit surprised, because I’d always, as I say, done a lot of running. I used to run sort of twenty miles a week and swim and always played football. So you think of yourself as being sort of above any problems really. But of course, you know, high blood pressure is not actually a disease or anything. it’s not a, an illness. it’s just something you’ve got. And it’s, you need to know you’ve got it because it can lead to strokes or heart attacks. So even if you’re fairly young and fit, you should be aware that you’ve got it and try and keep it under control.

If you want to introduce a screening test on a population basis – as a policy – then two thoughtful authors, Paul Glasziou and Les Irwig, made an interesting suggestion in an article published last year [2000]. You go to a random sample of the population and you invite that random sample to look at the evidence and to say whether that they think that this screening test should be applied to the population of which they are the representatives. If they come out with a clear ‘Yes’, then that gives you the legitimacy to go ahead and offer the screening test on a population basis. If they come out with a clear ‘No, then that also gives you a clear direction about what you ought to be doing on behalf of the whole population. If there’s a real mixture of views and no clear cut off at all that allows you to say that a majority of people are in favour, that obviously means that the information is sufficiently uncertain or equivocal that more information is needed before you have a license, a mandate, in other words, to approach a whole population with a screening test. I think that’s a very good suggestion and I don’t know whether it’s ever been tried.

Thinkwells an idea that came up with some of the patient groups that I work with. There’s a lot of ordinary members of the public out there who, who actually are interested in research and who would like to participate, like myself. You know, you never get invited by your doctor, and lots of questions out there about health, you know, Is it better to do, to really do a lot of exercise three days a week or a little bit every day? you know, and whod be interested and willing to participate. So the idea was we would set up a website where people could come together, and it’s, and it’s called The International Network for Knowledge about Wellbeing. So we’re concentrating on things that make you healthy, things people can do for themselves. And the idea is that the public come, they have their questions, we can look at the evidence and give it to them. We’ve also got a risk communication website so that people can have a look. If someone tells you Oh well, you know, there’s a one in 10,000 chance of, of dying from cervical cancer, and it reduces tenfold if you go, if you have screening, well, what does that mean? Is that a big risk? Is that a small risk? What other risks do we take like that? So there’s a database, you can compare it.

I prefer to give people information, but they need to be able to use that information sensibly. So this is part of what’s on the Thinkwell website, a risk communication website, so they can go and play with risks and if people tell them it’s a 0.006 risk, Well, what does that mean? Well, it will translate it back into, Well, that means that six, you know, in every 10,000 people might have it. So it translates it into more meaningful formats for people, and also enables them to get together and if they want to run a trial we’ll help them run a trial, and they can sign up to a trial. So one of the things we’re exploring for example is there’s – we don’t know, what we have in this country now, if you have a baby they have what’s called active management of labour, so there’s these things that they do to you, it’s all predetermined. Okay? And one of the things that they will do is the moment the baby’s born they clamp its cord. And there are people who argue that’s not a good thing. A third of the baby’s blood is in the placenta and cord and the argument is if you leave it a little bit, more blood will go back to the baby and it’s less likely to be anaemic. There’s an argument for delayed cord clamping but we don’t knows what’s right.

But health care professionals haven’t done this trial, but women would like to know. So our idea is that we’ll get women to randomise themselves on the internet, women who are having babies who are interested in the question will say, Yeah, I’m interested in participating in this research. I’m willing to be allocated by choice to choose delayed or early cord clamping. They’ll come on, we’ll say, Now toss the coin right, go and ask for delayed cord clamping in your birth plan. You go and ask for early cord clamping. And then we can compare the results because we’ll have two groups of – but it’s the women who are doing that trial, really, and we’re just taking their results with their permission to see if there is actually any difference in outcome.

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.