Clinical trials & medical research (young people)

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 nebuliser” 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 minutes” 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.  

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. 

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. 

Well, it’s like you know everything, so nothing’s like hidden. They don’t… Because 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. 

I don’t know. You, “Ask questions about it and just make sure that you’d want to do it before you took part.” But never be afraid, because they’re actually very nice. Because sometimes you get a really big reward that you’re doing it, because of it. So it’s a nice thing to do. But at the same time you’ve just got to think, “Would I like to do it? And if I don’t, well, then…” Just, you can also ask if, like we asked, “If, if I didn’t want to take part, was there anything else we could do?” because we didn’t want to do it. But in the end I took part, so I didn’t do anything else for that. But, I don’t know, “Go for if you want to. But if you don’t, it’s not a huge problem at all.”

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.