Clinical trials & medical research (young people)

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.

 

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.

 

No.

 

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, okay” because it was something new and none of my friends had done anything and I was like “Oh yes”.

 

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 good” so.

 

 

So that was my thought process.

 

Yes, yes and sort of really just taking part.

 

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 sticker”. 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 necklace” 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.

 

Yes.

 

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 new” so, but there was a sense of excitement as well a bit like “Oh that looks really weird” 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.

 

Yes, yes.

 

I think he did.

 

Because I had to keep on removing metal.

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 down” you know.

 

All in one day.

 

All in one day.

 

Yes yes I think yes.

 

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.

 

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.

 

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.

 

 

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.

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 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.

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.

 

Mmmm yes.

 

 

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 15^th to the 20^th or start in September so yes there’s a wide range of dates.

 

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.

 

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 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.

 

Like there are lots.

 

About ten.

 

Yes.

 

Yes.

 

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.

 

Yes.

 

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

 

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.

 

Yes.

 

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.

 

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.

 

Yes.

 

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.

 

Yes.

 

Yes.

 

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

Yes.

 

I don’t know I just 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.

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.

 

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.

 

 

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.

 

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.

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...

 

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.

 

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.

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.

 

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.

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

 

Yes.

 

Yes.

 

 

She just asked me to just take part.

 

Yes.

 

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.

 

Yes.

 

Yes.

 

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

 

Yes.

 

Yes.

 

 

No.

 

Yes.

 

Yes.

 

Just one.

 

Yes.

 

Yes.

 

Yes, yes.

 

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

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.

 

Yes.

 

Three times I think.

 

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.

 

Yes.

 

Yes.

 

Yes.

 

Yes.

 

 

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

 

Yes.

 

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

 

Yes.

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.

 

Yes.

 

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.

 

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.

 

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

 

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.

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.

 

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.

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 now” and it was all very calm.

 

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.

 

Yes.

 

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.

 

 

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.