I was struck, really, I think with the R&D [Research and Development] strategy that in there is something about – I don’t know the exact words – but something about people should be, it’s something that you should expect, both as a clinician and also as a patient, potential patient, the opportunity to be involved in research, that it should be an expectation. Well, if it’s going to be an expectation I think there’s going have to be an awful lot more done towards making that into a reality. Because if it is an expectation that I as a patient should feel that I should be offered research, then [laughs] I’ve been let down somewhere along the line. But I mean these are just words aren’t they? And I think it’s going to take a lot more to get to the point where that is that is the case.

So when I got my results, at that point I must say I didn’t think about anything much except the, the difficulties of just coping with this diagnosis. But I was seen at one of the, what I understand to be one of the best cancer units, breast units in the country, in [city]. It’s got a very good reputation, I know that. So I thought, firstly I thought, ‘Well, I’m in good hands here. And secondly, it was a little while later but I did think, ‘Oh, well, perhaps there will be an opportunity for me to be involved in some research. It was rather strange being on the other side of things. It’s difficult when you look at it dispassionately to know how you will feel when you’re going through treatments, but I think all the way along the line I did feel that I would like to make some contribution.

I raised it originally with the breast care nurse at my appointment – yes, my appointment where I went for my results and found that I’d got cancer. In the discussions afterwards, after I’d seen the surgeon and – or the – yeah, the consultant and she’d given me my diagnosis I then, as I say, went and had a chat with the breast care nurse. And it was, actually it was during the course of that discussion, because she’d talked to me a bit about what I did, and so I did ask at that point and she went, she did go and sort of make some enquiries but she said there wasn’t anything. The only thing that was happening at the moment was a trial for post-menopausal women, which wasn’t suitable for me at that point. So no, and I don’t know whether – I think that the focus within that particular hospital is very much on the surgical side. I think that’s their sort of strength and their research strength but whether – I don’t know. AndI think in fact the operation I had with the reconstruction was, is probably quite new, or at least I got the impression that it might be quite new and presumably there’d been research around that. But there didn’t seem to be any trials going on at the moment for surgical techniques. And nothing – in the chemotherapy, I don’t, in fact I’m not sure that I even enquired at that particular time about the chemotherapy one, but it certainly wasn’t offered to me.

But as I say, I did bring it up originally with the breast care nurse and she said no, there wasn’t anything suitable.

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.

Less than a week after the operation [removal of a breast lump] my husband rang to see if the pathology results were back and we were asked to come in to see the consultant the following morning at 8 oclock. And you know at that point that if the consultant wants to see you at 8 oclock in the morning it’s not good news.

So that was a really anxious night, and true enough on the Friday morning he told me that the lump was malignant. Now coincidentally I’d just started my PhD, which was looking at clinical trials and my own discipline [dentistry], and I’d gone to a course on the ethics around clinical trials down in London. So in between having my surgery and having my diagnosis I was on a course, run by a very well known breast cancer clinician and a lady that worked at the Cancer Research Campaign all about the ethics surrounding clinical trials and recruitment etc, etc, and the example that they used was breast cancer.

And I was sitting in the audience thinking, This will be me next week, and then it was except for it wasn’t next week, it was a couple of days later. So at that point I’d already, in the back of my mind, I think, decided that if my lump was malignant I wanted to be in a trial and there was no question about that, because of what I’d heard on the course, what I knew from my studies, that, you know, that was the way forward. But when I raised that with the consultant that was treating me he said quite categorically that, Well, there’s no decision about how we treat you. You know, do x, y and z. But I’d had the whole three days down in London knowing that treatment of someone with early breast cancer under 50 is not a question of x, y and z, that there’s a lot of uncertainty, and I knew of this trial, you know, the under 50’s trial. So I said, Well, I’d like to be involved in the trial. You know, can I be involved? And at that point he said that I mustn’t let science get in the way of the best treatment for me. And all this conversation was taking with me still stripped off to the waist with a little towel across my chest lying virtually flat on the bed.

I certainly wasn’t happy with that and I don’t think my husband was either, because he knew that I was very pro clinical trials. So that was the Friday and on the Monday he rang up a breast surgeon at another hospital who had been his consultant elsewhere when he was a medical student, and he arranged for me to have my care transferred to this other unit. And he was involved in that clinical trial, and knew about it, and knew the people who I’d been on the course with, so everything went quite smoothly.

And at this point another factor entered into the story. I had read, and they had also mentioned to me, that there had been some basic science papers published about a year previously, which showed that there was a potentially a rather good treatment that might be available, an experimental treatment, which would specifically destroy cancer cells that arose in people who are carriers of the BRCA2 mutation or the BRCA1 mutation. So I read the papers and I thought it was very persuasive and likely this might be good for me. And I talked to one of the researchers who was doing the work about what the prospects were, what the worries were about side effects and so on, bad consequences of taking the drug, and was rather reassured. So I was quite keen to get enrolled in the trial, which I knew was now going on. So I had long discussions with the specialists, with the consultants at the hospital that was looking after me. They were a bit uneasy about putting me onto this trial. So this is a phase 1 trial, a trial of a drug which had never been used in people before, certainly not in the long term, never been used for cancer before, and was in principle quite a worrying sort of drug because it interfered with the action of a protein in cells which is very plentiful, and controls all sorts of very fundamental processes to do with DNA repair.

So on the one hand the drug was a little bit worrying, as most phase 1 trial drugs are, and on the other hand I was perfectly well, so I’d been diagnosed at an early stage in my disease, the hormone treatment had kept it well under control, I’d never really had any bad symptoms and I felt healthy and well. So in the ordinary course of things, if it were not for the existence of this trial, the recommendation would be that I should just carry on, and then there were palliative things that could be done eventually if the cancer, when the cancer got bad.

But I wanted to have a go [laughs] on the phase 1 trial, and they acknowledged there was a reasonable case, so they discussed with me at great length and discussed with one or two colleagues whether it was appropriate for me to go on to this trial. And eventually it was decided, yes, I would.

But I’m involved with CACTUS, which is the cancer clinical trials unit for Scotland. I’m the patient representative on the executive committee for that, and I was talking to one of the guys there, and I was talking to someone else, maybe it was the lung clinical studies group, about a website for clinical trials. And they said, Oh, well, it’s very difficul and all that, because we spoke about it before as part of the West of Scotland cancer network, the lung cancer part, and we said then the professionals weren’t too keen about putting available trials on a website or anything like that. He says, No, we don’t want people phoning up and demanding to be put into trials I said, Wel, I said, it’s not quite that I said, it’s a case of putting up what is available, but also having on it that these trials are not available, are not suitable for every patient, and every patient’s not suitable for these trials. it’s up to being acceptable and the many different aspects But it would be interesting for people to be able to say to their consultant, Well, what about this trial, what about that trial? Explain it to me, is it feasible for me I says, Whereas just now people just don’t know, and it’s up to the physician, the oncologist, whoever it is, to tell the person about a trial.

Now, that medical professional might not be too interested in that particular clinical trial, therefore he won’t, or he or she won’t offer it. There’s also the fact that, with all due respect, there are medical professionals who don’t like losing their patients to somebody else, so if they’re not doing that trial but somebody else is, they don’t want to lose their patient to that other professional. So I said, There are various aspects of it. I think people need to be aware that there is a possibility of trials without it always having to come from their clinician, like I say, who might not be into clinical trials Well, that’s too much work for me, I’m doing enough Because there is a bit of work involved in them, because they’ve got their own NHS, probably all their own private work as well, some of them – no disrespect meant. So there is a workload aspect probably too, but I think people should be allowed to question, Well, can I go into this clinical trial? No? Why not and if they’re not suitable then that’s fine, you know. But yeah, there should be something where people can challenge the chance or the opportunity of clinical trials.

I think people should be encouraged to do that because it’s part of being in a community, a citizen of a community, really. It’s part of that community contribution that people can make. I know that when you, you know, you have a, an awful diagnosis it can be really, it can, you know, throw you and sometimes, you know, it can’t, you don’t want to think about other things. But I think also professionals perhaps shouldn’t be scared of asking people. I think when it’s something sensitive there’s a feeling perhaps that [intake of breath], ‘Ooh well, I wouldn’t want to overload with, you know, getting them to do something else. And I know from what I’ve read from the GP angle on this that, that there is something about the nature of the GP-patient relationship that makes the GPs very kind of protective of their patients. And perhaps they should be a little more relaxed about it, that people are, they should, you know, these things are, should be offered to people and it should be part of the routine. And if you know that, if there’s an expectation that if you’ve got something you might be offered this, I don’t think it would be so taboo and feel so difficult.

I mean, I do think that there should be more simple advertised messages out there. I don’t, I don’t know that generally people would even think about it. I don’t know. We don’t get sort of advertised messages about, ‘Would you like to be involved in, in research and this is where you can contribute. We have to sell it to the general public as being something that is a really good benefit to – okay, you’re ill, or maybe you’re not ill, but, you know, in terms of NHS trials a lot of it is with people who are suffering from something, then this is something that you can do that that would actually help for the future. So I – yeah, I think there should be much more open discussion about it and much more, some simple messages -where you can find the information, if you want to get involved in research these are the benefits, and, and do some advertising. There should perhaps be some, something, some money put into advertising.

I had been on gold injections for many years for my arthritis and, you know, if I got iller they put the dose up and then as I got better they would lower the dose and, and I was just thinking, Well, you know, this is crazy. Of course I’m going to get better. If I’m ill I’m going to get better, because it’s a disease that cycles. And I had asked them – this was long before I was a doctor – if they would just give me water sometimes instead of gold and not tell me about it, at which they laughed and said Oh no, we can’t do that.

Later on I was told I was being withdrawn from the gold, because I had beginnings of kidney damage and, you know, they would try something else, azathioprine, which is quite a toxic drug. So this time I asked if it could be introduced experimentally without me, you know, being told what the drug was, because they said the gold had probably not been doing me much good even though I’d had it for years and years and years. So it’s known as an ‘n of 1′ trial – a one person trial where you have the drug, then you have something that looks like the drug that isn’t the drug, and you don’t know when it’s starting and ending, to see whether actually it is related to your symptoms, because in a disease like rheumatoid arthritis you can be very ill and then you can be better just because the natural variability of the disease.

And my rheumatologist, she was very keen to do it with me and we looked up how these trials were done. We found a pharmacist who is experienced in n of 1 trials, we got the drugs from the [laughs] pharmaceutical industry, and we were going to do the trial. But then, interestingly enough – which was simply giving me the drug – we were then told we couldn’t do it because it would have to go to an ethics committee because it was an experiment, which I found ridiculous. You know, you can give me the drug, you don’t know whether it’s doing me any good, it’s toxic, but to give me it in a way that I could actually find out whether it’s doing me good suddenly we weren’t allowed to do it. And the other thing that was very interesting about that trial was the placebo was different from the drug, so you could tell which was which. And we contacted the pharmaceutical company concerned and they said yes, it was always like that, and it was like that in the trial, which made me very suspicious now about blinding in trials. You just think, God. I could distinguish those. So then we had to look up things like, we were going to crush them or put them in capsules, but because it’s toxic, that breached health & safety regulations. Then we were thinking about covering [laughs] them in chocolate. But by the time we’d done this I was getting very ill. My consultant just started me on the drugs, she said, We just can’t wait to set this up, and it didn’t work. I actually got to quite a toxic dose. She said This is clearly not working We were upping the dose and then we just stopped it, so we never got through the process of doing the trial, because it was blocked by the powers that be saying it needed to go to an ethics committee, and that was just taking way too long for me as an individual patient.

Were you trying to go through the ethical process?

Yeah, we, at that stage we were going to go through the ethical process, we’d drawn up a protocol, we had everything written and we were still exploring methods of making the drug truly blinded so I wouldn’t know what I was on and that – so we, we hadn’t actually submitted it to an ethics committee because we were still, hadn’t we’d just got to the chocolate-coatedtablet idea when, by which time [laughs] we she’d decided it was toxic and was not going to do any good anyway.

So then I stopped that.

Well, basically if you’re, I would say to people that there’s two, two things. Firstly, if you’re having clinical treatment for any medical condition and you feel that things aren’t improving the way you may have hoped for, or that you just are not happy, you need to obviously investigate that further, go and research that further. There’s some really good websites out there, and always go and look out for information, responsible websites. One good way of knowing whether the information is correct is on the websites there’s the HONcode [Health on the Net], which is a, a regulatory code that looks, that monitors the standards of clinical websites. So if you go to one of the HONcode websites, there’s no direction but you just hit and miss till you find one of those, or one of the standard medical websites that are advertised, and look up about treatment. Because there’s always loads of things going on about research. And if you want to participate and you’re not sure, don’t feel put off. If you know there’s a hospital where there’s research going on and you’re not sure whether you would be accepted or not, you can, you could phone them up. You can phone up, you could phone up the academic department and say, you know, I’m a patient. I’m interested in such-and-such, getting treatment for such-and-such. You know, if my GP refers me, you know, is this something that, that I can get involved in or be seen by someone whos got a strong academic interest

That’s the first thing, I would say. Because the first step about finding out about something is not just the research on the net, but finding out what’s happening in your local academic department. So that, that’s the first thing I would recommend. don’t be afraid of talking to them. They have administrators who are incredibly knowledgeable about what goes on in the department. Talk to them and find out what’s going on. And talk to your GP or your current specialist. And if your current specialist says to you, What do you want to go and do that for? You’ll get loads of questionnaires and stuf, say to them, it’s not that I think you’re a bad specialist, far from it, but I want the best treatment to give me the best outcome And in order to do that, you’ve got to do your best research. And I think stick to your guns and go for it.

What I would say to professionals is that, If you’re not involved in research, why aren’t you? Go out and get some training or go and do, go to some lectures and get out of the rut There’s something very exciting about research, and I think that it’s about doing the very best you can. We owe it to everybody, not just so that we don’t get stuck in a rut doing the same thing because we’ve always done it before, but making the best use of resources.

After a clinical trial, or once they’ve done whatever tests, it’d be nice if they sent you a thank you letter, like a PR job, and then they ask your permission whether, your name can be put on a database, and whether you’d be interested in taking part in further trials with the researcher or with the institute. Then they’ve got a bank of people, so when they want to do something they could contact them and use them, than try to re-advertise and trying to recruit. Also another thing I find with some of these adverts which I saw one hospital down south of London, they advertised, they said, oh, they give an e-mail and they give a telephone number. When you ring them it goes to answer phone machine. I don’t know whether you were aware of this, a report was published a few years ago, a lot of people, even this day and age, don’t like to speak to an answer phone machine. They give up, right, or if the answer phone machine says, Would you pleas, well, Leave your name and number. We will ring you back Or This answer phone will be manned on such and such a day at such and such a tim. And then of course people will ring. Even sometimes when you leave messages on the answer phone machine they don’t bother to ring back, right? In some cases it would have been better at least if they say the criteria – not the full criteria – if they say, Oh, this study is for under 60 or This study is for white male or something, then people wouldn’t bother. They generally say, Oh, do you suffer from heart problems? Then ring thi. They are wasting our time, Sometimes they advertise, and then you ring them up, and nothing happens. Then two months later they advertise again, and then you think, Oh, they advertised And then you ring them up. I think they, being scientists and doctors they may not have been on courses about customer service [laughs], after sales service. It’d be useful if they’d been on this and then they’d think, Oh yeah, let’s handle this approac, yeah.

Do you think there’s more that could be done to make people aware of these opportunities? You found out about it through your GP?

I suspect there are, because the ones that have come through to me, I mean I’ve only had from my GP ones on various cardiac conditions, and that has been very much a pass-through note from the research area. And it was only then from that research area that they identified a large number of areas that they were doing various trials in and asked, you know, whether I’d be interested in any. So I’m not sure how you would be aware of the others if – I mean, at the moment the only source is really the GP, and I think they’re very selective in what they send out, probably.

So I suspect, you know, there’s a large area of the population which is missed.

Yes, it’s fine once you are on a database like this but
Yeah, I mean once you’re on, you’re okay, but how you get on in the first place I don’t know. I mean, I certainly wasn’t aware of this company before I visited them, and I mean this’ll be only one of several, I suspect.