Clinical Trials

Merilyn: A trial is a very personal thing, I think. Some people would be quite positive, like me, and would think yeah it's going to be good for me, it's going to be good for others. Other people might be a bit dubious whether to go into that sort of thing, but I think if you sit back and think about it, that medicine has made such a progress over the years. And it’s only because the likes of people doing clinical trials, drug trials.

Wendy: We were explained to us that it's a six months chemo anyway, but the trial would be a 12 month trial. So for the first six months I'd be on both for the latter six months just for the clinical trial. They explained all the side effects and everything, and after much discussion in the family, thinking about the impact on the children and if all these side effects did materialize, what impact that would have on us as a family with no extended family to call upon? I thought it was too selfish of me to ask for that. But my children said, “look, mum, we’d put our lives on hold for a year if it means that you're going to be better at the end and you've got a better chance of survival”.

Phil:

What, looking back, would you say were your main reasons for wanting to take part? Well, the fact that it specialised in something I had, the problem I had. These were people who were specialising in that subject, so. Well, I suppose I knew more of what they were talking about, to put it, you know, put it bluntly. Tend to be -, they gave me much more time. He went there and he took say 9 or 10 ratings, which gave a much more accurate, reading or my blood pressure, whereas your GP would only have time for one, usually just one reading.

Wendy: At which point we were really worrying  and one of my husband's main worries was what happens after all this hoo-ha and all this soul searching. If you say, I want to go on the trial, and then at the end of the day, you're on the trial without the extra drug. You've gone through all that for nothing.

Marie: If it was, if you were a doctor or you had medical experience, I think you would have probably read it and understood it. Yeah, but it took me from 1:00 in the afternoon until 6:00 at night, reading it, reading it and reading it. But, I think there was about five pages, which was absolutely full of medical -, sort of medical information, which I frankly couldn't understand. It was a doctor talking to a doctor, not a doctor talking to a patient. I class myself as reasonably intelligent, but had I not been intelligent? It would have been very hard to understand. And after six hours, I was angry.

Harry:

And so apart from that, there weren't any times when you thought. I've had enough of this, I want to stop?

No, no because by then I was beginning to understand that this is a project, and it's designed to find out things that don't work. When the things don't work, stay there and get it straightened out. Don't do a runner. Know what I mean.

Pam: Please be very patient with us. We are stressed. We are very, very worried about our conditions. We are very scared. We are going into an unknown area and that can be very, very worrying. Please answer all our questions. Some of them may seem stupid to you. Sometimes we may not take on board everything you say to us. Please do put up with us when we do ask you the same thing, we ask you to repeat things in a different way. Please let us bring somebody with us and make sure that they're included in any discussions and just we rely on you for your help. So you've got to make sure that we can trust you.

Sabiha: I think I was kind enough to them to take part in this and my time and everything, but that was the least they could do to feed back. I think feedback is more important because that looks like you've taken part and you know, that's it they've had what they wanted and that's it. Bye bye. You know that's not good enough you know.

Despite that, would you still take part in another trial if it was offered to you?

I would, I would.

And why is that?

Because it's of benefit to a lot of people.