I normally ask them that. I’ve grown quite a bit and I’ve put on weight, but I’ve lost inches around my waist. So I’m not sure how this is working out. But apparently I have.

You’re going to change shape?

Yes, I’m just going to turn into a different me. But I’m not, I don’t worry about weight. That’s not a big problem for me. I just, it’s not a concern. But I really like to grow. So when they tell me I’ve grown I feel quite happy. I don’t care about anything else. So I like the idea of growing.

So they do tell you that you’ve grown?

Yes, yes, they get, they do tell you. Sometimes you have to ask, especially the nurses who aren’t with the trial. You have to, because sometimes they can be moody, so you’re just like, So what’s the height? And then they’re like, Oh, well and you’re like, I’ll just look at my sheet, shall I?

So they’re a bit moody sometimes —

Yes.

— when they’re busy?

But they’re, they’re nice though. They’re nice.

I’m just wondering how they work that out from what’s normal growth and then what’s part of the trial.

They, yes, I don’t know how that, that work actually. Because the nurse takes all my things that they need for normal check-up. And I have to have my blood pressure taken again and I have to have like my waist measured as well. But I don’t know about the growth actually. But that doesn’t, that does, that does confuse me, because we’re kind of like a growing generation. So I am going to bring that up. I’ll bring that up next time.

And in terms of, have they said anything about when
the trial ends what will happen?

I think they’ll look at everybody’s results and
they’ll give me like my results and a summary of what the trial, and they’ll go
into more, further research into, from what they’ve got from everybody’s kind
of results and that’ll go on from there sort of thing. So it’ll be an ongoing
thing for a, maybe another year or something. But I’m hoping I can go back to
Levemir, because it was nicer. But mum says, I think you’ll be stuck with
Lantus So I’m not looking forward to it, to be honest. But I think in, if I
get used to it hopefully my background insulin will go down. It does in hot
countries. I can take 20 and it’s like, Yes So I’m looking forward to moving
to a hot country. If I do, if I do have to stick with Lantus I’m moving to
Turkey for the rest of my life.

And would you take part in another, another trial?

I would actually. I know, because one of the reasons
is because I’ve always been brought up with doing these trials. I’ve done
diff-, loads and loads because of my mum. And my mum would no doubt pick up
another trial leaflets halfway through and just go, Hey, Lauren, would you
like to try this And I’d be like, Yes, let’s try it Just because I like
the idea of trying things and, because it’s always about trial, trial and
error. And it’s just, What do you prefer and, Would it make my lifestyle
easier if I done this Because I used to have a lot of trouble. When I first
got it I used to, I used to love doing my injections. Which is really weird.
And I was like, Oh, I’ve done my injection, yes But then I went, going,
Actually I don’t like doing the injection and I used to skip doing
injections. I’m very good now. I do my injections. But when I did skip them, it
was just like, I don’t want this anymore. I want it to go away Just, and
then just like, but I do like the idea of doing trials. They always excite me.

I mean is, is it that, what is it that excites you? Is
it the fact that just there’s something possibly new?

Yes, the idea of like doing something new and the fact
that you’re like just trying something. And it’s just like, like, Guys, I’m
on, I’m on this trial And they’re all really interested, my friends. I’m
like, Hey guys, I’m doing this like trial thin and they’re like, Oh, cool.
Tell us more And it’s just like, Oh, I can tell them about thi and I feel
really like quite special. I don’t know why, weird child I am.

I think that’s good, because I think one or two young
people have said it’s nice because you feel a bit special.

Yes, you kind of feel like, the reason, because you’ve
got this like horrible thing, you’re actually doing something good for, you,
you’re doing something good for it. And it’s kind of, you kind of think better
about it than what you did. Because I used to, I used to, I hate it But
because of doing the trials I’ve, I’ve learnt to accept it so much better than
I think I would have done if I didn’t do the trials. And it’s kind of put,
Well, I can now help others if I want to or if I ca kind of thing.

Was there, is there any point when you perhaps would
stop or not take part in a trial?

If I wanted to stop, my reasons would have to be I
didn’t trust the people who I, like I was with, I didn’t like how I was being
told to do things or being treated, and, and I didn’t feel comfortable doing
the trial. All those things, I would not do the trial. Because I feel like I
need to trust them, I need to know what I’m doing, and if I didn’t feel
comfortable doing it I just couldn’t do it, I just wouldn’t be able to do it.

So you kind of made the decision. Did you make it quite quickly?

I had, I thought about it, but I thought about it for a couple of days and then I decided that I wanted to do it. And I wanted to do this trial because it was the first trial that I’d ever done including, for diabetes. And to me, I felt like because I didn’t have a good time to begin with doing it, I wanted to help other people. And if this was one way that I could help them in the future, I wanted to do that.

Do you think that was your key motivation for taking part?

Yes.

Helping others? Was there some personal benefit as well, do you think?

I wouldn’t, I don’t know at the moment. I’m halfway through the trial, but the only thing it seems to be doing is hurting more. So not really.

But at the time when you were making the decision, did you think, It might help m?

Yes, yes, I thought that would help me. And I also thought that if I did the trial I might feel better about myself and better about having this illness, kind of disease kind of thing. I don’t like it.

Did they say what the side effects were?

No. That’s what they were trying, they, they didn’t
say that there’d be like massive side effects, there were side effects. They
were thinking that there could be, there’s possible weight gain and there was a
couple of others, but I can’t remember what they were. But they said they just
wanted to see whether we put on weight or whether we didn’t or if we lose, lost
it because of this background insulin. But they said they didn’t think any
others; there was any other side effects except weight gain and I think
something else. But I can’t remember at all what that was.

And have you had any side effects, do you know?

I’ve put on weight. But that’s about it, yes.

And do you have to tell them that? Do they weigh you
at all?

They weigh me, do my blood pressure, measure me, take
my height. And that’s about it really.

And is that every time you go?

Yes, every
For the three-monthly?

Yes. But I never have to do it when I go up the hospital
because they normally send the results that have already been taken. So it’s
not bad.

And you said there was more pain I think

Yes, my, the insulin that I’m taking, Lantus, I find
is a lot more painful. And it’s also because I’ve got a small needle. I use a 4
millimetre needle instead of a 5 millimetre needle because I don’t like them.
They hurt so much. But a 4 millimetre is nicer. But with the Lantus it stings
so much more. And it’s just like, Waiting for the pain to go now

So that’s when you’re actually giving yourself the
injection?

Yes.

it’s more painful?

And then afterwards it stings a bit and it’s just
likeAnd then you kind of question whether you really want to carry on. Then
you’re like, No. I will do it. I am fine with it And then you tell them and
they’re, and they’re like, they say, Well, do you want to drop out? Because
you can. You’re more than welcome to drop out if you want, if you don’t want to
do it anymore and we’ll put you back on But I’m all right with it after I’ve
done it. it’s getting to the stage of doing it. But now it’s been down to 26,
although it’s only four units lower than 30, it’s so much nicer. But, not much
nicer, but it feels nicer.

Do you think it’s
important they offer you that option to withdraw?

Yes, yes. Although to
me, if I withdraw something, I know I haven’t given it my full, and that if I
did withdraw, I knew that I weren’t fully committed in the first place. So when
I think things through, and even though they give me that option, I prefer to
think things through and make sure that if I do it, I will go to the end and do
it. I don’t want to do it halfway and give up. So I’m doing it all the way.

it’s good, and they’re good reasons as well, you know,
what you say. But I think a lot of young people need to know that you can opt
out. it’s just a
Yes.

eassurance, isn’t it? Really that you don’t have to
do it.

Yes, I like that.

Did they offer you,
you know, when they say you can opt out, did they offer you, say, Well, if you
did come out, we’d still treat yo?

No, I think it was
more of a case of if I opt out then they’ll destroy my files and everything
that I’ve put in, and I think they’d send us a few things about the trial later
on. But that was about it, I think. I would have been totally pulled out of that
trial. And they said that if, in future if they had any more they would contact
me, but then they, but my, all my files and that would be destroyed and
everything. But I think that was about it really.

The purpose of the trial is to see whether an illness,
or the background insulin that you take when you’re on the carbohydrate regime
is, makes you put on weight, has any side effects, if you lose weight or if it
can, if it affects your, some part of your body. it’s just kind of that.

And just going back to that, because you mentioned
also about not being tested, do you know whether it has been tested in young
people before, this particular

I’ve no idea.

No?

I know that beforehand mum was on like pig’s insulin.
That was what they used before. And Novorapid and all the other insulin’s at
the moment. But I don’t have a clue about any of that.

And what’s background insulin?

Background insulin is, when you’re on a carbohydrate
regime, you take injections for the carbohydrates and the sugars you eat. And
then because you don’t eat at night or during the night, you need a bit of
insulin just to keep you, your sugar levels flat. Because you’ve obviously got
the high, you’ve got your, say you have breakfast here, well, your sugars are
going to shoot up, but then you take your injection and they’re going to go
down again. But in the night they, they fluctuate and then the background
insulin is just to keep them steady. And sometimes people have to take them in
the night and some people just have to take them either in the morning or, but
at night as well. Depending on what your sugars are like in the morning and
what your sugars are like in the evening.

I used to be on Levemir, which is one type of
background insulin, and Lantus is another. And in the trial you were to, you
were randomised, and whatever category you were put in you either had to trial
Lantus or Levemir. And you’d see how they affected your body or how you looked,
or your diabetes and how they affected you. So everyone was put in to a
computer and you were randomised, so they never set you out into certain
groups.

And how did you feel about being randomised in to a
group?

Well, I thought it was quite cool actually. I quite
liked the idea because I have my own imagination, so I had this idea that all
these names would appear on the screen and they’d all go in to like a big fuzzy
thing and choose groups. But obviously that doesn’t happen. But I found that
quite fun.

Do you know how they do randomise you?

No, I don’t.

it’s usually a computer.

Yes, I know it’s computerised because they told me.
But I just had this lovely idea, so Iquite enjoyed it.

So you just got an idea in
Yes.

our head and stuck with that? And what do, what if
you were to explain to a young person what randomisation means, how would you
describe it or explain it?

I would just describe it as kind of like pulling your
name out of a hat and putting you randomly in to another hat or two hats. So
say if everyone’s name was in a hat, and then you’d have two hats. And then
you’d pick some, like five names out, but you didn’t know the names and you
randomly put them in these two hats. And then you’d open the names at the end
and whoever was in that hat would be for this and whoever was in the other hat
would be for that. That’s my theory anyway.

That’s fine. And di

So you kind of made the decision. Did you make it quite quickly?

I had, I thought about it, but I thought about it for a couple of days and then I decided that I wanted to do it. And I wanted to do this trial because it was the first trial that I’d ever done including, for diabetes. And to me, I felt like because I didn’t have a good time to begin with doing it, I wanted to help other people. And if this was one way that I could help them in the future, I wanted to do that.

Do you think that was your key motivation for taking part?

Yes.

Helping others? Was there some personal benefit as well, do you think?

I wouldn’t, I don’t know at the moment. I’m halfway through the trial, but the only thing it seems to be doing is hurting more. So not really.

But at the time when you were making the decision, did you think, It might help m?

Yes, yes, I thought that would help me. And I also thought that if I did the trial I might feel better about myself and better about having this illness, kind of disease kind of thing. I didn’t like it.

And did, you know, those things were going through your mind and you made your mind up. But did you ask questions at the time, after reading, and before making that decision?

I didn’t actually. I just thought, I want to do it. I’m just going to do it blindfolded So I went in. Plus I couldn’t actually think of any questions. So it was just a, more of a case of, Yes. Give me the information. If I have any questions, I’ll ask But I didn’t, I didn’t really because they more or less covered everything. And I just thought, Do you know? I really want to do this. And I’ll do it no matter wha to be honest. When I get stuck in to something, I’ll do it.

You just, but did you like having that time to make that decision?

Yes, I did like not being rushed. And then obviously all the way through they’ve always said, If you want to take, like go out of the trial, you can But I like the idea of staying in it for the; for the year, just to see what happens at the end really.