And I think it’s for young people you have to realise that in order for things to develop and for progression to be made, like since, I can’t even describe the difference in like my treatments from when I was diagnosed at the age of eight to now when I’m twenty two. And like one of my friends was round last night and he looked and said Is that your nebulise he said Do you remember when you were like ten years old and it was like this big and you had to have tubes going out of the window and you had to have all this and it took like twenty, thirty minutes if not longer per session and now it’s about that big and it takes two minute and he’s just like, I can’t believe the difference. And all that’s come from clinical trials and from research being done. And you know the different ways, my treatments that I do now are very different from the ones that I had when I was eight years old. And without people taking part in research none of that would have been able to have, you know, have been developed and I would still be stuck doing

The huge nebuliser?

Yeah and the solution which I use now to help me loosen my mucus in the morning that wasn’t available when I was first diagnosed and that’s been developed through research and trials. And now I don’t think I could cope without it. So I don’t, it’s just you know the benefits of taking part although you may think on a personal level it might not benefit you immediately, in the future it will and it’s not just going to benefit you but so many people.

My doctor from when I took part in my research she said for feedback, although we can give you your personal results at your next clinic visit, the final results from everyone will not be available until 2010. So that’s, that’s letting us know before we take part in the study that they are not going to be available until 2010. And it said that we will send out a letter to everyone who took part and write it in [name of bulletin] which is a hospital bulletin. So that’s telling you that the results, although they are all going to be anonymous, they are going to be sent out, and it says here, We plan to publish our research at conferences and in medical journals so that others CF teams can learn from our finding. So that’s telling me that it’s going to be published and that the, that it’s going to send a letter to everyone that took part. However, if I wanted to find out what’s been taken part in other clinical trials and the results of other clinical trials it’s very difficult like, I actually you know I’ve done a degree in psychology and that involved a lot of research. But at the time, I obviously had my own password and I had access to journals, but now I’m not a student any more I don’t have, I don’t have an Athens’ password, a user name and password that would give me access to find results of studies that have recently taken place. So, as a patient you may have taken part in a study, but you can’t actually access the published journal which just seems crazy when you think about it?

Or even know what’s going on or access any results you know.

Medical literature, because the majority, there is obviously lots of websites with information. But I was searching for something a few weeks ago. I was having a problem with my health and I wanted to research it a bit further and when I came to want to research it, all the official published journals about what I was going through I couldn’t access. I could go on websites and read about it but actual scientific research which had taken part into the particular problem that I was having at the time I couldn’t actually access it. Which is just as a patient you want to have access to that and you want to read what’s been going on and the results of studies looking at whatever you might be dealing with at the time. But I couldn’t get access to that.

That’s interesting.

So, that’s there needs to be maybe a patient database where you can access, you know, papers and journals that are relevant to you.

Yeah. I think there may be some available. I haven’t looked recently but, there’s a wealth of information out there, but the actual journals and medical journals are all, you have to have a special password to get to them so you can’t actually read them as a patient.

Maybe, for people, because I suppose I’m quite a visual learner and having and I learn from doing things. But maybe for someone that likes to have things written down there could have been a step-by-step what you have to do. So if you got home and you suddenly forgot like what order do I have to do it in, because there were a few little things to think of, it was quite simple but when you’ve got a lot of other things to think about as well maybe just like the three steps of how you take your, how you take it and how you record it, so written down clearly.

I think that’s quite useful information, important actually, because I was going to mention that you have to be quite organised?

You do.

With all the other things you have to do and other people will have to do the same. And then this you have to be very…?

Yes, so having it, having it written down and just a reminder that how many times a day you have to do it. That would that would have been useful. And I suppose for any research or clinical trial that you are taking part in if you do have to do something at home a few times a day having it written down as a reminder or even getting it emailed to you something like that would be useful.

Well as I say, I recently, only with my first experience very recently have taken part in research and trials and it is something that I’m a would very much like to get more involved with, but I just feel like there’s not enough communication or information out there.

Like for example, if I decided that I would really like to take part in a study I don’t know how I’d go about that and I don’t know how I’d go about becoming involved in clinical research. I recently took part in a telephone conference with a few other people that have cystic fibrosis and we all we all felt the same and we feel that there’s, we feel that there’s a need for a source of information that explains all the clinical trials that are going on in the country for people with cystic fibrosis, and how you can take part in them, and what the researcher is looking for, like what sort of participants and what is the exact criteria. And how you can get involved, and then when you do get involved or what it, what studies are going on at the time and what trials are going on at the time, what are the results of recent trials that have taken place. There was a girl that I was chatting to and she was saying she’d taken part in a study and when she, a clinical trial, and when she explained it to me it is something that I’m really interested in. it’s a treatment that would save me so much time every day when she explained it to me, but I’ve never even heard of it and I never even knew research was going on into in that area.

I didn’t even know a drug had been this sort of drug had been developed. And when she explained it I was just like amazed because I was like that would if that was to become available it would help so many people and she’s taken part in this clinical trial and, you know, I didn’t even know that was going on and I didn’t even know that was a possibility that could occur in the future.

So a good source of information explaining what trials are going on or what trials are going to be going on in the future and what sort of participants they are looking forlike age range, and what criteriayou need to meet. And then what trials have taken place recently and what are the recent findings and what’s the possibility for future research or future treatments being developed from that trial.

So a whole wealth of information just seems to be like sort of missing and it would be really good to have access to all that. And even not just like as l said within the country, not just within the UK, but even like internationally coz there’s obviously many clinical trials going on in America and Australia and Canada and all these different countries and within other countries in Europe that are going to be investigating different things, and it would be so useful to know like coz we are the people in with these conditions and we want to know what’s in the pipeline and what could be coming on and so it really would be useful to have something like that. Interesting for patients and also for clinical you know for doctors and for or for parents as well.

But I am really interested to know, you know, what clinical trials are going on at the moment or even in the future if I could possibly participate and what would be benefits of that be. And obviously there are things you have to consider like travel and expenses and if you have to have time off work. There are a lot of things you do have to consider but at least having the option to take part would be, would be useful.

Definitely, coz if it just comes from like the hospital or something they might not be as keen to take part. But if like a representative from the charity can talk to them about it, or someone else with the same condition that may have been through some sort of clinical trial, they could, they could have like a case study on the web site and doctors or researchers that are taking the clinical trials could use the charity to help recruit them. They could you know almost use it like show the benefits of taking part in the study. And that way you’re getting the information from, you know, charities seen for people with a condition; it’s like a good source of support and you know you trust them. So it, I think it would encourage people to want to take part, especially like younger people that maybe have never taken part in research before. If they can see people with the same condition that have taken part in other studies and how it’s going to help people in the future then it would encourage them to want to take part.

Well I think one of the things we also mentioned on the telephone conference that we had a few weeks ago was you could sign up to the website to say you’re happy to be contacted, to be taken, to take part in research. So that if a researcher, such as yourself for example, you wanted to interview people about clinical trials, you could go on the website and you could see a list of all patients. This for example would be patients with cystic fibrosis that are happy to take part in research, or, happy to be interviewed. So you would be able just get their email address from that website and then email them directly rather than having to go through different sources. And the same like, if my email address was on that website and obviously you would have to make sure that it was like protected, like you had to have like a sign in and everything, but if my email address was on that website that would be saying I’m happy for researchers or doctors or anyone conducting a clinical trial to contact me if they’d think I’d be appropriate. Maybe I could have like a little profile saying who I am and what my condition is and I’m happy to take part in any research that would benefit people with cystic fibrosis. And then I can be contacted that way. So people coming to us directly rather than having to go through lots of different fields.

And obviously with this sort of thing there’s lots of ethics and just having you on a website it would have to be an official.

And it was very interesting because my doctor has sent me an email to say that she’s done my trace. So based on the censor that was continually taking my blood the sugar level and based on the finger pricks they’ve managed to trace, do a trace of my, what my blood sugar level was over the period of four days and she said that it’s normal so that’s good to know. And when I go to my next clinic appointment she will actually show me the trace and talk me through it and then when she’s put all the research together she’s going to obviously do a research paper on it and she’ll do a summary for all the patients that have taken part for us to read and for us to understand.

Yeah, that’s good.

So I think there’s lots of benefits of taking part in this research, and it’s definitely something that I’ll consider doing in the future.

And I think, I believe that the benefits of taking part in this is as I said for me personally hopefully I won’t actually develop CF related diabetes in the near future and hopefully, hopefully never, but I know that there are people, I do have a friend who does have slight issues with her blood sugar levels and this, this research will be really useful to see if it is something that will benefit people with cystic fibrosis and it can help people, you know, it may become used more frequently and it may be a good thing for people that are struggling with their blood sugar levels. So that’s why, that’s why I decided to take part.

And this was first mentioned to me during a clinic appointment with my doctor. And she said we could arrange it at a convenient time for me. And it required for me to go and have the monitor fitted and then any time on day two, three or four I had to have an oral glucose tolerance test which is what I mentioned before. So to make it more convenient for me, I was having an annual review at the hospital, so I decided that would be the best time and I arranged it with my doctor so I went and had the monitor fitted the evening before, so after work I went to hospital and had the monitor fitted. And, this monitor, just was on the lower part of the, of my tummy, and the sensor just rested below the skin. So when I went in to have it fitted my doctor explained everything to me and then she said it had to have like a special, there’s a special device used to fit it. It maybe stung a little bit as the monitor was fitted. And once it was fitted we had to wait for about half an hour for it to settle and then once it was settled the doctor had to make sure that the monitor connected to the to the reader.

Because it had this little sensor and she had to just make sure that it was reading my the blood, the sugar levels just below my skin. And then once, once that was all set up my doctor explained what I would need to do to carry out the study which, which was three main days but I had the monitor attached for four days. So once the monitor was attached, my doctor talked me through what would happen and that basically included taking a blood sugar level from my finger prick four times a day. So she showed me how to do this because this is something I’d never done before. So I, she showed me how to do that and then she showed me how to record it, how to record my blood sugar level. And she made sure that, she actually did it to herself to demonstrate and then I could do it to myself to show that I understood. And then I had a record sheet which I had to fill in. And I had to record everything that I ate over the three/four day period. And what was really important was that I took the blood sugar level at least, the finger prick level, at least three times a day, ideally four times a day because then that matches up to the sensor.

So without the readings of my blood sugar levels from my finger prick it wouldn’t be able to accurately link, link it together with the sensor. So that was really important that I did that. So we made sure I understood how to do that.

And then over the top of the sensor was placed like a plaster or like a, just to secure it on to my skin. My doctor explained to me that it was okay to continue with all normal activities and that I could still have a shower or a bath, you know. She gave me a replacement plaster if I needed to change it over the period, over the few days. And then, and then I went away that evening and it did feel slightly uncomfortable at first and it took a little while to get used to, and even then sometimes, I’d, because it was like having something attached to me. It wasn’t big and cumbersome but I was very much aware that it was there.

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

And because it does affect a number of different organs in the body and it affects everyone in different ways and there is a lot of research going on currently and there has been over the last, you know, in last few decades into improving life expectancy and improving the condition of people who, with CF. Most recently what’s going on is the gene therapy trials which in very simple terms replacing the faulty gene in people with cystic fibrosis and this is something which is really interesting and that I’ve been reading about. it’s not something I’m directly involved with. I haven’t been on the trial but there are people, because this is the first time research and clinical trials like this have ever taken place anywhere in the World. And so it is really interesting.

And I think it’s for young people you have to realise that in order for things to develop and for progression to be made, like since, I can’t even describe the difference in like my treatments from when I was diagnosed at the age of eight to now when I’m twenty two. And like one of my friends was round last night and he looked and said Is that your nebulise he said Do you remember when you were like ten years old and it was like this big and you had to have tubes going out of the window and you had to have all this and it took like twenty, thirty minutes if not longer per session and now it’s about that big and it takes two minute and he’s just like, I can’t believe the difference.

And all that’s come from clinical trials and from research being done. And you know the different ways, my treatments that I do now are very different from the ones that I had when I was eight years old. And without people taking part in research none of that would have been able to have, you know, have been developed and I would still be stuck doing…

The huge nebuliser?

Yeah and the solution which I use now to help me loosen my mucus in the morning that wasn’t available when I was first diagnosed and that’s been developed through research and trials. And now I don’t think I could cope without it. So I don’t, it’s just you know the benefits of taking part although you may think on a personal level it might not benefit you immediately, in the future it will and it’s not just going to benefit you but so many people.

So now that I’m a patient at [Hospital] and all my care is overseen by the specialist team there. One of the doctors asked if I would be interested in taking part in some research about blood sugar levels in people with cystic fibrosis. I’m in a position where hopefully I won’t develop diabetes because of the nature of my condition. I’m actually pancreatic sufficient but there is a chance that if I do become insufficient that I can develop diabetes. But in people with cystic fibrosis that are pancreatic insufficient, which is 90% of patients, the blood sugar levels can fluctuate and can lead to developing diabetes. And they’ve found that when a person’s having problems with the blood sugar levels, like when they’re too high or when they’re too low, it can affect their whole their health in general so it can affect their chest it can affect their lung function and it can affect their weight and it can affect many things. So it’s really important to be able to monitor blood sugar levels carefully and so people are receiving the right treatment. There is a test called the Oral Glucose Tolerance Test which is used commonly to, throughout the World, to diagnose diabetes. But this wasn’t developed with CF patients in mind it was developed in, for general diabetes, whereas CF related diabetes is slightly different. So, they’ve been looking at other ways of how to detect changes in blood sugar levels particularly in people with cystic fibrosis.

And something has been developed to help monitor blood sugar levels more carefully and it’s called a Continual Blood Glucose Monitor System. And the study which I took part in required me to wear this system it’s just like a little monitor for four days. So I was told briefly about it and I was given an information sheet explaining about the study which I read and I could ask any questions that I liked.

Yeah, I say that taking part in research and clinical trials. There is quite a lot to think about and to consider, and for example, I suppose one of the big things is that you could be selected and you could have the placebo. So you may think that you’re taking part, for example, in the gene therapy trials if I had been selected or if I had chosen to take part in those trials, it’s I’m sure it’s a big undertaking and a big decision to make and a big commitment and it may have been for however long the trial lasts, every time you go to the hospital to receive what you think is gene therapy you may actually just be getting, you know, a blank copy of everything because you have to have that in a study. So you might be putting yourself through so much and hopefully thinking you’re going to have the benefit at the end of it but you may actually just be like the control. So that would be something you have got to consider that you know there are going to be people which aren’t actually receiving the drug or the treatment and that’s something you need to be aware of and that should be explained clearly.

But I think the main thing is thinking about, although it may be a time investment for you, or it may be something extra you have to do every day for a few days or a week or even a month, or a couple of months, think of how much it’s going to help people with your condition in the future, and think how much although you’re investing your time and effort into it, it will save whatever you’re doing could potentially like either save lives or save people time or give them you know longer to live in what you’re doing. So in the short term it may feel like a big undertaking but in the long term what you’re doing is yeah and even if you are a control in the study you’re still, they still, they need those people and it you’re still benefiting others in such a good way. I can imagine you may feel quite disappointed if you find out after that you have been used as a control or had that placebo but it’s, you’re still very much an important participant.