Would you have a message for them about young people taking part in clinical trials?

Yes. I could tell them to like do it more often. Because this is the first one I’ve only took part in. And it would like, it, it would definitely help like younger people that have only just been diagnosed. Because my mate’s been diagnosed not long ago, about a week ago I think, and he’s, I’ve been helping him as well. So it can help people a lot.

Joe’ I think I, my experience was, well, I mean it’s not, never good, being told you’ve got something like that. But I think everyone was really nice to me and helpful and really helped. But the one thing I would say is just carry on with this research that everyone’s doing, because it makes everyone feel reassured that there’s people helping them and looking into stuff.

Mum’ For the future.

Joe’ Yes, just for other people, to help them deal with it and stuff.
That’s a really good answer.

Mum’ We couldn’t have had, had it any better
Joe’ Yes.

Mum…in the situation.

Joe’ I think the research is really good, what they’re doing.

So it’s quite a key thing then really?

Mum’ Yes.

Joe’ Yes.

it’s not the most thing, but it’s certainly helped enhance your experience?

And I’d like to say that I’m very grateful to them people who are just doing this research, because it’s, I think it’s better for everyone really.

Is there anything that would have made it better for
you or anything that you would have liked to have had that you didn’t have?

I think I just would have liked to have had just like
facts, pure facts about the side effects, like, This will happen Because I
think it just, it came as a surprise when, you know, I wasn’t able to go
running or to go to do this or to do what I would normally do. And I think I
just needed to be kind of told straight, like, You can’t go to school and you
can’t be socialising with people that are really sick because you’re going to
get sick and you’re going to be worse. And if you cut yourself it’s not going
to, you’re not going to heal as quickly as you did And I think those are the
things that I wish I’d known. Rather than taking a month and knowing not being
as careful, and being really scared when I got cut and I wouldn’t stop
bleeding, and waking up in the middle of the night and have blood and be like,
Where is this coming from and realise like it was something that I got two
days ago still bleeding. I think those were, those were the things that I wish
I’d known, because I would have been much less kind of worried at the time,
thinking there was something else wrong. Because I never w-, I never ever
worried about things before. But when I got sick, everything was like a sign
that I was getting worse. And it did terrify me. So I think if I’d been given
like just f-, hard facts about kind of the side effects, so that I wouldn’t
have been worried when they did happen, I would have felt a bit better.

Yes. I think because I was younger they didn’t want to
kind of upset me. But, you know, like 15 and 16, you know, I think you can take
it.

Yes, I think I was in [the hospital] and then I was having the treatment but it weren’t working properly. So the, my doctor decided to put me on a new drug to try it out. And then he give me all these forms but I didn’t quite know it because there were like all long words in it. So mum kept that and try and read it to me.

I wondered if perhaps one of, the doctor or the nurse sat with you and explained things?

And that happened as well.

And did as well?

Yes. Because they just went over it to make sure I understood what was happening, what was going on with it and if I was happy with it happening.

And were you?

Yes

Did you have any questions at that time?

No. But once they told me about it I was a bit all right with it because, because, I, I think I was all right with it because it was better than having a needle every week.

Do you think there’s a better way of perhaps giving information to you about the trial?

Yes, because it wasn’t very easy for me to read, so I didn’t really get much of it. Because it, they were just using big, big long words I couldn’t really understand.

And you didn’t like to ask at the time?

No.

Is that because you, because it was all a bit too much and —

Yes, and there was a few doctors I didn’t know there and it just felt a bit weird.

Did it? But you, but you think they, if they made it sort of much more —

Easy to read, then I would have got it a bit.

Perhaps break it down into smaller?

Yes, because it was just a big sheet with just all writing on it. Just reading it was making my eyes go a bit.

Do you think they should do more pictures and things?

Yes.

More illustrations perhaps?

Yes. Try and break it down a bit.

So how should
researchers and health professionals inform young people about taking part in a
clinical trial?

I mean they should talk to
them and I’ve said this from when my treatment started. Doctors and researches
should not talk to the parents they should talk to the children because it’s their
lives not their parents.

And how…?

I mean they should talk at their level, they should learn they
should be trained to be able; if they’re working in paediatrics they should be
able to explain anything to a child of any age because surely that should be a
qualification of a paediatric doctor. Any paediatric doctor should be able to
bring it down to a child’s level.

So do you think
then, how should they do that, is that both in conversation and in leaflet
information?

Yes in leaflets and I think it would be really good if patients
are given like that link to a researcher or a doctor who they can turn to for
questions and they have a direct conversation with them. So that they know that
they will always have somebody there for reassurance. And that way, I did
really well because I made a really close bond with my consultant, we were
really close and that way I did really well because he spoke to me and not my
parents.

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 would say maybe like a course of some sort. Just, maybe just a few one-hour sessions just to like make my understanding of diabetes a lot greater than it is. So maybe just a few, not necessarily so formal, maybe a bit more relaxed like a, just like everybody talking about it, and, and a doctor or a nurse or someone just explaining how insulin works or how your body works or reacts to it orjust something so you get a bit more of a understanding.

And if you could change anything to improve your experience taking part in the trial, is there anything that you would do to improve it? Or that they could do to improve it for other children in the future?

In the future I suppose they could like, like they could, I suppose they could like, like make it clearer, if you know what I mean?

Clearer? Which bit to make clearer?

Like, like they’d start, but then as they got like towards the end the words would like start going deeper. So they, theyd, they’d speak, speak like that [expresses high tone] but then they’d go like this [expresses low tone].

Perhaps they were getting tired, do you think? So it wasn’t so much the words, it was how they expressed.

Yes.

And their, perhaps their tone began to slow? Did they lose that sort of fun element a little bit as the day wore on?

Not really.

No? That kept going?

They were really funny. Because like it weren’t just us taking part, it was them as well. So like they joined in as in, so like it weren’t just like a school thing. It was together.

Yes, I’d want maybe
the calcium in a tablet, I’d find more easier to take, instead of a drink. Yes,
that’s probably it. That would, I think I’d remember it more, taking it just
with all my other tablets.

I think that’s a good,
quite a good point really. Because it’s not always what you do, it’s how you do
it, isn’t it?

Yes.

And especially if it
doesn’t taste very nice.

At least you can just
swallow it quickly, as it doesn’t taste as nice as a tablet.

Maybe, for people, because I suppose I’m quite a visual learner and having and I learn from doing things. But maybe for someone that likes to have things written down there could have been a step-by-step what you have to do. So if you got home and you suddenly forgot like what order do I have to do it in, because there were a few little things to think of, it was quite simple but when you’ve got a lot of other things to think about as well maybe just like the three steps of how you take your, how you take it and how you record it, so written down clearly.

I think that’s quite useful information, important actually, because I was going to mention that you have to be quite organised?

You do.

With all the other things you have to do and other people will have to do the same. And then this you have to be very…?

Yes, so having it, having it written down and just a reminder that how many times a day you have to do it. That would that would have been useful. And I suppose for any research or clinical trial that you are taking part in if you do have to do something at home a few times a day having it written down as a reminder or even getting it emailed to you something like that would be useful.

How could they, or is there a way of improving it?

Well, they could, like say if I wanted it to go faster or something, they would like try and like speed things up possibly. I don’t know.

In what way speed, speed what up?

Well, try and get all the information through faster. But they do it quite quickly already, so like there’s.

Do you mean the information they’re collecting the data over three years?

I mean like when they take my blood tests, they have to like check it and thenWell, they text my mum to ask her to weigh me, so then they could like get the right dosage for the medicine. So that speeds things up a lot, because if I just get weighed at the hospital and not at home, then it takes a long time to make it. But it’s already made for me now. So they’ve speeded it up.

Yes. But the problem
with the hospital, where, because it’s the child’s ward and it’s a child’s
hospital, there’ll be kids running around playing. So it’s quite frustrating
when you’re trying to read or do some work when you have screaming kids around.
You kind of struggle along. So if they had something for that, it would make
life a bit easier.

So you think like
somewhere for you to study [yes] for your school and that?

Yes, even, even like a
quiet room for people over the age of 15 just to work, because there’s a lot of
people who probably have the same problem, not even on trials.

I would like them to
kind of speed it up too. Because, as I said, you lose a day. A day doesn’t
sound like a lot but you can, you can lose kind of essays or anything, college
or university applicants, interviews. The list is endless. So if they could
speed it up and kind of fine-tune it for ages, it would be a lot more easier.

Well as I say, I recently, only with my first experience very recently have taken part in research and trials and it is something that I’m a would very much like to get more involved with, but I just feel like there’s not enough communication or information out there.

Like for example, if I decided that I would really like to take part in a study I don’t know how I’d go about that and I don’t know how I’d go about becoming involved in clinical research. I recently took part in a telephone conference with a few other people that have cystic fibrosis and we all we all felt the same and we feel that there’s, we feel that there’s a need for a source of information that explains all the clinical trials that are going on in the country for people with cystic fibrosis, and how you can take part in them, and what the researcher is looking for, like what sort of participants and what is the exact criteria. And how you can get involved, and then when you do get involved or what it, what studies are going on at the time and what trials are going on at the time, what are the results of recent trials that have taken place. There was a girl that I was chatting to and she was saying she’d taken part in a study and when she, a clinical trial, and when she explained it to me it is something that I’m really interested in. it’s a treatment that would save me so much time every day when she explained it to me, but I’ve never even heard of it and I never even knew research was going on into in that area.

I didn’t even know a drug had been this sort of drug had been developed. And when she explained it I was just like amazed because I was like that would if that was to become available it would help so many people and she’s taken part in this clinical trial and, you know, I didn’t even know that was going on and I didn’t even know that was a possibility that could occur in the future.

So a good source of information explaining what trials are going on or what trials are going to be going on in the future and what sort of participants they are looking forlike age range, and what criteriayou need to meet. And then what trials have taken place recently and what are the recent findings and what’s the possibility for future research or future treatments being developed from that trial.

So a whole wealth of information just seems to be like sort of missing and it would be really good to have access to all that. And even not just like as l said within the country, not just within the UK, but even like internationally coz there’s obviously many clinical trials going on in America and Australia and Canada and all these different countries and within other countries in Europe that are going to be investigating different things, and it would be so useful to know like coz we are the people in with these conditions and we want to know what’s in the pipeline and what could be coming on and so it really would be useful to have something like that. Interesting for patients and also for clinical you know for doctors and for or for parents as well.

But I am really interested to know, you know, what clinical trials are going on at the moment or even in the future if I could possibly participate and what would be benefits of that be. And obviously there are things you have to consider like travel and expenses and if you have to have time off work. There are a lot of things you do have to consider but at least having the option to take part would be, would be useful.

Definitely, coz if it just comes from like the hospital or something they might not be as keen to take part. But if like a representative from the charity can talk to them about it, or someone else with the same condition that may have been through some sort of clinical trial, they could, they could have like a case study on the web site and doctors or researchers that are taking the clinical trials could use the charity to help recruit them. They could you know almost use it like show the benefits of taking part in the study. And that way you’re getting the information from, you know, charities seen for people with a condition; it’s like a good source of support and you know you trust them. So it, I think it would encourage people to want to take part, especially like younger people that maybe have never taken part in research before. If they can see people with the same condition that have taken part in other studies and how it’s going to help people in the future then it would encourage them to want to take part.

Well I think one of the things we also mentioned on the telephone conference that we had a few weeks ago was you could sign up to the website to say you’re happy to be contacted, to be taken, to take part in research. So that if a researcher, such as yourself for example, you wanted to interview people about clinical trials, you could go on the website and you could see a list of all patients. This for example would be patients with cystic fibrosis that are happy to take part in research, or, happy to be interviewed. So you would be able just get their email address from that website and then email them directly rather than having to go through different sources. And the same like, if my email address was on that website and obviously you would have to make sure that it was like protected, like you had to have like a sign in and everything, but if my email address was on that website that would be saying I’m happy for researchers or doctors or anyone conducting a clinical trial to contact me if they’d think I’d be appropriate. Maybe I could have like a little profile saying who I am and what my condition is and I’m happy to take part in any research that would benefit people with cystic fibrosis. And then I can be contacted that way. So people coming to us directly rather than having to go through lots of different fields.

And obviously with this sort of thing there’s lots of ethics and just having you on a website it would have to be an official.

I think even if you can, when trying to recruit someone explain, well first of all what, really if you can try and excite them about the aim of what the trial is then if you can engage their interest then that’s half of the battle won, you know. So that this trial that I wasn’t eligible for sounded really cool because it was just measuring glucose levels of your breath and the eventual aim was to try and make it so that they could just have like a breathalyser that measured your glucose and would predict whether you were about to have, you know, whether you were about to get ill or have an infection and to try and catch the infections earlier and so, you know. The idea that you’re contributing towards a cool breathalyser thing that sounded really exciting. So I think that yes if you can try and excite them about what the aim of the trail is then that will encourage more people to do it and, you know, because then they’ll think oh, you know, One day I’ll be able to tell people oh I helped, you know, I was part of the trial that did tha. Because that’s what with the gene therapy thing if it all works and get to say Yes I was on the trial that pioneered gene therapy for Cystic Fibrosi and that will be….

Cool.

Yes [laughter].

Yes, well actually on the subject of a website, it might be nice to have one anyway to talk to fellow people and say Oh I did this trial did you do that one Because it’s, it is interesting to talk about it with other people and in particular if they have been through the same experiments that you have then you can talk about them together. But again I don’t know how sort of allowed that is from the point of view of the trial.

I think the only thing I would say is actually going back to what I literally just said about the maybe having a site to talk to other people who have taken part in clinical trials. Because obviously, you know, I can talk to my mum, my brother, my friends but I’m the only one that’s actually done the trial and been part of it and, you know, in that sense it’s sort of lonely in that no one else has been through it and really knows what I did or understands what it’s like going through yes. So it might be nice to be in touch with other people to share experiences.

I think that’s a good idea actually because it can be very isolating.

Yes and as I said though even though I talk to, you know, lot’s of my friends who studied science at University, they all get very interested in what I’ve done and the science behind it. But I’m the one that lived through it as it were, so yes it might be nice to yes and I mean that’s even on a more general point of just having Cystic Fibrosis, you know, I’ve got lots of people that care about me and that understand and I can talk to but that’s different from having someone else properly in the same boat as you that you can have, share that thing with.

Do you think like it, would it be nice, do you think, like you mentioned not knowing anybody, to sort of know other children?

Yes, it would be nice to know other children and be able to talk to them how they feel. And it would just be nice to like, even if there’s someone new going on it, just to talk to them and tell, like when I was a bit scared going on it, tell them that it’s all right and that.

Do you think that
would be nice to meet other people?

Yes definitely. Because Ive never met anybody else who has
arthritis and I kept, at my age obviously like you know, like old people that
have it but I’ve never met anybody that’s going through the same thing that I
have but I know that people are.

Right so yes, so
you’d like to meet others who are perhaps having the same treatment?

Yes, yes and like what they feel about it type of thing and like,
you know like people can help each other because they know, because like
obviously like your mum and dad they’re always trying to help but obviously
they don’t know what it’s like. So I think if like I knew somebody else that
was finding things difficult and like I could help them and they could help me
type of thing.

Do you know many other participants?

No. I, I’ve met two by passing. One who sat next to me once, because I had to get, had to a day ward with serious amounts of effort, and I spoke to him for a couple of minutes. But he was just off as I was coming in. So that was definitely a bit weird. And then I met a 4, well, a 2-year-old girl even. She’s 4 now. But she was just coming on a trial, like my fourth visit. So she was in pretty much the same state as I was in, but she was a lot younger, so she had definitely a lot longer to kind of get used to the fact of this is happening, that’s happening and that’s happening.

Would you like to have met anybody your own age?

Sometimes, sometimes not. Because, fair enough, I’m, I’m quite like a person who likes to keep their stuff, themselves to themselves. But I wouldn’t mind seeing other people’s opinions. And, is it helping them? Is it help, is it making them worse? Is it doing them, what, have they changed?

Do you think there’s a way of, that they could do to improve it for you?

I think it could have, sort of looking at it overall it could have been improved by just sort of that extra information being there and those updates. Sort of to know that sort of they’re not just taking that information from you and that’s it. Sort of to find out how they’re, what they’re doing with that information, how it’s been used so far and what they’re planning to do with it, and sort of how the project and the sort of, everything overall is doing.

And is there anything you, else you’d like to add to what we’ve said at all about your whole experience?

I think, no, not really. I think it’s just remembering, sort of the researchers need to remember that sort of we want our sort of results to be valued and they’ve got to sort of show us that they are valued in some way.

And is that by like keeping in touch? Or a reward?

I think sort of a selection really. Sort of keeping in touch so we know that sort of it’s still going ahead and everything. I think a, sort of on a sort of study this size obviously a reward would be, you can understand it being quite a small one. But something at least, so you know that they did sort of want them, those results and things.

Is there a better
way then to sort of inform you about clinical trials do you think?

Well I think they could give me a bit more information about the
clinical trial.

You think so?

Yes.

You’d like a bit more, something a bit easier to
read?

Yes, and like more information because they only gave me a little
bit of information, so I would quite like more so like, I didn’t quite really
understand it.

What sort of
information would you like, can you explain that?

Like well the information they asked me is like are you okay doing
this and that like I’d like to have more information about like well we’re
going, these are what you should do and these are what you shouldn’t do. Should
I need that.

Right. So with
your arthritis you’d like to know more about what you can do?

Yes because I’ve got it everywhere in my joints in my body, well
they only sometimes like check me, they check my like ankles and my wrists and
stuff they check. But it’s just I’d like them to inform me that I’ve got
something in my wrists because they just say well you’ve got, like they don’t
tell me why I’ve got it. And I know I’ve got it because of me arthritis but I
mean why it’s happened.

Okay so you want
to know more about why you’ve got it?

Yes, and what happened like when I’ve moved or something, it’s
went and I’d like to know that.

Why did you agree
to take part do you think?

Because I thought it would be kind of like good to explain, you
know arthritis, what it’s like and that, then they’d understand like what
arthritis is like if I told them properly.

So do you think
it’s important they understand what it’s like for you?

Yes. Well I don’t think it’s like important but I think that it’s
quite, they should know what it’s like to have arthritis.

Because you said
sometimes you want to ask how I got this and this is why it’s happened, do you
think there should be more questions?

Yes because they don’t say like when you write stories or draw,
because most children I know who have got arthritis when they’ve wrote their
wrist starts to ache but they, I always sometimes, I can’t sometimes tell them
that it hurts when I sit down for two long in my thighs and my wrists when I
write for too long.

That’s good, and
if you were to give a message to other, to health professionals about your taking
part in a clinical trial what would you say to them, you
know, based on your experience now, what do they need to know that you think
people should be aware of?

Well I think they should know that, because they don’t understand
how like sometimes painful it is to have arthritis or I think you could like
explain to them what it really is like and how painful it is and then they
could probably go off and tell children that I spoke to some people and they
said how painful it was, is yours painful?