Clinical trials: Parents’ experiences

 I think I mean it wouldn’t dissuade me just because I said no to this particular trial I don’t think it would dissuade me from taking part in other clinical trials. If I thought they were of either benefit to the greater good or whether they were of particular benefit to me or my family but I think I’d still go through the same decision process, I’d still source out the information and make sure I was happy with the decision before I went through with anything really but I think that’s more me rather than, you know, the fact it being a clinical trial.

 Yes, I would. I, I think I’m slightly, not cynical, that’s the wrong word, but maybe slightly more pessimistic, or maybe that’s a bit too strong a word, about outcome of things now, and just think, “Well, we could take part in something that might show that it’s pointless.” And, and that’s worthwhile in itself, but not always to think that everything you do is just suddenly going to have this massive knock-on effect in medicine and open lots of doors. Which sometimes things do. But just be a bit more realistic I think or, you know.

 I would like to think that any trials that involved possibly days, mornings, afternoons, even overnight at a hospital that by the time we’re at that stage they’re freely giving you the information, and we know roughly that yes, things can go wrong, things don’t always go according to plan. But we, I would like to think that isn’t the norm. Yes, we all know that things can go wrong and it is just bad luck. They’ve not gone out of their way to make you stay in hospital even longer because it’s not what they’ve wanted you there for. So yes, I would like to think that providing they came to me with all the information that I think is relevant they could answer all my questions, then I would be saying to Jhon, “I think go for it” and that he would. I would like to think he’d say yes, but I can’t make him. I don’t have that right, even though I’m his Dad. And, he’s a minor. I think he’s old enough, maybe too wise, but at the end of the day the choice is his. And I’d like him; I’d like to think that he knows that I wouldn’t put him forward for anything that was going to cause him unnecessary discomfort.

 Yes, with as much information that we had yeah. We would want as much information. I mean I say yes, but you would obviously still look into it. It’s not something you, you know you just say oh yes blindly. But we would consider it again, yes.

 Yes, I would consider anything again, yes, to help other people, definitely.

 Nikki' I think it, I think it would depend. I think we would get, gather all the information is what we tend to do [isn’t it?] and say, you know, “What’s it about? Why, why are we doing it? How invasive is it?” And, you know, for the likes of Sarah you –

 Yeah, yeah, but obviously depends what it is. You know, like I said earlier if we’re looking at taking a lung then you know whatever then that’s a different kettle of fish. But as long I guess as long as it’s minimally intrusive not likely to have any have any detrimental impact or effect on her then yeah, no problem. 

 And now, that’s a, I mean because at the hospital where she’s seen for her heart, it’s sort of sister hospital does trials for nuts and that’s something I would take her for. They haven’t offered it to her yet but that’s a clinical trial where they do that where they rub a bit of nut on the lip and you have to, it’s all done in intensive care under very careful monitoring, and then systematically increase over a few days the exposure to nuts and that’s meant to, they have said that they probably wouldn’t offer it to her because she’s allergic to three kinds of nuts so that would be, you know, but then might peanuts which is the most severe allergy they might do. And that’s something I would consider but that would purely be for her benefit [laughter] yes, you know, that’s yes so that would be nobody else would benefit from that, that would just be her, you know.

There would, there would be a point. But I think it’s difficult to know what that point would be. Because I mean obviously a change in her treatment which may have direct effect on her health, then I think we’d sort of have to look into it more and understand more about, you know, the development of that particular drug, say, beforehand and how far they’d got and whether it was likely to be successful and, and things like that. I think, yes, anything which would have an impact on her health, then we’d consider. And I mean I don’t know what the point would be where we would say no, because obviously the only way that you get to see whether new things work is by trialling them. But obviously it’s that balance, isn’t it? Between letting somebody else do it.

Depending on what it was, yes. I don’t have a problem with research. I think it’s a really important part; it’s a major part actually in science. And I know through my own work, collecting data is just a must. So whatever can help in the future, I think. And I was quite surprised actually when we were told that childhood migraine hadn’t been researched. I think if it’s been about for as long as it has, I was, I was really quite shocked that it hadn’t. I thought it would have been a lot more advanced. But I do understand that there isn’t much they can do. Because, as we were told, as, as Dr explained to Toby, there isn’t physically anything wrong with the brain, it’s just the cells. So there isn’t much they can do.

 One of the studies I was going to be, participate, in before we knew about my genetic problem was a progesterone trial when you when you got pregnant you’d be given progesterone. My issue with that really was I I’d had three miscarriages by then and my issue with that was that if I was in the, the placebo group I wasn’t getting the progesterone and when you’re talking about whether it’s going to help you keep a baby that’s sort of a huge, it’s not like you’re taking a you’re taking a drug to see if you think you know does it work against aspirin. It’s like if I have this drug I might keep the baby and if I don’t I might lose it and if I’m in the placebo group I won’t know and I, and that would have been a really tough call to make. As it was I wasn’t accepted because I found I had an underlying condition. So I guess it all depends, it’s like if you were saying if he had cancer and you wanted to give him chemotherapy or a placebo group why would you want your child to not have the treatment because you were in the placebo group and you don’t know and then it it’s really tough isn’t it. I guess you really have to think about each thing as you come up to it; it’s not something you can just say we’d be in or we wouldn’t be in. It would depend on the circumstances. 

 Yes, yes suitable things. I think for my baby I would be even less inclined to do things which required physical discomfort for him, for example taking blood tests and things like that. I’ve volunteered to do that myself with some of the studies I’ve done. When I had an MRI I had to have two cannulas inserted, you know, which is, which is mildly uncomfortable. But I would, I would think twice before I volunteered the baby for that kind of thing. I think in his case there would have to be a much more direct benefit for him for example to have blood taken than just the warm fuzzy feeling you get from helping out with research, which, which, might with research which might ultimately not have a direct impact on your own health or wellbeing.

 I think I’d encourage my older children to take part in trials if they wanted to and I think I’d explain that they wouldn’t necessarily be any personal benefit to them but you don’t know if what you’re going to do is to benefit somebody else in the future. So yes I would, I would encourage them to take part and to think of themselves as citizens with a, with a contribution to make.

Nikki: Yes, but as I say, the number from the nurse and then to the consultant that she referred us to, that, you know, that we’ve got mobile numbers, emails, everything. You know, they’ve been so approachable and nothing’s been any trouble. So, you know, we were phoning that nurse most days [weren’t we?] in between going to see the consultant and that. And, and she was great. It never felt like, you know, “Oh, it’s them again.” It was, “Right, okay, what’s wrong?” Even when we repeated questions or I’d found, you know, because she said, “Don’t go on the Internet and, you know, looking at Wikipedia for adrenal insufficiency, because you’ll get terrified.” But you can’t help it. You’re going to do that. You know, it, it’s like this site. If I’d have known that this site was there it would have helped us, wouldn’t it? Just to, to have that realism that somebody going through it and come out the other, the other end. Because you, you just, our world just went to pieces, didn’t it?

If it had been a change of, a different treatment, or, wanting to try a different treatment for her, would you still have been quite as keen?

 Studies show that most families and young people would like to be told about research that’s relevant to their condition or their family. But often health professionals, doctors or nurses are reluctant to place an extra burden of research on a family that may have a lot of other worries about the disease or their child at that time. Indeed there are studies coming through now which indicate that families who wanted to take part were not given that opportunity. It’s really important that families and young people who want to know or are interested if there are research opportunities to improve their care speak up and indicate to their doctors and other health professionals that they are interested in hearing about the research. It doesn’t mean they have to take part, but they may well want to know what’s going on and think about the opportunity to participate in that study. And doctors and nurses need to recognise that families are increasingly interested in hearing about the research opportunities and giving, being given their own choice to decide whether or not they can participate.