Yes I think when families do say that they want to take part in the study it’s a two way thing really. We’re obviously offering them the chance of potentially better treatment or not and that’s what the study is about. And at the end of the day that’s something that we always explain the fact it is a trial means that it’s never been proven which of the drugs, say for example is better. Because if it had been proven it wouldn’t still be a trial so we, you know, we don’t know for sure. We, sometimes people can say oh I think, you know I’ve used this for years and I’m sure it’s better and I’ve done my own bit of, or sometimes I give this and sometimes I give that and certain children do better. But the fact that it’s had to go to a clinical trial means that it’s never been proven which is a key point that families need to, you know, be aware of really.

And certainly where I had worked at that point, I often worked in the infectious diseases unit in and knew cystic fibrosis people had come in with it and, you know, that once you get it it’s quite a severe virus and that people who immune are compromised get it. So I think for us from that point of view because, I think had he been a surgeon or something he might not have been that caring. But his [husband] main thing was if she can get, even if she only has a 50% chance of getting the vaccine it’s got to help her. So, you know, so that was my main motivation I suppose. I mean for us the risks of her taking part in a trial versus the risks of her getting RSV. RSV was by far the worst case scenario. So her getting the vaccine potentially outweighed the risks of, you know, for us that was, you know. Even though we don’t know which one she got and we had no guarantee of her getting it so. But it is certainly extremely expensive. So it is very, very she would have had no chance of getting it if she hadn’t taken part in the trial. It was very much, it’s very carefully screened who gets it and that is really on a, you know, you have to be really unwell before you’re considered to get it so I think this was one way of her getting it or potentially getting it with would be the only way of getting it.

When you made the decision, did, was there any thoughts about the, the benefits to your son maybe?

Yes, I mean of course it, it would be. it’s difficult isn’t it, because no matter how selfless you try to be, I mean if there’s benefits to our children then we grab it. So yes, although it’s a kind of much wider spread than that. But, yes you know, if there was some benefit or some, you know, hint of something that could be helpful, then of, then, then of course. So, yes, from a very selfish perspective, yes, yes, of course. Like most people I’d say.

And my son’s then neurologist turned round to me and said, Well, funnily enough my colleague has just started doing a clinical trial on using this diet So I immediately jumped at it and they tried sort of explaining what the clinical trial was and I was kind of, I didn’t need it explaining to a certain extent because before I’d given up work to have Matthew or when Matthew had started seizing, I was actually a clinical trials monitor, I was, I’d worked in monitoring like medical products so I was aware of how closely monitored people were on clinical trials. So to me, it was a huge benefit because I had an inside knowledge that it was a clinical trial and I knew Matthew would be very closely monitored. So if I was going to do this diet that I’d been told was disgusting and horrible and all the rest of it, then at least I knew he would be very closely monitored by doing it, so I was even more keen. To me it was a big plus factor because it was the treatment I wanted and it was part of a trial.

Yes, no, that’s interesting. And I did think that. And that was flagged up for us by the research nurse, was that you’d have more clinic appointments, you know, and that could be, she didn’t, she said it in a nicer way and a bit more subtle way, but actually that could be of more benefit. And I remember my husband saying, Well, look, you know, they get to check your blood pressure more and whatever And you kind of think, Yes And then actually when you think about it you think some of those things could be done in your GP’s surgery actually, to be honest. You don’t need to go to a hospital and have a consultant to do all of these things. But does that mean we’re being better monitored? You know, it’s a very attractive suggestion. And so maybe you think, Yes, I’m going to go with that But then does that then indicate that the level of care if you don’t do it is substandard? You know it does, implies that if you think that, so that’s slightly tricky. And I’m sure that does play a part actually in thinking. Although I think that would be the wrong reason to do something, I have to say, for us. I think you have to be accepting that the baseline care that you’re given is adequate, in fact more than adequate. But, yes, I do remember, no, I do remember that coming up actually, yes.

Yeah, I just, we just done it for her really because like she’s you know, I didn’t want her to, like when she was at school being the littlest, I mean when she did start school she was tiny. At school she was the tiniest one at school. And like people just kept picking her up like a little doll. You know, and she didn’t like that, you know she didn’t like it at all.

Yes, yeah. And we sat down and we was looking on the internet and we was, we was just sort of like doing a bit of research really on it before we decided. And then, it, what it was like when they reached 16 or 17, when they want to drive and they’re only like 4 foot and they wouldn’t be able to reach the pedals do you see? You know? And your daughter or your son is going to turn round and say, Mum why didn’t you put me on the growth hormone You know. So we done it for Courtney’s benefit really. And we done it you know, and for her like obviously being small, because

Okay, Callum started clinical trial three years ago because, and he’s on growth hormones because he was born prematurely weighing two pound twelve, and never caught up growth. So as he was small we decided that he needed something, and we got introduced to the trial. So we decided that to put him on, on it.

Yeah. I mean when, was that, were you invited through the hospital?

Yeah. He had tests and his growth hormone level was lower than it should have been.

Quite a bit of information. There’s things I suppose with everything you learn on the way as well, because there are different tests and things. They just say, Oh well they’re going to have a Dexa scan which at the time you don’t know what a Dexa scan is, and different blood tests and different things which, going into the trial at the time they tell you which some people wouldn’t know what are unless you go for it.

Did that worry you at all, not knowing?

A little bit, yeah. Because not knowing like what a Dexa scan, and scans and things are, but like I knew what bone age scans and things was because I had them myself when I was a child so I’d been a child in hospital a lot, so having Callum go through it as well was different, he was very tiny and I knew, they said that he would only get to 4′ 1 if he didn’t have no treatment. So we decided that for Callum’s best, being a lad, if he only got to 4′ 1 on the [long hole] when he was older it wouldn’t be fair on him. And ever since being tiny he said he wanted to be a fireman and that, and knowing at 4′ 1 he’d never reach it. So that was one of the decisions why I decided to put him on the trial.

Nikki’ It was to put our minds at rest that there wasn’t a problem, with her being so ill and with her being very small, that, that there wasn’t something going on that we’d, we’d missed, which it turned out that there was, but, so that, that’s what made us. We, you know, we knew that she was too ill for there to be, for her to be okay and there to be nothing wrong. And it’s, you know, they were saying, Well, let’s put your mind at rest So it, it just seemed win-win all the way round. You know, we were going to be taking part in a trial which was going to help someone and we were going to get to find out if the drug had had any effect on her immune system. We had no idea that, that the drug could cause such damage.

I think because the trial was going on, I think they saw it as a way of, because, to be honest, her, her consultant didn’t think that there was, there was going to be any problem. It was about, I sort of felt a little bit like a neurotic mother. You know, All children get ill, you know As though you were, you were trying to say there was something unusual, but there wasn’t anything. Because the trial was going on, I think they saw it as a way to put my mind at rest but to have somebody take part in the trial. But, but nobody mentioned what they would have done.

Chris’ And the only effective way at the point to check out for cortisol, synacthen tests, is blood tests.

Nikki’ Is to do that test. So, so while you’ve got to do it anyway, why not be part of the trial? Which, you know, to us was just like, Yes, grea because we just wanted to know, Was she okay

Well I, just because the, you do listen to the, what’s on the news and read the papers, and you, and you just think is it really? And we had some friends who, she was pregnant and she’d taken the Tamiflu was it? I think it was Tamiflu it was called. And she’d actually miscarried. So we knew that it was quite a serious, a serious flu bug. Whether it, I mean it actually transpired it wasn’t as bad as they thought it was going to be, didn’t it really? But I mean healthy children were obviously becoming quite ill with it, and we thought well she would have had the actual vaccine, so we were happy for her to have the vaccine early is the way that we looked at it. Like I said my other children wanted it as well. They weren’t invited.

And do you think that fear thing is a big trigger as an incentive?

Well I think it’s a survival thing isn’t it, you want to look after, and a protective, you want to protect your children. And you do that in whatever way you can, you know, and we wanted to protect our youngest because she was in the most vulnerable age group. You know, so, that’s why we did it.

Okay, with last year’s extreme anxiety which I feel was enhanced by media coverage of the swine flu threat we were interested my husband and I when our hospital Trust e-mailed some employees to see if they had any children who would be willing to take part in swine flu vaccine trials. Because of our concerns with our son who is asthmatic we thought that might be an idea to get him vaccinated prior to these vaccines being released because at that time we weren’t sure when they were actually going to be released. So we answered the e-mail and we were contacted again and asked to take our son who was at that time 11 to a children’s hospital locally where he was seen and assessed for suitability to take part in these trials. It was explained to us there were two different types of vaccine and they were being trialled to decide which would be taken on board to be given to the population at large. We had it explained to us that the vaccines had different constituents and we were talked through those. One had a mercury derivative; were we happy with this; there was no threat etc.etc.so we understood that.