It was all in nicely set out. I had boxes of medication and I’d set up regular appointments with the CF research nurse. And she could we just; she’d keep me informed all the time. She’d either give me a phone call every week to see if I was getting on okay with it. And yeah, everything was well set out and is all in, in a diary and all in a diary that we could write down notes and things and we always had regular appointments anyway so she’d.

So what was involved? you know in terms of what they were testing you had to take it, did you have regular appointments, did you have to go in or did you just keep a diary. I mean what was actually involved in doing the trial?

Taking the medication twice a day. Any side effects record it. And then the regular appointments they actually fitted it in when I needed a clinic appointment. So it meant that I didn’t have to go to the hospital all the time I’d be going just as much as I normally would be going but they’d fit in the study appointment, my clinic appointment, everything else so if I needed blood tests they’d do it all at the same time. So it didn’t really put much extra stress on me because it was just a normal clinic appointment but they just tested my lung function every time I went in and they did different sputum samples and things like that. So I think the, with, because you are helping them out with the clinical trial they kind of bent over backwards to make it as easy for you as possible so they fitted in your clinic appointments and your study appointments at the same time which is obviously quite good.

Jenna’ Because like it doesn’t take that much time for me. Because it’s only like a day and then I get home. And like I’ve got the rest of the month, so I just sort of like forget about it. And then I’m like, and then my mum tells me, Oh, you’ve got the hospita and I’m like, Oh And like forget. So it doesn’t really like bother me that much.

Mum’ I think she actually enjoys going.

Jenna’ Yes.

You enjoy going?

Jenna’ Yes, because I get to miss school.

Mum’ And she gets time to, she reads magazines and watches a bit of television while it’s happening and, so it’s actually quite a cushy number.

Oh, right, so you quite look forward to it? Oh, well, that’s good, isn’t it? So they obviously make it pleasant for you – as they can. And do they, when you go in to that room, you sit in your chair, your armchair, do they have things for you to do like that? Is there plenty?

Jenna’ Yes, they have like a cabinet of like movies and like TVs and stuff. I think they have some toys in the waiting room, so you could just like play with them if you wanted.

Are they toys that you’d like to play with?

Jenna’ No.

they’re for younger

Jenna’ I saw a man playing with them once.

Did you?

Jenna’ Yes.

Well, men would wouldn’t they, you know, toys and gadgets, probably had lots of buttons on or something.

Jenna’ No, it was just like little building blocks.

Oh, was it?

Mum’ Boredom.

Yes, boredom. I was going to say, is it boring just in there?

Jenna’ Not really, because like I bring my DS and stuff and magazines.

So how many times
did you have to go for two weeks is it like over six months or?

Lois’
Its till, I got diagnosed in November and I think it’s till the February or
March like what they said you can come monthly now.

Okay so like four
or five months you go fortnightly?

Lois’
Yes.

And then it’s
monthly and how long have you been doing monthly?

Lois’
I think about three months.

Three months yes.
Okay then you’ll, gradually you’ll change and it will be three months?

Lois’
Yes they said they’re going to like start and like I’ll go like to the
specialist then the local specialist and keep flicking, that’s what they’re
trying to do now.

Okay so because
the specialist hospital is that further away than the local?

Lois’
Like the local one’s like ten minutes away and the specialist one’s like half
an hour away.

Oh right. So how
demanding is that of your time.

Lois’
They can be sometimes because like I’ll have to miss school quite a bit because
like the appointments are like, but now we’re starting to get appointments like
4 o’ clock so going like straight after school.

So is that
better?

Lois’
Yes that’s better because that way you don’t get to miss out on like lessons
and stuff.

Do they give you
a choice of appointments where you able to change the time at all?

Mum’
Yes they, at first they didn’t, but when you go to book your next one there is
a choice that they say because the paediatrician or consultant was aware that
we did miss quite a bit of time so he makes it for after school now, he said to
make sure that, you know.

That’s what I was
wondering because fortnightly it’s quite demanding isn’t it?

Mum’ Yes
it was from the parent point of view as well it was quite difficult wasn’t it?

Lois’
Because you have to like go in like twos because the car park quite bad at the
specialist hospital. So one of you has to go in with me while my mum parks the
car.

Yes I mean
parking is a bit horrendous isn’t it? Did that make, was all that, did you mind
all that toing and throwing at the time?

Lois’
No not really because I knew they were like helping me, so I wasn’t really
bothered.

Did you get any
travel expenses do you know?

Lois’
No.

And in terms of expenses and things like that, have
they mentioned, do you get?

Yes, we, well, we used to have refreshments and fuel.
Yes, but now we’ve actually lost kind of refreshments. Because I think too many
people were just kind of going nuts with the idea. Or just they couldn’t afford
it, because if they have ten people and ten people spend twenty quid, that’s
£200 per month including everything else. It doesn’t sound like a lot but if
there’s, however many people are doing it, it’s, that’s –

A lot.

Yes.

But what do you think about being paid to be in the
trial?

I think it can be a bad thing and a good thing at the
same time. It could bring people in for the wrong reasons basically. They’ll
think, Oh, we’ll get some money keeping, keep it going But then it could
stop a lot of people if they can’t, don’t get money.

Because it costs, obviously it costs about £30 to £40
to get there and back from here. So it’s a lot of money. So doing that once a
month, it will build up. But then you could go, argue the point of, How much
is your health actually worth

So how often, can you
tell me like the involvement, how often you have to go to the hospital?

it’s supposed to be a
couple of hours a month. But so far that’s never happened. When, because this
drug, as I said earlier, knocks your immune system down, if you have like a
cold, a chest infection or a sinus infection or anything along those lines, the
doctors don’t, my doctors don’t seem to really like this idea of a drug trial,
because they don’t really know much about it. So I have to go back to the
hospital and they have to look at me and give me antibiotics oro I have to do
that maybe if I’m, if, like winter I’ll be do-, going back there once every two
weeks. But even in the, the hospital day is supposed to take a couple of hours.
I’ve never had it in a couple of hours. It takes about a day. You get there for
about 11 o’clock and you finish like 6, half 6.

So it is a full day?

Yes.

And you can’t get
treated at your local?

No there’s only two
places in this country that I know of where they can treat you [names of
hospitals]. So it’s something you kind of have to work around. If you want to
go studying at university or you want to go out or holidays or anything, you
have to really work your hospital appointments around.

And when you get
poorly in between, you know, do you have to go back there for treatment?

It depends what it is. If it’s just like a
cold, they just tell you to rest and be quite cautious. If it’s like a chest
infection and it’s not, being persistent, they do ask you to come back in and
they have to kind of check you out and make sure you’re doing okay.

Is that because you’re
on the trial?

Yes, because they
don’t want you to die on them or anything.

But in terms of school and that you missed a lot of
school or college?

Yes I had to
leave college because obviously I’m in animal care. So I mean I couldn’t like
by animals or like pups or anything like young animals. And I was like mucking
out and like cleaning the cages; I couldn’t be by like the dirt in cages.

So did you have to stop that course altogether?

Yes, I’d only
been there for like two weeks hadn’t I? And I had to stop.

Right, did you choose something else to do?

I couldn’t, I
couldn’t go back into college.

Not at all?

No.

So what happened there on that side of things?

The Macmillan
nurses went into the college and explained that I won’t be back in because I
couldn’t go back in because of I weren’t out of hospital to really go to
college.

Are there any times
that you missed it?

Oh, yes, there was
quite a few. But I just have to take it another day and then, and it just got
quite complicated at one point. And then remembering the calcium as well and
taking the sachets. Like if I stayed at my friend’s or something or my
boyfriend’s, it, it was quite complicated to do.

Was it?

Yes.

Like you say, when you
go out, because you’ve got a social, your social life.

Yes, it, so, yes.
Because I’ve got to remember all my tablets anyway, but it’s just that extra
thing. And then if you forget to do it, then you can’t do it again in the
morning or something.

And was there a, you
know, did you have to take them at specific times?

No, but I chose to
take it at night because I’d be going to college and I’d be in a rush in the
morning. So I’d take it at the same time as I took my tablets, which is at
night as well.

So that was just a
better time for you?

Yes

And you did that all
the time?

Yes.

Did they say what will happen at the end at all, the
end of the trial?

They might have done. I can’t remember, sorry. I can’t
remember now.

I didn’t know whether you’d stay on something or just
stop and then continue your normal medication?

I think it’s going to stop and I’ll continue my normal
medication, I think. But with the
tablet, it was also, that was quite difficult because you had to sit up or
stand up for half an hour before you could lie down – yes, and go to sleep. So
I’d have to take it like half an hour before I went to bed. And you couldn’t
eat anything an hour before.

So there were some
sort of rules?

Yes.

When you say you had to stand up, was that

You couldn’t lie down
once you took the drug. So you had to sit up like in a chair or on your bed or stand
up. You couldn’t lie down.

Did they say why that
was?

No. They, it had the
instructions on the bottle and they, oh, yes; they gave me a leaflet on how to
take it and everything.

Did you ask why you
did have to stand?

I don’t think I did. I
just think I followed what they said.

What’s your, if you
could tell your experience, what’s it been like?

With the trial?

Yes.

It has been a struggle. And if you forget it, you get so stressed about forgetting it and worried in case it’s affected it in any way. Things like, you know.

You think you might have affected the results of the trial?

If you, yes, if you forget, forget it. And it, you stress over that and then think, Maybe I should leave the trial But then you’re thinking, Well, it’s probably the best thing for yourself and for the other people Because there’s not that many people who can do, be in the trial.

And when you did forget, if you tell them, do you think that’s, would be the key thing? To sort of, if you do forget or something like that, or if you&rs

I think when I first when I first said I’d take part in it I didn’t realise how much there was going to be in like recording and that it was going to be like maybe a little bit, it was probably a little bit more intrusive than what I thought it was going to be. And things like writing down everything you eat, it sounds really simple but like when you’ve got to take tablets every time you eat and you’ve got to spend two hours a day doing your physio and other things, it was one extra thing I had to do. But I just, I just thought well it’s only for three or four days and it’s going to help other people in the future and help my doctor because she’s done an awful lot for me and she’s always so supportive of me and now this is helping her with her research. So those are the reasons why I did it.

And actually for me doing the finger pricks wasn’t really a pleasant experience whereas for some reason I’m not really good at doing the finger pricks and whenever I do it and squeeze it no blood comes out. So one time I think I actually had to do it like five times before. And I think maybe that I wasn’t pressing down hard enough because it’s not natural to be like, you know, injecting yourself or like pricking yourself, and if your hands are cold I found as well. But that’s because some people would be used to it if they’re diabetic and they wanted a range of people in the study, some people that do have CF related diabetes and then some people which are maybe like borderline and are on the risk of developing it and then other people like myself that hopefully won’t develop it, or have got a lesser chance to just, just so they could see the results of the study and so that’s why I was asked to take part in it. But because I’ve never had to take my finger prick test before, it was a little bit of an issue and I think you’re only supposed to need maybe like one or one or two of the injector pens but I think I went through so many because I just had to keep pricking my finger until it actually bled. So there were a few issues like that I did encounter. But I just, yeah I got on with it. And I chose not to do it at work. Because I work in a school and it would have been one extra thing I had to do, at lunchtime there’s not much time anyway. But on the last day I was wanting to post it off before the post went so I did actually take it and do it in the afternoon. So I did do it once but I just went into the medical room. But again that was something else I had to think about because I didn’t want to sit in the staff room or in a class room and doing it, so it was one more thing I had to think about.

I mean was going to ask you about how did it impact on just your everyday life really? Having to do all of these things and taking part in the trial as well as like you say an extra thing?

Yeah.

How did it sort of impact?

Well I didn’t take the record sheet, I, it was recommended that you do have it with you at all times to write down what you eat. But I only get like a half hour lunch break and I’m usually like helping students and different things like that. So I thought well I don’t really want to have to be sat there in the staff room filling in what I’ve had for my lunch so I knew that I’d pretty much be able to remember. But I did make a note of what time it was when I ate something and then I just jotted it down on a piece of scrap paper and then when I got home I wrote it up properly. And again, I waited to do my blood finger prick blood sugar level when I got home. So I spaced it out in a time that suited me rather than thinking I had to do it at like exact meal

So the run in study for the multi dose trial is just one appointment every four to six months I think so that’s just occasionally going in and they do this whole load of tests. And the idea is that they’ve done it over 18 months so they can then plot your progress but that’s just once every four to six months. And in fact on more than one occasion with those I’d managed to coincide them with my regular outpatient visits as well. Because they do a lot of similar tests so it just meant a longer day in the hospital when I got everything done. But the pilot study with the single dose of gene therapy that was quite involved so over the space of a month I think I went in six or seven times. And the bronchoscopy, there were two, two bronchoscopies for which you have a general anaesthetic and I had to take an overnight bag, to be prepared to stay overnight if I needed to. And likewise the day when I actually had the dose of gene therapy I had to be prepared to possibly stay overnight, so those three were all full days in the hospital. Whereas the other visits were, were just for taking results and measurements from you. But, and it was, they weren’t evenly spaced either as well. So for instance, so I had the day of the dosing and then the next appointment was two days later to see what the very short term effect is and then there’s one, you know, three days after that and then they got further and further apart but it meant there was, you know, one week that was very intensive with time in hospital.

It kind of, I don’t think it would have mattered to me
at the time. Because you’re so sick and you don’t really think about anything
like that. You just kind of want to be better and you’re in hospital and, you
know, you, you’re so vulnerable there. You know, money just, things like money
and anything that mattered to you when, when you were healthy just seem so
insignificant. So I think, I don’t know, for some reason I feel like I would
have been quite insulted at the thought that I needed some sort of payment to
be better. Like I wouldn’t want to do that anyway. But, I don’t know, I could
do with the money now.

Do you think payment for young people is important
or not?

No.

Why’s that?

Because this
drug could change your life isn’t that payment enough? This drug could change
everything for the better and surely that is enough, I know like with things
like acne trials and stuff that’s different then yes payment is a good idea
because children will be more reluctant to take part but when it comes to
serious trials like this I don’t think they should be payment in that.

So do you think it depends on maybe the type of
trial?

Type of trial
definitely, definitely.

Like I say there are some that are just…

Yes there are
things like asthma and acne and yes then you could, yes then yes. But with
serious trials like chemotherapy and protocols or any other serious illness I
don’t think payment is needed. Because it is basically saying that this drug
could change your life and make you so much better so surely that is payment
enough.

So it’s going to be of benefit to you?

Hopefully.

Because sometimes these things aren’t always of
benefit to you?

I know.

it’s for those in the future isn’t it?

Yes.

How do you feel about that?

I think you
have to take the next step for the next generation. And you have to be able to
understand and that you could change millions of children’s lives in the future
and whether that is worth taking your risk on your own.

So it’s weighing up whether you want to put
yourself…

Be securing
your life or let thousands of kids for God knows how many years be secure in
theirs.

it’s just that there’s, sometimes there’s a debate about paying young people to take part, whether it’s good to encourage them. But, like you say, it might be for the wrong reasons?

Yes, well, the, you can get paid for the normal drug trials, like the first human trials. I think that’s different again because you’re paying someone to risk their life. But then you could argue it’s like the army or anything along those lines. So you can constantly be in this vicious circle of, Is it right? Is it wrong

Yes, I would take some risks.

What do you mean by some risks?

I would take something like I would if there was a new scan or whatever that might be used in some new technology or stuff, if I, I’d do that fine. I don’t know about taking any sort of new drugs I think I might leave that but sort of new technology that’s fine.

Yes.

it’s fine by me yes.

So you have information and then?

Yes.

And why do you think why do you want to do that, what motivates you to actually want to?

Well all the research and things and you’d have a part in the research and then five years down the line on the news it will come up scientists have made a cure for some certain thing and you think Well I helped in tha. And sort of I’ve done something then with my life instead of just sitting around doing nothing. And also you get, you get your money, they will pay you money which is great for me, I always need money.

Is that an incentive is it?

Yes that’s an incentive but yes I love the fact that you’re just helping out doing the research because I’m not like going to be a doctor or anything so it’s good to help out.

If the money wasn’t there would you still do it?

Mmmm?

If the money wasn’t there…?

Yes I think I’d still do it yes, carry on yes. Because it’s a great, as I say a great experience because you get to do things that only people who are really in a bad situation would be able to do so you get to use these sort of great technical, technological pieces of equipment that have cost millions of pounds or whatever and you’re not ill so. That’s the great bit about it.

Do you think that in terms of trying to encourage younger people to take part in clinical trials and healthy young people as well, do you think that sort of having the payment is a good thing to offer at the start or?

Yes I think payment is of, a lot of young people are looking for payment for things and if it’s free they’re going to be Oh I don’t want to waste my time doing i because, especially if it’s new to them and they don’t know what’s going to happen. Then they might need that extra boost to get them going. But once they see what it’s like and yes it’s an enjoyable experience, it’s not a boring or anything.

Yes, it’s just taking part.

Yes.

Do you think sometimes, because some would say like that the payment is a risk there might be a……

Bigger one.

A not a good incentive? You know, the incentive may be wrong because they may be doing something at risk?

Yes I think you’ve got to have a bit of common sense about what they’re doing on this, it’s like, you know, sort a little ad in the newspaper saying like we’ll pay you £1000 to test our new drug, I think you’ll, woh, stay away from that but sort of, really the money is just sort of just to get you interested with most things and the money makes the world go round these days.

Do you think that’s important do you think to receive a reward for taking part?

I think it’s probably for some people a definite incentive. But I, I didn’t know about it and I was still up for the research so but I think in certain cases like maybe different clinical trials then yes it should be like drug testing but then you sort of think the higher the reward the more riskier the test, you know. Because I know from like my A Level research we, I covered the Northwick Park* drug trials and so the incentive that was over £1000 for those guys to do it, it was a bit, it’s going to be risky if it’s going to be that much.

Yes high payment for high risk.

Yes, risk.

Yes, I’m thinking in terms of, you know, encouraging younger people perhaps to take part or whether that would be, because of like two arguments,Is that the incentive only for high risk or should there just be a minimum payment or a voucher?

I think maybe a surprise reward would be quite or but I personally don’t think it should be any incentive because you either want to do it or you don’t and you shouldn’t want to do it because you want to get something but I don’t know.

Yes that’s a good point.

I know that definitely with some of my friends if there’s nothing in it for them they won’t do it and so that, I don’t know because I suppose my whole thought process was also in the future I might reap the rewards of doing this so maybe as well I sort of Oh yes I’ll get rewarded then you know, but I think also it depends on the age, maybe my age group not so much but definitely like for younger children who you need the parents consent to do it, you know, maybe a reward for that, you know, like an eating out voucher or something like that to get the parents in because then you’re needing your advertising to two groups aren’t you.

*FOOTNOTE:Northwick Park is referring to a Phase 1 trial at a commercial research unit based at Northwick Park Hospital in 2006 when several healthy volunteers became extremely ill. Early phase studies are carried out precisely because we need to find out about possible risks and side effects before giving the treatment more widely.

Have you been had any payment or you’ve had travelling expenses?

Yes the, they’ve all paid travel expenses and so when I had to go down to a hospital for this overnight thing we got travel and then you know you where allowed to spend this much money on dinner and they would reimburse you for that. So, so yes they, because I know with, with other clinical trials where you’re a healthy person volunteering you do it for money but for the Cystic Fibrosis ones as I said I’m doing it to help people like me and hopefully directly myself in some cases so that’s incentive enough for me.

But where there any payments at all, did they offer payment, you know, sometimes they offer payment at the end or something?

No I don’t think I ever had.

Do you think that might be important for young people to have that? Or does it interfere with that kind of… bit of a dilemma?

Well at the moment I, it hasn’t been an issue for me but say now entering the world of work, because it’s not, it’s not only that you’ve got to travel there or you’ve got to stay somewhere. But now it’s, well I would have to, you know, it’s the time commitment which as a student or young person, you’ve got more time you can commit that’s free. But now I think it might make a difference if I did have to miss work to do it whether there was any incentive to do that.

Did they mention about any payment at all? Did you get any payment? They pay you for taking part sometimes?

Every time I did the paper I got a £5 Love2Shop voucher.

Oh, did you? So that was every time?

Every time you did, filled in the paper.

So you had three lots?

Yes.

It was three times you filled in the questionnaire?

Yes.

So you got three payments? Was that sort of a bonus? Was that sort of nice to have?

Yes.

Do you think you should have had, you know, do you think it’s important that you have a sort of reward at the end?

I don’t know. I’m not sure it would make any difference really. But it might, it might make a difference because it might be able to, like if you, if you get the reward, you might feel better about it or you might feel like you want to carry on doing future clinical trials. But I’m not sure really, yeah.

it’s just some people, you know, it’s whether you feel, as a young person you feel it’s something that you ought to have, or it should be mentioned that you’ll get paid, or whether it should come at the end like that as an unexpected reward?I mean does it make a difference to you?

Well, if you know that, either way it’s good. Because if you know that you’re going to get paid a £5 reward when you’ve done the paper, it’s good because like you might know that you’ve, when you’ve filled in the paper you’ll get a reward, so you’ve done something good to fill in the paper. Or if it’s unexpected then it’s also good because like, but it’s also bad because like if it’s, if you get it at the end you might not have tried your hardest because you weren’t sure that you were going to get a reward at the end of it. But if you knew, if you didn’t know that you were going to get a reward at the end of it, then you might like feel proud that you’ve done it because you’ve got a reward for doing it.

Do you think that’s important that young people have a reward at the end?

Well I think they, I don’t think it’s important but I think they should for taking part, so.

Do you think it should be money or a voucher?

A voucher.But maybe just have like £10 voucher, could have like £15 in a voucher for somewhere, WH Smith or something.

Do you think it would have made a difference if you had known there was a payment, whether you took part or not?

Yes.

In what way?

Well if told me, I’d be like woo hoo I’d get a reward for taking part in a clinical trial.

Would it have encouraged you do you think?

A bit, a bit more but probably most yes. Yes. I don’t, I weren’t just taking part if they told me at first about the payment I wouldn’t just take part because of the payment I’d take part because I wanted to tell them about my arthritis.

Have they sort of
mentioned any payment to you at all for taking part?

Yes.

Do you want to
tell me what that was?

£480.

Is it, is that on
completion?

Yes, I’ve got half of it and some of that’s going towards the
summer camp thing, it’s at [name of place] I’m doing the summer camp there.
Where it’s just skateboarding and mountain boarding. Climbing they’ve got a big
climbing wall.

But they’ve said
you’ll get the other half if you complete then?

I think so.

Has that been the
motivation for you, you wanting to take part?

Yes I’m planning to buy a laptop or a new surf board or something.

Okay, so you’re
quite keen to continue?

Yes.

Do you think it’s
important that you know you have that offer of payment?

Yes because like not many people, not, some people would just be
like yes we’ll just do it for a volunteer but yes it’s good.

Was it, when you,
when you went and, did they explain that in the information that there’d be a
payment?

Yes.

Did that, did
that, be honest now, was that like a bit of a motivation?

Yes.

Was it?

A little bit. I did like the idea of doing the medicine and
everything though.