I was having quite a bad period of health I think. My lung function had gone down quite a lot and I think, although my lung function had gone down it was still in the relevant kind of ranges to be on a clinical trial, that this particular clinical trial of Mannitol. So I basically wanted to do anything I could to try and get my lung and help and I was invited by, we’ve got a research nurse at my hospital where they we have CF care, and she leads all the clinical trials and the consultant there he liaises with the research nurse to get all the ethics approved etcetera. And I think they just approach patients that they feel would be happy to be involved with the clinical trial or fit the medical criteria. Because obviously there might be loads of people that want to take part in the trial but if they don’t fit the medical criteria they can’t get involved. And I think because I’m quite a compliant patient as well I think they knew that they I could they could rely on me to kind of take the medication every day and record if I had, you know, any side effects [noise] or anything like that which, I think they could rely on me which is quite a big thing if you want to get good data so.

I think a barrier might be, so as I said when I was younger we didn’t do anything where I had to have another blood test. So if there’s a particular procedure involved that you don’t really want to do then you’re very free to say no. But even if it’s something that only, you know, that only mildly inconveniences you, like I had to have these bronchoscopies, you know, it’s not exactly a fun thing to have but you think well it’s worth it to put myself through that for the benefit that the trial gains from it. Or I mean there was another, with the pilot study they had this worst test ever, they had like a wire pipe cleaner brush that they’d stick in your nose and go whoosh and take it out. And it’s really, really uncomfortable and oh it was horrible but in doing so they got a million epithelial cells from each nostril doing it so, and the doctor doing it said I know these are horrible we’ve done them on, we’ve done them on ourselves as wel but the amount of data we get from it is incredible. So I think perhaps sometimes maybe for young people to try and see past the, you know, slight uncomfort they may have to go through for the greater gain that it brings yes. And I think as, as a facilitator as I said being a young person on the gene therapy trial if I’ve got a chance of being one of the first people to have gene therapy and then to be on that drug then that’s a, a really great opportunity for my health. So even though that’s a yes it’s not a financial incentive it’s still a really good incentive to take part.

I suppose they can be quite time consuming, if you don’t fit it in with your normal routine. I managed to fit mine in with my routine quite well and it was actually saved me time rather than anything else. But I suppose it depends what you sign up for, it depends what kind of medication you’re going on, or what kind of research you’re taking part in. And I actually quite liked being part of the study because it meant that I was kept, my lung function was kept an eye on quite closely and the bugs I was culturing were kept an eye on quite closely. And it means that if anything was picked up I could start on a new medication that would treat it so it was actually quite nice. So I was getting kind of really really, well I don’t know everything was kept an eye on quite closely and it meant that I could either change my physiotherapy regime like to increase it so that my chest would be better, or I could do more exercise, or the doctor could prescribe an antibiotic if I was culturing a certain bug. So I thought it was quite, I found it quite nice. But some people I don’t know, I’m quite conscientious with my CF and I like to do as much as I can, whereas other people might not.

Yeah.

So they might find it a bit annoying having appointments because of the trial and things but I quite liked it because it meant that I could.

So in a way you were getting closer treatment, closer, they were keeping a closer eye on you.

Yeah, yeah.

That kind of gave you a nice feeling?

Well it just meant that if my lung function was dropping it could be the problem could be looked at straight away rather than maybe leaving it a month and then think, feeling really really ill. So if I felt ill they could treat me straight away rather than maybe leaving it a month or so, and obviously prophylactic treatments are the way forwards so.

I mean did you have to sign something first before
you

I really can’t remember. I don’t think I did. It was
such a long time ago.

Were you worried at the time?

When they said about the silent fractures and
everything I was quite worried. And I was like, I think I do want to because
they’ll keep a close eye on me then with the medication that I’m taking

Is that why you, perhaps one of the key reasons you
took part?

Yes, and to help, because they said it’s such a rare
condition that they have to go all, around quite a few places. So I was just
helping because there weren’t that many people to take part in it.

What were the key reasons, do you think, you wanted to
go and take part in the trial rather than have the standard?

Because I know from experience, like my mum has MS and
she was on a trial for ages and ages and it really worked. And so sometimes it
does seem safer going with the kind of more commonly used option. But it kind
of, that also kind of made me think, Well, they come out with new drugs all
the time. And, you know, they’re not going to be offering it to me if it
doesn’t do anything. it’s not like a placebo

I felt like, yes, I did feel like that if I could help
someone and someone could have, you know, a much easier road to recovery
because of something that I did, it made me feel a bit better about it and that
my suffering, being sick was worth it for someone else.

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, 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.

Well I’ll answer the first with respect of the leg rash that was actually, interestingly I had a very last appointment with them that day and then the rash turned up in the evening. So technically I had finished the trial by that point when the side effects happened. But with the losing my voice, I did wonder do I want to put myself through another bronchoscopy. And then I think I possibly took the approach of well it can’t do any more damage than it’s already done so I may as well carry on and I’ve got this far. And there was also because on the pilot study it wasn’t double blind because that was a sort of Phase 1/ Phase2 trial. So it was on a small cohort but we all knew we were definitely having the gene therapy. And so to have the opportunity to have a dose of gene therapy was, you know, even if it might not work, its full effect is still well it’s exciting scientifically but also a great opportunity medically for myself to get that.

So is that a personal benefit for you?

Yes I think so and also if so if on the multi dose trial, you know, if everything goes well and then it all progresses and your through to the end then by being someone that’s taken part in the trial you will then have preference to be on the drug once it’s finally finished and released. And so that, that’s always the benefit you can hope for as well.

Is that an incentive or motivation to take part, personal?

I think it is partly yes. Yes as I say as far as this gene therapy trial I think it’s partly being what I said earlier about wanting to give back and contribute for future generations but then also partly the chance to end up being on gene therapy from the very beginning, you know. As soon as I can and yes.

Jenna’ Because like all the other options were like sort of injections you have to do yourself like in your leg and stuff. And I don’t like injections. So I didn’t really want to do that.

So by taking part in the trial, hopefully taking a drug instead of injections is that what will happen?

Mum’ Yes, she’ll stay on the, having it by drip until, for the foreseeable future. Whether they’ll, in the future they may turn it into an injection, I don’t know. But at the moment it can only be given by drip.

I mean what was, what’s the key, your motivation for wanting to take part? Why do you want to do it?

Jenna’ Because like to sort of like take all the pain away and like not make it flare up. And to like help like the hospital develop new ways of, like more medicine, like get more ideas of what’s happening and stuff.

Well, there were other options of drug trials I think, and there was loads of other medicines. But like they were injections. And I thought, Well, I want to do the trial because it’s like helping other people. And it’s like a better way of taking like medicine Because I don’t like injections.

And, so what, your motivation for, or the reasons for taking part, what, what were they?

Just to get some more like normal stabilising ability or anything, just to be a bit more normal, a bit more active. You know, what, as I said earlier, I needed help to do everything from cutting food to going to the loo. I didn’t have a life. It was just being here. So I didn’t, I was getting quite depressed not doing anything. So it was just kind of, Yes, okay, we’ll do this and hope for the best. So, yes, that was kind of my main point. Even if it made me 10 per cent better, I would be happier, I could be a bit more normal. Even if it made me better one day out of a month to a year, I don’t care, as long as it was something I can be looking forward to.

So it was kind of quite a low really?

Yes, it was probably one of the lowest points I’ve ever been, to decide, Okay, what do I want to do here? Drug, no drug? What’s going to happen? really.

So you kind of made the decision. Did you make it quite quickly?

I had, I thought about it, but I thought about it for a couple of days and then I decided that I wanted to do it. And I wanted to do this trial because it was the first trial that I’d ever done including, for diabetes. And to me, I felt like because I didn’t have a good time to begin with doing it, I wanted to help other people. And if this was one way that I could help them in the future, I wanted to do that.

Do you think that was your key motivation for taking part?

Yes.

Helping others? Was there some personal benefit as well, do you think?

I wouldn’t, I don’t know at the moment. I’m halfway through the trial, but the only thing it seems to be doing is hurting more. So not really.

But at the time when you were making the decision, did you think, It might help m?

Yes, yes, I thought that would help me. And I also thought that if I did the trial I might feel better about myself and better about having this illness, kind of disease kind of thing. I don’t like it.

So why do you think you, you, taking part in a trial, what would be your key reason for taking part? What would be your motivation?

Because it was, it was like not like school. It was like fun in a way. And it like, it taught like us like what, what to learn, what to do with our condition.

And at what point were you invited to the clinical
trial?

I don’t know,
I can’t really remember it that well bit I think it was about January.

Was it?

Yes.

Was it when you were in hospital?

I don’t know
I think so.

What happened, what did you know about it?

I don’t know
they spoke to my mum and dad quite a lot so I didn’t know what was going on.

Ah okay.

It would be
one day you’re going up this hospital then you’re going up the other so it was
all quite a shock to me.

Was it?

Yes.

Did they talk to you about it about what you were
going to do?

Yes they,
well they did like talk to my mum but they said they’d talk to me more because
I was the one that was actually going through with it, so yes.

Do you remember anything that they told you at the
time when they talked to you?

Not really.

No?

No.

it’s all gone now hasn’t it?

Yes.

it’s in the past.

Yes I kept
having like loads of visitors telling me all this stuff like doctors but I
can’t remember any of it really.

And when you took part in, you say you took part in
a clinical trial, do you know what the trial was about or what the purpose was?

No.

Do you think you would like to have known?

Yes.

Did you think to ask anybody or not at the time?

Not at the
time no.

Why was that?

I don’t know
really, I just didn’t really think about it I just wanted to get like, you
know, get better and that.