Clinical Trials

I think the professionals have got to be very honest with the patient. And in some ways I think perhaps the doctor who was offering to put me onto a clinical trial in the end when the chips were down was just slightly more interested in getting people onto his clinical trial than stopping to think very hard. You know, if this was, this is his patient, is he really making sure that his patient gets the absolute best treatment there is available? I mean, often that won’t be the case with trials. But where it is I think the doctors have to be quite sure that if this was their wife, their daughter, their best friend, are they sure they would say, “Go on the clinical trial.” Or would they say, “Actually I think there’s something else better we could do for you than the risk of being randomly assigned to no treatment or perhaps not the best treatment that we know.”

I think it’s very difficult, because I think probably all doctors doing clinical trials have high hopes of the treatment that they’re testing out is going to prove to be some kind of breakthrough, is going to be useful and valuable for their patients.

 

So part of them must be saying, “I think my patients will do well out of this.” When you ask, when I asked my doctor, it was, “Well, I may think that, but I don’t know it. I can say I’ve got a hunch, but should I really be prescribing on a hunch?” And I said in the end, “Well, yes, actually. Because I come to you, my doctor, for your best hunch. There are going to be, may be lots of things that doctors don’t altogether know. But from your long experience, I would like the benefit of what you on the balance of what you kind of feel, even if you can’t prove it, is going to do me best, most good.” And I think that is a tricky dilemma for doctors with these clinical trials. 

Well, yeah, I’ve, I found the professionals really helpful, supportive, as I say, speak plain English, are prepared to put up with one’s individual mores and, and idiosyncrasies, indulge people – well, they’ve indulged me in taking, I’ve been supported in everything I’ve done, whether the team may have thought it clinically appropriate or not. And they’ve always been there, and if I need help or I need to change meds or whatever it is, then they’ve been easy to get in touch with and very responsive and positive, which doesn’t mean to say that they won’t tell you about negative things if you ask. But they’re not bombasting, bombarding you with awful things at the beginning. There’s very much a feeling that you can come to things at your own pace, mm.

 

 

Well, just by, I can’t - one can only do what one can do, and that is to try and influence one’s own social network.

 

I was thinking about the professionals and how they interacted with you over the trial.

 

They were, well, they were great, you know. I mean, I felt informed. I may have forgotten since [laughs]. Again I felt supported. I was given lots of information in a very positive way, at a time when… I could have been really emotional - I don’t know, I suppose I was - but that I was relieved and pleased that I was able to make a contribution. Yeah, that’s right. Mm.

 

Yes, because, yes that’s right, pleased to be able to do something positive, turn it round out of something pretty negative.  

I had to give it up, so I had another DEXA scan which showed I obviously still had got osteoporosis. It’s not something that’s going to go away. And I was told by the lady doing the trial that if they found I had osteoporosis in the first place, they’d contact my GP so that I could be put on something to help me. But I went to my GP after an accident, and had heard nothing - this was a few years later. I hadn’t had any medication in those years, and I think perhaps I could have been on something to help me and I wouldn’t have broken two of my vertebrae.

 

 

No, I didn’t realise. What’s really so stupid, I didn’t think that my GP would let me, just let me go without anything. I thought they’d call me, because he does with everything else. And so when I did ask, he said, “No we haven’t heard a thing about this, nothing.”

 

Yes [laughs] I must be living in the last century.

 

It would help if we do get a run-down afterwards to tell us, just so that we know that we’ve been of some use and importance, and it’s helped you, in layman’s terms, because we don’t all understand what x’s and y’s and equals means. Should do from algebra lessons, but it doesn’t mean a lot. And if you do find that our GP should know, please inform the GP, make sure they know, because it could take a few years to pick this up, like it did with me. And I feel I’ve missed out on years of treatment, whereas I could have been on something to strengthen my bones for all those years, six years. Yes. But you’re doing a good job though [laughs].

 

Definitely better communication.

 

Yes. I don’t think my GP lost the letters. I really don’t. I just do not think they went there in the first place [laughs].

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 difficult” 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, “Well”, 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.