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 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. 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.

And did you have any
questions then, once you’d been home and, did you have, you know, then have, go
back and ask them any things?

No, because I was
still a bit shy because I didn’t really know anyone. And it was just all quite
new to me and that.

Was it a different
hospital than one you normally, the one you normally go to?

No, but it’s a
different place in the hospital. [Mum’
And a different nurse.]

Did that worry you at
all?

Yes. Just talking to
people I didn’t really know. And it was just a bit weird that they knew a lot
about me, and I didn’t know anything about them.

Do you think, do you
think you’d like to have known a bit more about them?

Yes.

Yes, I think I would too, yes, especially when they
know so much about you.

Yes.

What sort of things do you think, if, if that was
another young person, what do you think they can do to improve that and make
it, like giving the young person information about who the doctors are?

Yes. Because I didn’t
even know any of their names.

didn’t you?

No.

Did they introduce
themselves to you when –

Yes, it, like it, the
second time I went they introduced themselves, but not the first time. So I was
a bit shy.

I had to have a joint count on it, no, a joint count
and then a blood test. And then we had to wait till the drug was made. Because
we had to get, we had to get told to, that we, I was allowed it by the drug
company that provided it. And then they made the drug, which took an hour. And
then I sat in a chair and then I got a needle in my arm.

And that’s what, was that the drip?

Yes, drip.

And how long, was that like a day appointment?

Yes.

Just for one day? And how long were you having the
drip for?

An hour, and then I think there was a 20-minute flush
at the end.

What does that mean?

A flush. Where they just put water in it, so the rest
of the drug goes through. Because sometimes there’d be like a little bit left.
But there’s this ball that stopped it when it got too low. So if they put water
in it, it’ll, the ball will go back up and put the rest of the drug through on
the drip.

So that’s all on the
drip? And that’s, do you have to go in to a little room to have that?

No, it’s like, because
there was quite a few people having it. But not all the people had the same
thing.

So you just had to sit in a chair?

Mum’ You have a nice chair, don’t you?

Yes.

But were there other children your age? You know, were
you able to talk with all them?

Yes.

But they weren’t all having the same thing?

No.

And what happened
after the, when they’d done the drip and they’d flushed it, what happened then?

I had to wait like a
few minutes and then I’d be allowed to go. But they had to take the drip thing
out.

And did you mind do,
going in and having the drip done? You know, was it better than –

Yes, it was better
than having the needle at home. Because sometimes I, I try and walk home dead
slowly and try and put off coming home.

Did you? Because you
didn’t want to have the needles?

No.

And is that because
they were painful?

Yes. And I felt dizzy
and sick.

Did you? Was that from
having the needle? Or was that the drug that made you feel
From having the
needle.

From having the
needle? It really made you quite anxious?

Yes.

You’re not alone in
that. it’s, it’s never nice, having needles, is it? If you’ve got to have them
every day. So you didn’t really like coming home then?

No. And I started
getting angry at my mum because she was the one that was giving me it.

Did it make you feel
better when you, after you’d been angry?

Yes.

So how did it, when,
once you’d had it done, were you okay? Was it just the thought of having it
done?

I was a bit feeling
sick after it.

Were you? And
the, but the drip, although it’s still a

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.

And did you have any questions then, once you’d been home and, did you have, you know, then have, go back and ask them any things?

No, because I was still a bit shy because I didn’t really know anyone. And it was just all quite new to me and that.

Was it a different hospital than one you normally, the one you normally go to?

No, but it’s a different place in the hospital. [Mum’ And a different nurse.]

So you didn’t know all of these nurses and doctors? They were all new
Yes.

o you? Did that worry you at all? Did that, was that a bit scary?

Yes. Just talking to people I didn’t really know. And it was just a bit weird that they knew a lot about me, and I didn’t know anything about them.

Do you think, do you think you’d like to have known a bit more about them?

Yes.

Yes, I think I would too, yes, especially when they know so much about you.

Yes.

What sort of things do you think, if that was another young person, what do you think they can do to improve that and make it, like giving the young person information about who the doctors are?

Yes. Because I didn’t even know any of their names.

didn’t you?

No.

Did they introduce themselves to you when —

Yes, it, like it, the second time I went they introduced themselves, but not the first time. So I was a bit shy.

Ryan’ But when I was getting it they kept having to take blood tests to see
if I was able to get on the drug.

So you had to sort of
meet, they call it, it’s like meeting the criteria, don’t they? So what sort of
things did you have to do to, before you could go on the trial?

Ryan’ I had like quite a few blood tests and I had to, they said like if only
like one or two joints were swollen, I won’t be able to get on it. But I had
like my knees and my feet and my hips and my elbows and that were sore.

Mum’ He had eleven joints that were swollen, and you had to have more than
four.

So you had way more
then, didn’t you really?

Ryan’ Yes.

Mum’ And you had, he had to have had all of his MMR injections and all of his
vaccinations up to date to get on it.

So there were quite a
few things beforehand, weren’t there?

Ryan’ Yes.

And were you pleased
that you could take part, when they said, Yes, you ca?

Ryan’ Yes, because I thought, I think, I was thinking, A drip’s better than
a needle every week Because the needle just made me sick and sometimes I just
didn’t want it.

Mum’ He was also getting very angry at me because I’d learnt to do them so
we could do it at home instead of travelling. And he was getting angry at me
because I was the one having to give him the needle. So he wasn’t coming home
to get it.

And when they said you could take part, were you quite pleased?

Yes, because I didn’t want to have the needles anymore because it was making me angry at my mum a lot and it was making me a bit sad as well.

Was it?

So then when I had it, it just, it, because they told me it would just be for a wee-, few week, weeks, for a few times until the second period of it. But then I’ve been on to a blind stage which is whether I’m not having it or I am having the actual drug. And that’s where I am now. But it’s a bit better, but I know I don’t know it, but

You feel better? So when, that’s interesting, that they explained to you that you, there were different groups and that you would, so did you have the, they say you would have the drug to start with?

Yes, and then I go on to, which, period two, which is like the blind stage, which I don’t know which. But if I got really, if I get really bad then it’ll just go open and they’ll put me on a drug.

What did you under-, when they said that, do you know what they mean by blind?

I didn’t know at the start, but they told me it was like where they, where I was either having it, I might not be actually having the drug but it weren’t anything that would harm me. It was just I think water or something in it.

And did they mention the word randomisation to you?

Yes.

What did they say about that? Can you remember?

In the blind stage that’s what they basically said; randomised between, between like I get or I don’t. So they’re not sure, they’re not sure themselves. Only the drug company knows.

So the doctors don’t know which one? So that, sometimes they call that double blind, where you don’t know and the doctors don’t know.

Yes.

Does that bother you at all being in, you don’t know?

A bit. Because I, I feel like I want to ask questions about it, but there’s no one knows about it.

So what sort of questions do you want to ask?

Like just what, what does the what does it do basically? How does it work? And how do they make it? And am I actually on the drug at this stage or not?

it’s those things you want to know?

Yes.

Do you think, will there be a point when they will tell you?

I think so. I’m not sure.

they’re questions that you should be asking?

Yes.

Do you think you’ll ask when you go again?

I don’t know, because the doctors there don’t know.

It might just help them to explain it again to you and go through it again? The fact that you didn’t know the doctors very well and that and you took part, did that worry you at all, you know, because you didn’t know them?

Yes.

In what way did that?

It just worries me because, I worry, I’m worried if I start getting really ill and then it just started hurting again.

And then, just tell me what happened there.

The next stage, it was, it was every month. And I’m still on that stage. But we’re not sure if it’s, we think it’s the drug but it, we’re not sure.

What makes you think it might be the drug you, that you’re still on?

Because I’m not getting, basically I’m not flaring up. Like my knees aren’t going up or anything. So it&rsq

Did they explain that to you?

Not much.

What do you understand about that?

I didn’t understand it, first. I’m not sure about; I know bits of it but not all of the information about.

What do you know about trials? Would you be able to explain it to, if you had to tell one of your friends at school that you were, what, how would you tell them, say, I’m taking part in a trial and this is what it i?

A trial is just like, it’s not like the other drug I was on, which loads of people have and like most people start off with. it’s like just very few people are having it and the, and it was just, basically it’s a new drug and they weren’t sure if it worked or not. So I was trying, basically trying it out.