I think mum was part of, mum had seen it I think she was on the website, I don’t know the details really, but it’s two women who are running it, and I can remember the name of one.

But, so they invited us down for the day so that was how it was done I think, it was all arranged appointment wise yes.

And did your m have all the information, did you see any information on it or did your mum have all that?

I think she had most of the information but I think the information was literally just telling us you’ll be taken for a few tests, it was when we got there that they explained everything to us so I sort of got it from there.

So you didn’t actually, you didn’t see it yourself?

No.

So your m kind of investigated most of that; how did you feel about that?

I was really up for it, I was really because I thought, what she had told us about it like oh you’ll be taken for tests at [hospital name] it was really kind of Oh really, oka because it was something new and none of my friends had done anything and I was like Oh ye.

Yes. So you didn’t mind that?

No not at all because, also we knew it was for ADHD and things like that so it was sort of like really interesting to be part of that [because] I want to be a teacher so I, even from a very young age, so I sort of thought Yes that would be quite good for me because they might tell me a bit about it and then if they find out how you manage it in classrooms that would be really goo so.

Oh that was good.

So that was my thought process.

So do you think that’s, apart from your mum volunteering you would you be happy for that, those where the motivations in taking part?

Yes, yes and sort of really just taking part.

You were thinking already about your future career?

Yes, yes because I thought I’d like to be a part of something that might find a way to help ADHD sufferers or something like that.

So I remember when we first went there were all these different tests, one of the tests we had to do was picking up things on a computer screen, you know like clicking when certain things appear and when, clicking when they don’t and if you have, you know, for concentration and things and you got rewarded at the end of each test, so like you got stickers or something like that and we were a little bit younger then so it was like Oh a sticke. But so that was that one and then there was another test our bone density was scanned so we had to lie on a scanner and like take everything metal off, just sort of kept remembering things that you had that were metal, Oh my necklace, my necklac but they were fine we just had to take it off. And they scanned us, we got a picture of our skeleton and it told us all things like density of our bones, the percentage of fat we had in our bodies. Christopher had less than me, damn. So there was things like that. And then there was another one where we had to go into, I didn’t really understand this one but we had to go into a sort of cubicle thing, it was quite weird, but we just had to sit still and what it did it was sucked, I think it sucked out the vole of air or something, obviously oxygen was inside but we couldn’t move and we had to sort of hold our breath and things like that and, I don’t know what that was measuring, I can’t really remember but that was really weird and I really can’t remember what they were doing with it but it was like you’d got this little window so but so there was that one as well. We had to be in our swimming costume because even clothes would alter the readings so that was that and of course we’ve been called back to be in a new one to do so, with our brains or something so.

So that’s going to come up?

Yes.

Soon?

it’s going to come up soon. From the letter they’re going to put the electrodes on our heads, so like we have to wash our hair the morning before and we can’t use gel or shampoo, well shampoo but we can’t use like, you know, heat protection and things like that because it will alter the readings again so we’ll have to see how that goes.

Yes I just remembered another one actually, they took an ultrasound of our wrists I think it was, and so it was like the gel and things and I always considered ultrasound oh pregnant women you know sort of like Oh okay that’s ne so, but there was a sense of excitement as well a bit like Oh that looks really weir but I was still looking forward to it. The only thing is me and my brother, we were separated so my dad went with my brother and I was with my m so that was a bit like, it was like a race actually they sort of to do it. It must have been more than two years actually because I wouldn’t have been 16 it must have been more so they sort of made us race against each other to see how quickly they could do the tests so they handled it really well.

Oh right, made it a bit of a competition?

Yes, yes.

Who won?

I think he did.

Yes.

Because I had to keep on removing metal.

And where they all done on the same day?

Yes, I think it took about five hours to do, oh know I think there was five actually because one of the ones, I’ve just remembered when we went home we had to I think it was a saliva sample we had to do or something like that or take our weight. But we had to monitor what we ate for the rest of the day; we had to do something three hours afterwards or something like that. So you had to write down everything you’d eaten like during the day so it was quite, quite intensive in that sort of, because you were like Can we have an ice cream, oh we’ve got to write it dow you know.

Yes, so it was all over, that was all in one day?

All in one day.

And the monitoring of your diet, all in one day?

All in one day.

What happened, did you send it back the following day?

Yes yes I think yes.

So just tell me again what it was like going through each of the tests, you know, how each one felt when you went through and what was the experience like for you?

I, the only one I didn’t actually enjoy that much was the one in like the cubicle thing it was like a bit weird. Because it was so small and I don’t have a fear of enclosed spaces but it was a bit, because then you had to sit still and you couldn’t move and that was, that was difficult because it was like 30 seconds of not moving even blinking they said would affect it, so it was, that was quite hard to sit still and then to see your m laughing at you on the other side and you want to laugh and just like no. But I, I enjoyed most of it, I really enjoyed most of it they would explain it to us and then we’d do it. They did get boring sometimes like the clicking one, it was a bit like okay come on how many more times do I have to do this because you had to do it on different backdrops like colour effects and things but I did enjoy them.

Did it take, did each one take very long or?

They did yes they actually did I think looking back, but it didn’t feel long if you were enjoying it. it’s like the one where they took the skeleton bone density and stuff, that one was alright because the person doing it was quite funny and things and you didn’t really notice but the one where you’re clicking was quite boring because you had to sit in silence, in a room by yourself, you know, it was a bit oh.

What was the bone density one?

I think it was just monitoring they basically took a scan of us with I think very little clothes on because clothes would, even though it was an x-ray but I think what, the whole point of it they took bone density, fat percentage things like that, that if there was a girl or boy who had sort of similar bone density to us, because we were control, it would be used to effect if that person had it or not, it was something like that because we were the control so a similar person to us, have we got the same development because that’s, we had to fill in like, for me like had I started periods yet and things like that and beauty and stuff like that so it was all us as the control, to a similar person, are they going through the same stages or is it all genetic and stuff like that.

Yes, yes it’s going to help people, I’m not going to be a doctor or anything so I can’t really help people first hand but if I can do this then help people out yes so it’s good.

How, is it through your parents that you became aware perhaps of clinical trials?

Yes I do, I do I thought all trials would be for 18 and over’s but they have children as well, bit silly of me to think that but yes I thought you had to be older to take part. But I know any sort of any age if your parents are happy to do it then that’s fine and it’s safe obviously.

And what do you understand, if you had to explain to your friends about a clinical trial, how would you, in your terms, describe that?

I would say trials are to helping out research into certain diseases or whatever’s going on in someone’s life, if that’s the right expression. But yes it’s just its harmless really, it’s just something to do, it’s an experience.

Yes. And what about the understanding of being control, did you understand that?

Yes well we do science in school on control variables and all these dependent variables. And so yes control variables, I’m the one who’s being compared to, so the ADHD (attention deficit and hyperactive disorder) children they’ll be compared to me to see if, a normal child like me will go for this long before the reward whereas they might go quicker or lose interest.

Do you think there will be any barriers for you in taking part, you know?

No, only if long distance, whatever, I wouldn’t really put myself out too much. Most of them are in [area] so it’s easy access but if it’s somewhere far away I wouldn’t be so keen.

I think now that I’m going to Uni, I don’t know if they clashed with anything at school or anything I’d rather do the school. Because I’m in A level in my studies quite important. Whereas like in year nine I’d loved to miss school but yes now studies are getting a bit more hard then I’d have to take school over the studies. Yes things like that.

So the time might be a barrier?

Mmmm yes.

And your other commitments?

Yes and, yes so. But they do give you a range of dates and things like the one that’s coming up that’s in August, so summer holidays and they give you like we can do it from the 15th to the 20th or start in September so yes there’s a wide range of dates.

So if it’s one day, what if it was over a week would you consider it, you know if there was a week?

Yes I’d consider it if it was in the summer and nothing’s going on then yes I’d definitely consider it as well.

But not during school?

No, no try and avoid that.

They were like, you get an appointment to go and see her. And she
just like asks you about like how you are and stuff and then she says like I’ll
send you some questionnaires and you get a packet about that thick. Just full of
questionnaires and they’re just, I think it’s just to try and figure out like
how well people are coping with it and it’s obviously like your young and it’s
just like how you’re coping with it and if they can help you in anyway.

Yes, yes that’s
good. And what sort of, were there lots of questions, I mean what was it, was
it a long questionnaire?

Yes, yes there’s quite a lot of questionnaires like there was some
for me and some for my m and dad.But
they, they generally like repeat the questions but in different like word it
differently. So obviously see like on average like how you are actually coping
and stuff.

Yes, and how
many, about how many questions are there, is there lots?

Like there are lots.

How many pages
like three, four?

About ten.

Ten pages.

Yes.

It is long then.

Yes.

And are they
short or long answers or?

it’s just like tick a box type of thing and but there’s one set
because they’re like little booklets, you know, like an A2 booklet folded in
half. And it’s just like saying, you know, like there’s some that you have to
actually write how you actually feel that you’re doing and like stuff.

So there’s some
that you have to give explanations for?

Yes.

And some are just
yes, no?

Yes. Some are just like tick the box, put like the mark on like
your pain and stuff that over past month or something.

Ah okay. So how
do they measure your pain?

Well it’s just like there’s like a little, a little line and it’s
like zero no pain, a 100 like really painful and you just like mark on where like
you think you are like the past month. And there’s like how well are you coping
with it zero to 100.

Ah okay so
they’ve got measures there and you just put a cross where you are at that time?

Yes.

Yes and I mean
did you find it easy to complete?

Yes it gets me quite upset sometimes so it’s like you’ve got to
think about how you’re coping and stuff and it does like get me quite upset
because obviously like I know but they are easy to do as long as you don’t get
upset.

And what sort of
questions does it, is it because it makes you think about it?

Yes it’s just like saying because there’s one that makes you cry
and it’s like why do you think that you have this and there’s like because you
actually have to like write down what you’re thinking, it always makes me
really upset because obviously like you don’t know. And like some days like
you’ve had like a bad couple of months you just like why have I been given this
type of thing.

So it makes you
question yes why you have the condition.

Yes.

Yes and do you
get a lot of pain with your?

Because I
know that like if, you know, like if they found out that it does help better
then I’ll be helping myself and I’ll be helping other people for better
treatments.

Yes, do you think that’s important?

Yes.

Yes so that would be a key motivation?

Yes.

And do you think that’s what was behind you wanting to take part this
time?

Yes.

Yes helping others. And do you think you have
gained?

Yes.

In what ways?

I don’t know
I just feel good.

You feel good.

I felt like
helping because I know that it, well it might help but it might not but I still
want to try.

Yes that’s poignant thing isn’t it that you’re
trying?

Yes.

So how have the questionnaires changed then over
the years can you remember?

they’re just
like as I’ve got older they’re more about like emotions towards it because
obviously when you’re little you don’t particularly know anything but obviously
when you grow older and you’ve been going for a long time then you kind of
understand it a bit more so they just get more about your emotional side of it.

So what did they ask when you were younger then was
it more?

I think it
was more just like your pain and like do you understand that you have this
which was like yes. And like do you know what treatment you’re on and do you
know what that does but obviously like you don’t actually know but like I do
now.

Was it, does it help filling in the questionnaires,
has it helped you at all to understand?

I think it
does give you a better understanding, not because like obviously it tells you
stuff but especially like the multiple choice it gives you options to pick from
so then you kind of understand what other people think so then you kind of
understand it a bit more.

They give me
like a sheet that, you know, it’s like can I open like a bottle, the lid off a
bottle, can I turn the tap on can I get in bed like stuff like that and you’ve
got to tick like yes, no and then at the end of the sheet it will say how much
pain have you been in this month or how much pain have you been in this week
and you just fill that in.

How do you, how do they measure the pain how, is it
a number you have to?

it’s like a
scale, it’s like one of those grid things and it says zero and 100 and you just
mark which part on the scale.

Do you have to complete anything on your own?

No like my
Nan and my dad and my m takes me but when I’m completing it sometimes I don’t
get it and they like tell me what it means and then I write it in the answer.
And when I get checked on by the doctor just sometimes assistants like doctors
who are like learning about arthritis, and they sit as well.

Ah right. So you do it at the hospital when you’re
there?

Yes.

You go in a room or something?

Yes.

Yes so it’s nice and quiet for you?

Yes.

Yes, does it take long to do?

No it’s about
like ten minutes or something. When they do for the whole thing but the
questions takes about three minutes.

Really.

Yes.

What sort of questions are there?

Like, it’s
kind of questions that like do you, can you, like they say are you stable
brushing your teeth and do you need a wheel chair, can you sit on the toilet
and stuff like stuff that can affect me with my arthritis.

So just making sure about your movement and what
you can do?

Yes.

Yes, so it’s, are they more like tick boxes?

Yes.

Yes, do you have to do any writing; are there any
questions that you have to write for?

No.

So is it easy?

Yes, easy
peasey.

Do you want to tell me a little bit about the third study that you’re doing and how this fits in with your other one and…?

Through my job I was approached by a pharmaceutical company who’s looking, it’s an oxygen company, who are looking into the possibility of making it’s called a physiotherapy vest. So, quite a lot of people do manual physiotherapy or they use equipment as to do their physiotherapy as a way of bringing up their mucus and avoiding infections. Whereas this is a machine which is in, there’s a vest that you put on and air basically pumps into this vest and it vibrates your chest, like physiotherapy would. It aims to bring up the mucus. And they just want to know the feasibility of maybe bringing it into the NHS. How good it would be for different service users. And, you know, it’s quite an expensive piece of equipment. But if it’s only good for the minority then the NHS and the Government’s not going to be that happy about introducing equipment like that or is it going to be available by private companies like pharmaceutical companies. I do know people that have bought them but individual preference. I did like it to begin with but I find it very annoying now. it’s very loud and noisy and big and I don’t particularly like it, but…

So that wasn’t done through sort of your consultant or?

No, I liaised with my consultant and my physiotherapist and they were quite happy for me to trial it. But they don’t offer the vest in their centre just because it’s a very expensive piece of equipment.

And did they mind you doing that while you were on the Heparin?

No they actually said to continue using it because I need to keep everything the same so all the base line measure had kept kind of, the same. They know what’s causing what during the trial so I’ve kept the vest in the trial just so there’s no anomaly, anomalies because I’ve changed my physiotherapy regime.

Did you have kind of very similar sort of information that you had with the clinical trials done through the hospital or because this is done slightly from a more private?

Not as much information. That’s why I consulted my CF Team, the doctor and the physiotherapist. Because I think they go, the pharmaceutical side of things, they go for a more of a commercial way of thinking rather than a medical way of thinking.

That’s interesting to see the difference between the two, I mean, if you could, if there was a clear cut distinction between what would that be do you think going through the hospital and having this private or pharmaceutical led trial?

I well I definitely feel more supported medically if anything went wrong with my Heparin and Mannitol. Whereas if something went wrong with the vest I’d still consult my CF Team but I wouldn’t get medical support from the pharmaceutical company because I don’t think they’ve got that knowledge. they’re more a commercial company than a medical company so, I, not that I couldn’t ask for help from the pharmaceutical company because they are really helpful but they wouldn’t be able to offer medical advice.

So how did that
happen, tell me how they invited you, did they talk to you or give you
information?

They gave me like a leaflet and stuff and they talked to me about
it.

Yes and is that
at one of the routine visits that you have?

Yes.

Yes, so when
they, was it the nurse that invited you?

Yes.

One of the nurses yes. And what did she say to you, I mean how, did she
have to sort of you know, sweet talk you or how did she come, how did she
approach you, or what did she say to you can you remember? Not exactly but
just…

She just asked me to just take part.

Take part yes
and, and did she tell you there and then about what the trial was about?

Yes.

Yes, what, can
you remember what she told you, what it was?

That I have to take a pin prick every month for three months to
see if it works, to see to measure the count of methodrexate.

Okay is that methotrexate?

Yes.

Is that the medication that you have?

Yes.

Yes. And did she give you, so she explained what they wanted to do; did
she tell you why they were doing it? Did she explain the purpose of the trial to you?

Just because the pin prick was easier than taking blood every
month, every month.

Okay so was it
that; is that how you normally have is it, when you’re tested do you normally
have blood taken?

Yes.

So are they
trying to find a better way and a nicer way?

Yes.

Yes, do you like
having blood taken?

No.

No. Do they have
to take a blood sample ever time you go?

Yes.

So the trials
about instead of taking pints of, what looks like pints of blood they just want
to take a pin prick, is that on your finger?

Yes.

Yes, is it more
than one finger or just one?

Just one.

Just one, and is
it just a simple pin prick?

Yes.

That’s it. And
that’s much easier isn’t it?

Yes.

Yes and did they
give you something to read?

Yes, yes.

And tell me how,
you know, was the information easy to read, was it a big booklet or what was it
like that you had?

Just about three pages and a leaflet just telling me about the
thing they had to do.

Why was it, you know, why was that, what made you
say oh yes I’m happy to do that?

Because if
they find out that it works it’s a lot easier just to take a pin prick every
month than taking blood.

Just, I have
to just take blood every time you go. And the pin prick I just have to do it
for three months.

Just for three months?

Yes.

But how many times did you have it taken, how have
you done the pin prick?

Three times I
think.

Three times, so was that a visit every time?

No, I did it
once in the hospital and then I did it at home twice.

I took blood
in the hospital and the pin prick and then the next month I went to the doctors
to take the blood when I did the pin prick at home and the next month as well.

Okay, so over the three months, so it was month’s
later that you did yes?

Yes.

The first time was blood taken then it was a pin
prick of blood?

Yes.

And then another pin prick of blood?

Yes.

And you did the pin prick at home?

Yes.

So how did that work then did you have to put it
on, how did, was it tested if you did it at home?

I had to
squeeze blood off my finger onto a piece of paper and send it.

Ah okay so now I see yes, see how I need you to
tell me? So you did that and they sent did they give you all the sterilised
needles or something to do it with each time?

Yes.

I have to put
it in the fridge or in a cupboard overnight and then you have to send it.

So it had to go all the way over the sea?

Yes.

And do you know why they were doing it? Did they explain in the information what the purpose was?

Yes. Sort of it, there was like a paragraph sort of just explaining that the tests were to develop the knowledge on asthma, sort of covering childhood, and that the research was going to be used for that and sort of only that, and that they’d been tracking us since we were born and they’d hope to continue it when we were adults as well, if we agreed to it.

So there was like an option for you to do, so there was going to be like a third stage?

Yes.

Did they say how old, what age?

They said that sort of our parents do it until we’re 18. It was our choice if we did the tests, but the surveys were sort of organised through our parents. And then when we’re 18 they’ll write to us instead and ask if we want to continue with it. And that’ll continue until old age.

Until old age – Just keep continuing? So your parents agreed to the first part, the filling in the surveys. I know I’ve spoken to your dad about that. Did you also have to sign a form to say you agreed to do the tests at school?

Yes. We had to assent on the initial form. And then when we got to the sort of actual tests we had to sign again, just saying that we’d spoken to the researchers about everything, that they’d answered all our questions. And then sort of they began the tests.

When you had to bring home the information, did your mum and dad also have to say if they – agreed for you to take part as well?

Yes.In the initial letter there was some forms you had to fill in and sign and everything.

And why, you know, you were keen to carry on, why was that?

I think sort of I wanted to carry on because I knew I was helping people. And sort of I know it’s not going to affect me because sort of the research, from what they were saying, might not get used until sort of I’m in my 50s, by the time they’ve collected it all and everything. But I think knowing that somewhere down the line someone’s going to benefit from the research is a nice feeling.

Explain what the tests were and what you had to do?

There was one test where I had to breathe into a monitor and sort of it brought up a graph on the computer sort of showing sort of how quick I was able to exhale. There was another one that measured different gases that I was breathing out and sort of the amounts of them. I did a spit test, of which they took some DNA from that. I did an allergies test. They sort of put pinpricks in my arms and then they put like a liquid on to each spot and it sort of went in. And then they measured if there was an allergy and sort of they measured how big the circle was around the allergy to sort of track it and things.

Did they say what type of allergies they were looking for?

It was sort of basic sort of everyday allergies like grass, dog hairs, that sort of stuff. Sort of they explained as they were putting each drop on which one it was.

And was that all okay? Did you enjoy doing that?

I think it was sort of good because it wasn’t like, you didn’t feel pressured into doing it. It was sort of very relaxed. So sort of it was it wasn’t sort of too stressful or anything. It was sort of, We’re going to do this no and it was all very calm.

And did the researchers come out to do that?

Yes. They visited the school on a day and sort of we all got given, sort of someone came to collect us from each lesson and sort of we just went through it all.

So you did it all in one day?

Yes.

So you didn’t miss too many lessons?

No. It was about sort of 20, 30 minutes to do them all. And then sort of the next person got brought in to do theirs.

So it was quite quick?

Yes. Sort of while they, you might like do half of the test and while they were waiting for the next bit to load up you’d do another one. So you were like always doing something.

The last thing I heard was sort of that day when they did the tests, sort of just saying that I was okay. And that’s the last thing I’ve heard. They’ve said that sort of they’ll be doing the tests, they’ll look at them overall, but it’s not going to be sort of for a while until sort of, because they’re saying those surveys that have been done by parents will be used and compared with the tests. And they’ll look at you overall sort of when we’re adults, sort of so they can look at a whole childhood. And then they will sort of be looked at overall from everyone that’s been involved.

So it’s, because it’s ongoing, so it’s not going to, they’re not going to know anything till the end. So I wonder if you’ll get anything in between that to say, Well, this is where we’re at now

I think it would be nice to sort of know how it’s, sort of how they’re doing with it all. Because sort of it was sort of very much, You’re going to do this no sort of these tests, and I’d not heard anything from them before. And I’ve not heard anything since.