Yeah, I say that taking part in research and clinical trials. There is quite a lot to think about and to consider, and for example, I suppose one of the big things is that you could be selected and you could have the placebo. So you may think that you’re taking part, for example, in the gene therapy trials if I had been selected or if I had chosen to take part in those trials, it’s I’m sure it’s a big undertaking and a big decision to make and a big commitment and it may have been for however long the trial lasts, every time you go to the hospital to receive what you think is gene therapy you may actually just be getting, you know, a blank copy of everything because you have to have that in a study. So you might be putting yourself through so much and hopefully thinking you’re going to have the benefit at the end of it but you may actually just be like the control. So that would be something you have got to consider that you know there are going to be people which aren’t actually receiving the drug or the treatment and that’s something you need to be aware of and that should be explained clearly.

But I think the main thing is thinking about, although it may be a time investment for you, or it may be something extra you have to do every day for a few days or a week or even a month, or a couple of months, think of how much it’s going to help people with your condition in the future, and think how much although you’re investing your time and effort into it, it will save whatever you’re doing could potentially like either save lives or save people time or give them you know longer to live in what you’re doing. So in the short term it may feel like a big undertaking but in the long term what you’re doing is yeah and even if you are a control in the study you’re still, they still, they need those people and it you’re still benefiting others in such a good way. I can imagine you may feel quite disappointed if you find out after that you have been used as a control or had that placebo but it’s, you’re still very much an important participant.

Yes, well I guess I’d say I don’t know I guess to try and, even if it’s a trial that you might not benefit so much from, to try and see past that and see, you know, as a person with Cystic Fibrosis, you know, we are a community as it were. And to look out for your fellow people in that community and the people yet to come in future generations so because you can’t get a person without Cystic Fibrosis to do a trial that needs a person with Cystic Fibrosis. So it’s a responsibility in a way yes.

And I think it’s for young people you have to realise that in order for things to develop and for progression to be made, like since, I can’t even describe the difference in like my treatments from when I was diagnosed at the age of eight to now when I’m twenty two. And like one of my friends was round last night and he looked and said Is that your nebulise he said Do you remember when you were like ten years old and it was like this big and you had to have tubes going out of the window and you had to have all this and it took like twenty, thirty minutes if not longer per session and now it’s about that big and it takes two minute and he’s just like, I can’t believe the difference. And all that’s come from clinical trials and from research being done. And you know the different ways, my treatments that I do now are very different from the ones that I had when I was eight years old. And without people taking part in research none of that would have been able to have, you know, have been developed and I would still be stuck doing

The huge nebuliser?

Yeah and the solution which I use now to help me loosen my mucus in the morning that wasn’t available when I was first diagnosed and that’s been developed through research and trials. And now I don’t think I could cope without it. So I don’t, it’s just you know the benefits of taking part although you may think on a personal level it might not benefit you immediately, in the future it will and it’s not just going to benefit you but so many people.

Do you think it’s
important that children do take part in trials?

Yes it’s taking a risk on your life so; in the grand scale of
things it’s taking a risk on your life so other children in the future don’t
have to take a risk like that. And it’s whether you’re willing to make that
sacrifice.

And that sounds really hypocritical because I didn’t make that
sacrifice but still.

No but you made a decision and that’s, it was a
good, that was your decision and I think…

I mean I consider that, I mean people; I mean children would be
quite reluctant to take that risk. But they’ve got to understand that these
drugs have been tested in other ways, they’ve been tested on healthy people
first so it’s not like they’ve just randomly produced a drug and they’re giving
it to you, there have been tests done before so they know it’s a fairly safe
drug. And that’s the key message that doctors need to get…..

Get across to
young people that they’re safe?

Yes, that they will do everything in their power to keep them
safe.

That’s very
important.

And safety to a child is a big deal. it’s like feeling safe in
your own home; it’s like feeling safe with your family.

I’d say definitely take part. don’t like, don’t hesitate about it, because it’s, it will definitely help you. And plus you get a reward. So it’s good as well in that way. And it could help other people that have just been diagnosed. Because the hospitals, they give a, quite a lot of information, but they don’t go into loads of detail about like how you’re going to cope with it at school or at home. So they could just like because that trial could really help them when they’re at home if they’re like struggling or they’re forgetting to do blood tests. And, and if they’re always feeling ill they can just, say, say if you’ve got like problems with the diabetes, if you’ve done that trial it will definitely help you with them. So then you know for the future.

Yes, I’d say to them, Definitely take part Just, I’d say, Even if you do, even if you just think, Oh, no, that’s nothing to do with me.&rsquo it’s like I’d say, Even it, it helps, it helps every, everyone trying to get over it and get used to it

Because everyone who gets diagnosed and didn’t know, it’s a big big shock to them, and just a different, change of lifestyle. And taking part in research, it’s not only helping themselves, it’s helping everyone to deal with it. Y

Mum’ it’s very positive, isn’t it?

Yes, it just, yes, it gets you through it and makes you think, At least I’m helping other people as well So, yes, I think it’s, I think the research is brilliant.

Yes, I was going to say something. Yes, I think I was going to say, yes, to, to people who’ve got it or got any long-term illness, I would say, As soon as you get it, you, you, you, you have the thought like, Oh’ like, Oh, I can’t, like, you know, I can’t be bothered’ and, Why is it happening to me?’ But like, you know, it’s just, just the way things go And I’d just say, Just carry on and fight through it, because it’s not the end of the world Which, you’ve got to be a strong-minded person. If youre, the more strong-minded you are the easier it is to get through it. That’s all.

Well I just
think that it’s a good thing to do because it does make you understand more,
you know, like what, why, why you may have it and stuff because obviously the
options are like obviously there was one which is actually the proper reason
why, so it does make you understand a bit more of it. You know other people
have it and they think of like this type of thing. I just really enjoy filling
in because I know that other people have to fill them in it’s not just me.
Because I know that they get sent off to like 100s of other people that have
the same problem as I do.

Does that make you feel like you’re contributing?

Yes.

Yes, so that makes you feel a bit easier really,
you’re not alone?

Yes.

I think that,
I think it’s good because obviously they could help others which is helping
themselves. So I think it is a good thing to do but obviously like people don’t
have to do it obviously if they don’t want to then that’s fine but you know
like people are like oh I guess I could it is a good thing to do type of thing.

Well I’d say
I’ve got like I told them that I’ve got arthritis and they go what’s that and I
go well that’s where you’ve got pains in your body and like I’ve got it in all
my joints. That’s when. and I told them I was in a clinical trial after I got
told and they went what’s that and I went well it’s like when you’re part of
like a programme and you get asked questions and sometimes you get interviewed
and people talk to you and ask you, give you sheets to fill in.

And did it make you feel good to take part?

Yes. Because
then I could tell people like what it’s like to have arthritis and I’ve got
arthritis.

Get as many opinions as you physically can, not just from your doctor. If you have a family friend who knows about this kind of stuff, speak to them about it. Because the jargon they give you is horrific. Googling, dictionaries don’t have half of it. So you do really have to know what you’re on about. Certain people swear by their drug trials. Some people go, No I’m still kind of undecided. I’m hoping for the best. And maybe nothing will come out of it. Something may come out of it completely. it’s a really open sort of thing. So keep your mind wide and give it a go, if you have to.

In terms of the terms like clinical trial, were there
any terms that they used that you didn’t understand?

Not really. The fact that I can’t pronounce the name
of the drug maybe. But that’s not really their fault. No, there wasn’t really
like, there are times that you do feel a bit like way out of your depth. But
it’s usually when doctor’s kind of talk among themselves in front of you about
you, and you just feel a bit kind of weird. You feel like you’re not really in
the room. It is a bit strange. But there was never kind of a conversation I was
meant to be part of that I didn’t understand. And if, you know, if there wasn’t
something, if there was something I didn’t understand, I’d just be like, I
don’t know what that is. You’ll have to explain it in normal people terms, not
doctor terms

So you would, you would ask?

Yes.

Well, it’s like you know everything, so nothing’s like hidden. They don’tBecause like during the trial there was a woman, like an older woman on it and she died. And they like came and told you. And they said that she was on a lot of other medicines and she was like quite ill, so there was a lot of ways she could have died. But it wasn’t necessarily that. So they don’t like sort of keep everything hidden. And they’re all really friendly and nice and look after you. So it’s quite good.

Just get as much information as you can. Reasons, pros and cons for getting involved, how is it going to benefit you, will you get reimbursed for travel expenses, can you can you drop out at any point. You know what are the side effects? If you know if you do get these side effects can they treated quite easily. Yeah, just get as much information as you can just be fully informed of the drug, well it depends what item if it’s a medication just get as much information as you can about it, on duration of it, just yeah just be fully informed, fully informed on everything.

don’t do it if you’re very forgetful. Because it won’t help yourself or the trial. And you’ve just got to be motivated to do it. Otherwise you just will forget or you won’t be bothered to take it or things like that. Because it is quite difficult being, it may not sound it, but sitting up for half an hour having something to do when you just want to go to sleep is not the best thing. So, yes.