Chris - Interview 07

Age at interview: 57

Brief Outline: Chris has been a healthy volunteer in several biobanking studies over a number of years. She started with the UK Biobank, but has since become a regular healthy participant in diabetes research. She likes to feel she is helping others.

Background: Chris is a finance office manager. She is divorced and has no children. Ethnic background/nationality' White English.

More about me...

Chris was invited to take part in the UK Biobank study, a study which aims to collect samples of blood and urine, measurements such as height, weight and blood pressure, and lifestyle details such as exercise, diet, smoking and alcohol from half a million people nationally. By linking this information with future health records scientists hope to make progress in understanding causes and risk factors for many types of disease. She was pleased to take part, as she likes to do things which she feels may be of help to others in future. She has donated blood for many years.

 

Later, she was invited to take part in another study which needed healthy volunteers to help understand diabetes and develop treatments. She has since been invited back several times by the same research group, and has always agreed to take part. In the most recent study, she got to see pictures of her heart beating taken in a scanner, which she found fascinating. Several of the studies have involved giving blood samples, and she has also had various biopsies, usually from her stomach area. These can be a bit uncomfortable and normally leave a bruise, and on one occasion it was quite painful. The only time she had real problems was when one study involved her drinking ‘heavy water’ before a scan, and it made her feel very dizzy and sick. She would probably not be willing to take part as a healthy volunteer in drug trials, though she might do if she was ill.

 

However, Chris feels it is always her choice and she can say no whenever she wants. The staff have always shown great concern for her, kept her well informed, and made sure she knows she can stop if she wants to at any point. She knows it is difficult for researchers to find enough healthy volunteers and that they are very grateful to her for continuing to take part – although she suspects they think she is a bit odd to keep coming back! She has developed a good friendly relationship with the research team and is impressed that they never seem to talk down to her, even though she does not always understand all the medical details of the research.

 

She finds the different things she has had to do in various studies very interesting, including keeping a food diary, having an MRI scan and a heart scan. It has been good to have things like regular blood pressure and cholesterol tests, and a calculation of her body mass index, so she knows she is pretty healthy. Sometimes things like the food diary or questions about her alcohol intake have made her rethink what she does.

 

Chris did not realise at first that she would be paid for her participation. It is not the reason why she continues to take part, though it helps when she takes unpaid leave to attend. The research group also pays for taxis to get her there early in the morning, and provides lunch when it is an all-day study. But her main motivation is helping find a cure for other people, probably not even within her own life-time. In her will, she has asked that her body be made available for medical science. She feels some of her motivation may come from her experience as a child of having a brother who was born blind, and who had many operations and treatments to try to find a cure. 

 

Chris urges people taking part in biobanking projects to give honest answers on any questions about their health or lifestyle.

If you do a Biobank, I think you need to be honest with your result, with your answers. There’s no point in doing it and then not telling the truth, because it’s a bit like statistics, you know, it’s rubbish in and rubbish out. If you’re going to do it, do it properly, and enter into it properly, so that people understand what really is going on in your family or in your body.

Chris describes the process of donating fat samples in detail. She is a healthy volunteer.

I’ve had two lots, actually, where I’ve had biopsies. The last one... I’ll tell you about, yeah, just the biopsy, but there was a little bit extra that I will tell you, because I’m not sure if it’s linked into it or not – again, because I don’t understand the medical bit of it. But I’ve had two lots of biopsies and the last one was on my stomach, and the good bit of news for me is that they’re looking for fatty bits and I apparently don’t have much fat around my stomach, [laughter] which is really nice for me.

 

But it’s like just a normal injection needle put in, but what they’re doing is they’re putting like a catheter-type thing and they draw off fluid. And the last one in particular, what they had to keep doing to draw it off, they had to wobble it – well, they give you a local anaesthetic first of all. They do give you a local anaesthetic, and again they ask you at every step of the way, “You don’t have to do this. You can stop if you want.” So, you know, you get a local anaesthetic sort of into your tummy, they put the needle in, and they wobble it and it’s just to get presumably the fluid or whatever just to come out, suck it out. I was asked if I wanted to see it. I have to say, because the girl, the nurse that did it is the one that I’ve got quite friendly with, and she said, “This is a really, really--” - oh, and you have to keep very, very still --“this is a really, really good sample. Do you want to see it?” “No, thank you. I don’t. I don’t want to see it. You just do what you have to do with it. No, I don’t want to see it at all.” 

Chris thought the information was a bit 'technical'. She doesn't always want so much information and sometimes it can be off-putting when it doesn't need to be.

Again, the leaflets they send you, sometimes, as I say, a bit technical because I’m a layman, so - and with the best will in the world, I think even if they try to explain it in layman’s terms, I don’t think Joe Public always understands anyway, because you don’t really understand what - you know, telling me about looking for metabolism, the liver function, that was easy to understand, but I’m sure some of the ones I’ve done before I’m not really sure what they were looking for, [laughter] because it’s, it’s not part of my body that I actually understand how it works in the first place, if that makes sense.

 

So, you know, you’ve got all these different organs and what have you, you know. We all know what our liver does and what our heart does, but some of the other bits I think have been a bit technical. But again, they do go out of their way to try and explain, and the only other thing they do go into great detail, sort of to, when you go there, to like - you’ve got it written down what they’re going to do, but then they will go into great detail about saying how many needles they’re going to use and how many samples they’ll take. And sometimes they’ll sort of say, “Well, you know, we need to do this”, and they’ll go into great detail, and I think sometimes I don’t think I really want to know. Because if I think about it, sometimes it’s a bit, “Oh, no.” You might sort of think, “Oh, no, I don’t really want that done.” Whereas as at the end of the day it’s, to the layman it’s just an injection, you know, because whatever they’re taking out of my body it doesn’t really matter - to me it doesn’t seem to matter, maybe - I don’t know if that’s right or wrong.

Sometimes it feels as though we get too much information ' but each individual will feel differently about how much they need.

You don’t need to have all this bumf through the door. You know, you have an appointment now - they send you a letter. You know, I don’t need all this because I know I’m going to do it anyway, but then it’s like every charity, isn’t it? It’s sort of, you know, getting a happy medium.

 

So there’s a bit too much information sometimes?

 

Sometimes. But I think, again, it’s hard to gauge between people. You know, for everyone that says there’s too much there’ll be somebody that says there’s not enough.

Chris finds the check-ups she gets during her frequent research participation comforting and reassuring. She is a healthy volunteer.

You know, and the one thing I find from doing this is, you know, I’ve had my cholesterol tested, everything else I think has been tested in me, and I know that I’m relatively healthy.

 

So being reassured about your own health is….

 

Yes.

 

A sort of a part of it, but not--?

 

Yes it is, it is a part of it, yes, and especially I think as you get older. As you get older you do get more things wrong with you. I think every generation we all think we’re so much healthier than our parents were; I’m not convinced of that really. But I like to think that, you know, I can be, you know, without me having to go to the doctors for an annual check-up, I’ve more than likely done, for the last three years, I’ve more than likely done three studies. I think I’ve done two this year, or no, sorry, last year. But, you know, I know that there’s really, not really very much wrong with me , you know, in the great scheme of things.

 

Mmmm, yes, so kind of comforting to have that extra information.

 

Yes, very comforting.

In one of the studies she took part in, Chris had to keep a diary listing all the food she ate. She found she benefited from this because it made her reflect on her lifestyle and food choices.

But so doing the food, but going back to the food diaries, it’s as interesting for me to write down what I eat as I think it is for the people that are studying it. Because every sweet you eat you write down as well, so like one boiled cough candy, [laughter] and it’s amazing. When I looked through it I thought, “Goodness.” Whilst I eat, [pause] I seem to graze all day, I more than likely don’t eat huge volumes of anything. And again I found that really interesting. It’s a bit of a pain measuring stuff, but again, a bit like when you’re on a diet many years ago, you actually get to know what something weighs, so like, you know, I know just by putting a little spot of milk in my tea that’s less than a teaspoon, you know. So, and it’s measuring those sort of things. It was interesting. And I have been thanked, specifically thanked for doing such a good food diary, which was nice because, you know, it does take a bit of time.

 

Did it surprise you when you looked at it?

 

Yes, yes it did. The main surprise, though, I think was – well, they say, “Don’t change anything you do.” However, I think human nature makes you. I can, at work we have lots of cakes and lots of sweets. It’s always cakes and sweets in offices, isn’t there? And if I have a cake, you know, if there’s cakes there because of a birthday I will have a piece of cake, but if there’s sweets in the office, I mean, you just sit and pick them up as you want them. When I was doing the food diary, I actually was sat there one day and I can remember doing it, thinking, “Oh, I’ll have one of those sweets.” And I thought, “No, don’t”, and I thought I can’t be bothered to write it down, so it almost makes you think, maybe as a training programme for other people who are obese, say to people, “Write down everything you eat”, because it makes you conscious of what you’re doing.

Chris, a healthy volunteer, explains that being paid for participating is not her main motivation for taking part.

There’s a benefit to me, because they pay you money, you know, and in fact I can honestly say the first time I did it, I didn’t realise. I mean, I didn’t realise they pay you. And in fact the one thing I do like, they never, in all the letters they send you any mention of money is always at the end. And whether - maybe it is done deliberately - but it certainly does set your mind that you think, “Well, I’m doing this because I want to, and not because I’m going to get some money out of it”, because I’d hate this to end up like the Americans. [laughter]. I mean, I do blood donoring. I mean, proudly I’ve just done 51 now, so I’ve had a nice little certificate for that, and it, I suppose it goes along the same lines, really.

Chris's twin brother is blind, despite having several experimental operations to try to give him sight. She thinks her willingness to take part in research as a healthy volunteer is linked to this.

What do you feel you get from it?

 

The satisfaction. Well, I like to think, I have a brother, a twin brother - maybe one of the reasons I do it - I have a twin brother who’s blind, and he was born blind, and my mum’s attitude, which I guess follows down through generations, was that he would, she let him have any operation that was going, and we’re talking of fifty years ago, so it’s a long time ago and technology’s moved on enormously since then, but she let him have any operation that was going because there might have been a chance that he could see. And he never did see, he still can’t see now, but I think that attitude of, “Well, let’s try it” has passed on to me. And I like to think that maybe I’m helping future generations overcome some of the problems that we all have. One of things that the studies always do tell me is that what they’re looking for is not to help me in my lifetime, because studies take 30, 40 years, you know, to come to fruition, but it’s for, it will help other people. And I think going back over my life people must have done that for my brother to have those operations. And I suppose I came to think of it in terms of, “I’ll do my little bit to help.”

 

I think that’s the main reason I do it. I just like to think I’m helping somebody. I do blood donoring, since I was in my twenties. I’m frightened, don’t like the sight of blood - I actually hate the sight of blood. And one of the things in the studies, they do many, I’ve had lots and lots of blood tests, and they take lots of blood. It’s not just a little tiny one. They’ve got all these different phials to one side, and you’ve got your arm there, and I have to look away. I can’t look while they’re doing it [laughs]. But they do it, and they take loads. And I think, “Well, as long as I don’t see it.” But actually I think last time I was getting a bit braver, and I’m thinking, “Oh, it’s not that bad,” [laughs]. So yeah, I think the main reason I do it is to, I like to think that maybe somewhere along the lines I’m helping somebody else.

Although she is not sure about it, Chris thinks she might take part in a drug trial if she was ill.

I don’t think I would put my name forward for drug trialling. Having said that, if I was ill then any chance is better than none at all, so I most likely would, actually. So that’s just a bit contradictory. isn’t it?

 

Well, I think they’re two completely different scenarios, really. If you’re a healthy volunteer, volunteering for, to take drugs that haven’t been tested on people before.

 

Yeah. I mean, I’m, I don’t - you see I believe in testing animals, which that - now that goes against the grain in the media, doesn’t it? You know, I actually think you should test animals rather than humans, and if a pig or whatever it is - pigs are meant to be very similar to us - use it. That’s what we eat anyway. Yes so...

 

And that’s as an animal owner, cat lover?

 

Exactly. Love them to bits, and I wouldn’t hurt an animal, but I think I’d rather test something - I mean the classic is the rats, isn’t it? Maybe they are treated bad, I don’t know, but at the end of the day they’re rats [laughter]. They’re bred, you know, to be for research, the same way as the only reason there are sheep in the fields out there, and cows in the fields, is because we eat them. You can tell I’m not vegetarian [laughter].

 

[laughter]. Yeah, I mean I suppose there comes a point where you do have to test in humans for the first time—

 

Yes.

 

--which is what happened to those people at Northwick Park*, that it was the first time it had been tried in humans, because at some point you’ve got to…

 

Yes, but if they’ve volunteered, as healthy volunteers, then that’s the chance you take, that’s the risk you take. In the same way I suppose even with what I’ve done I could have ended up with septicaemia from something, you know. I’m sure it’s not an impossibility, is it, that something could go drastically wrong, you know. However that’s the chance I’m prepared to take. But I’d be, I think partly there I actually believe in the Health Service, very much. I’d hate to lose the Health Service. I think it’s an important part of my, certainly my upbringing and it’s been there for me all the time.

 

 

*FOOTNOTE' The interviewer is referring to a Phase 1 trial at a commercial research unit based at Northwick Park Hospital in 2006 when several healthy volunteers became extremely ill. Early phase studies are carried out precisely because we need to find out about possible risks and side effects before giving the treatment more widely.

In her will, Chris has donated her whole body to medical research.

Would that worry you if it were used by commercial companies, Drug companies or...?

 

As long as it’s being given by the National Health Service, no, it wouldn’t worry me. Because that’s how money goes into funding drugs, I guess, so no, it wouldn’t bother me. To be honest I don’t really, really mind what it’s used for. If it’s going to help somebody somewhere, in the same way as my thoughts on when I die, I think in my will I’ve actually written - I mean nobody will want it - but, you know, my body is to be used for medical research, if that’s what somebody wants to do with it. If somebody can benefit then that’s fine.

Chris says she often gets a lump after having fat biopsies. The swelling usually goes down in about two weeks and it doesn't put her off.

But the next one - then I’ve had a second biopsy on the same, on the same day. They did another one. And that was at the back of me, and that one wasn’t quite as good. That one I actually felt it a little bit. As they put it in she said sometimes they catch a nerve. And it is quite, it makes you ooh [sharp intake of breath], like that, but it’s still, you know, it’s minutes, it’s seconds. It’s not, it’s like being a blood donor, you know. It’s a little pinch, it’s a little scratch, but they’ll move away. That one she said wasn’t so good. The down side is afterwards you have to press very hard for about twenty minutes on the actual hole, and that’s to stop or to reduce the bruising. And also you do quite often get a lump, and it’s quite a big lump, and that stays more than likely for about 2 weeks.

 

I’ve never ever, they also give warnings about infections. They go, a lot of effort is put into saying about infections, and they obviously disinfect everything and use all those really cold wipes and stuff. But, you know, you have to really press hard to stop any bleeding and to stop I suppose whatever else might be coming out. And you sort of, you sit there for like 20 - and 20 minutes is a long time to put pressure on something, and you have one nurse doing the pressure and then the other nurse is doing something else. But at the end of the day, yes, I had bruises, but they go after two to three weeks and they always put a plaster on it.

 

Has there ever been a point where you’ve thought, “Oh, that’s a bit too painful, a bit too much”?

 

No, no. It’s uncomfortable. It’s not painful, you know, it’s a bit of discomfort, a bit like blood donoring, that’s all I can relate it to, really. You know, there’s been a few things were you think – well, I suppose there was one, actually, not the last time I did something, the time before. That was a biopsy they were doing. And... I can’t remember what the doctor’s name was – well, that’s not relevant anyway. But he was really, really good but whatever he was doing didn’t quite work, and he did keep wobbling this thing, and it did go on for a bit, and I think he felt bad in the end, but I just said, “Carry on”. And in the end I did have I mean a really, really big bruise after that, I had a big heavy lump. But you see even that, if they always tell you, stress again, if after two weeks or after any time if you feel uncomfortable when you get home, phone them up, you know. So again, they would, there’s always the after care there if you need it, so it’s not as if you’re left on your own, just sort of “Oh well, tough”, you know. They do stress that “If you have any problems, do come back.”

The nurses stayed with Chris throughout the procedure and explained what they were doing.

They’ve obviously taken lots of samples. Some of it can be a bit uncomfortable. I’ve had various biopsies that they’ve taken from the stomach, and they always warn you that you may get a bruise. You always get a bruise [laughter]. It’s usually quite a large bruise. But it’s actually quite difficult, but they are so helpful, the nurses in particular, they stay with you the whole time, they explain exactly what they’re doing, and every sort of, I would more than likely think every ten or fifteen minutes, if they’re going to do something different, they’ll make sure you’re happy with what they’re doing at that time.

 

You can stop at any point in any of the studies that they’re doing, but I do have an attitude of if I’m going to do it, it might be a bit, you know, uncomfortable but you may as well see the whole thing right the way through.

Roland has been taking part in research about Motor Neurone Disease for several years. An eye test has been added to the other tests he has to do.

The only downside was I had to be at the hospital for half past six in the morning, so it was a bit early, but they provide taxis. So a taxi comes here, collects me, and then they give you, if it’s like a half day - for the scan that was only like an hour or two in the morning, and then I went to work [coughs] - but when I’ve done the other, the rest of the studies, a taxi usually picks you up about seven in the morning and then it usually finishes about half past two, three o’clock. They give you lunch.

Taking part is unlikely to cause you any harm, and will help others in society. It may help...