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Phil - Interview 11

Age at interview: 58
Brief Outline: Phil took part in a trial of medication for high blood pressure and cholesterol. He had some side effects early on, so the medication was changed. He has been very happy with the care provided as part of the trial.
Background: Phil is a retired post office worker. He is single. Ethnic background/nationality' White British.

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Phil first discovered he had high blood pressure in 1998 after someone noticed he had a reddened eye and he went to his doctor, who prescribed some medication. About a year later, his GP sent him an invitation to take part in a clinical trial, and straight away he thought it would be a good idea. He liked the fact that it gave him access to a clinical team who specialised in his condition, and had more time at appointments to monitor him and take a whole series of blood pressure readings.
 
The trial had two elements. One element was comparing two existing treatments for high blood pressure (beta blockers and ACE inhibitors) to see which gave the best results. Phil was initially started on a beta blocker plus a diuretic, but he quickly developed unpleasant side effects, especially feeling faint when he stood up. At his six-week appointment he mentioned this and was changed to an ACE inhibitor and after that did not have any problems. By the end of the trial, his blood pressure had stabilised and he was taken off the ACE inhibitor and just carried on with a diuretic.
 
The second element of the trial was comparing a cholesterol-lowering drug with a placebo (a tablet which contains no active ingredient). This part of the trial was ‘double blind’ – neither Phil nor the doctors knew during the trial whether he was taking the drug or a placebo. However, his cholesterol level started to fall and he guessed he must have been on the cholesterol-lowering medication.
 
The trial staff later organised a meeting for patients to come back and hear about the results. Phil was pleased to be involved in this and find out what had been learnt. He feels the specialised care at the trial clinic was very good, and he felt quite sad when the trial ended and responsibility for his care returned to his GP. The GP prescribed him another ACE inhibitor, which he didn’t mind as there were no side effects, but he wondered if it was really necessary. He has since joined another trial at the same unit, comparing different combinations of medicines in another ‘double-blind’ study. The unit is setting up a patients’ group for people who have taken part in trials to be able to keep in touch and provide feedback. Phil thinks GPs need to be more aware of what is happening in trials in which their patients are participating.
 
He advises other people thinking about taking part in a trial to give it a go, unless they have strong reasons not to. He always felt he was in safe hands and that if he had any problems he just had to alert staff and action would be taken. He knew he could stop taking part at any stage if he wanted to, but he never felt any concern about taking part.
 

Phil explains what the blood pressure trial was comparing and how people were allocated at random...

Phil explains what the blood pressure trial was comparing and how people were allocated at random...

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Well, there were two different types of pill they were trying. There was the old type, which is a beta blocker, and some of the newer pills, I think they’re called ACE inhibitors and calcium blockers. And they were trying to see the difference between the two types, whether one was more effective, whether the new type of pills was more effective than the old type. And the other thing they were doing was looking into how important cholesterol was, controlling cholesterol. And that I’d be on a, whatever combination of pills plus a placebo, which may or may not have been a cholesterol-lowering pill. As it turned out, it was, and my cholesterol came right down. So that was another, another benefit.
 
So there were two sets of comparisons --
 
Yeah.
 
-- going on?
 
Yeah.
 
So the first one was comparing just the hypertension treatments?
 
That’s right, yes, yeah.
 
And the second one was cholesterol?
 
Yeah.
 
Okay. Did they, how did they explain which group you were going to be put in and how that was going to be decided?
 
That was totally at random. It was just like a, put your name in a hat and whichever one came out that’s what you’d be doing.
 
You’re told right at the outset that if you’ve got, if there are any problems, let them know straight away, or after the six-week period and you’ll be taken off.
 
They, they wouldn’t let you do anything that would endanger you at all. You know, your life wouldn’t be at risk. So I never felt worried unduly, you know. I wasn’t, I was quite confident that I’d be, end up on a right, right combination, yeah.
 
What do you feel about the, the kind of information that you were given at the time?
 
Well, it was explained basically what the trial was about, and the type of pills they were. It was explained to you that all the, the pills being used were all tried and tested. They weren’t completely new. You weren’t like a guinea pig to that extent. You know, the main thing was to compare the newer type of pill with the old beta blocker, and to see what sort of results they got from that, plus the, what effect the lowering of cholesterol had. Because apparently, although they knew about, about the effects of cholesterol, it had never really been properly tested in conjunction with blood pressure reduction. So, you know, the whole thing was a new, new experiment, but it was all done with using drugs that had been used at least, you know, for some time. So I was always quite happy. I always felt I was in good hands and never really worried at all, you know. 
 

Phil joined a trial of medication for high blood pressure mainly to see staff who specialised in...

Phil joined a trial of medication for high blood pressure mainly to see staff who specialised in...

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What, looking back, would you say were your main reasons for wanting to take part?
 
Well, the fact that it specialised in something I had, a problem I had, and these were people who were specialising in that subject. So they were - well, I suppose they knew more what they were talking about, to put it, you know, put it bluntly [laugh]. It tended to be they gave you much more time. You went there and they took say nine or ten readings, which gave them a much more accurate reading of your blood pressure. Whereas your GP would only have time for one, usually just one reading, and very often it’s much higher than you’d expect, you know. What tends to happen is the first one’s high, the second one’s slightly lower and then the third and fourth ones are a little bit lower still, and then they, it starts to level off. So it’s a much more accurate way of, you know, finding the reading. And, yeah, I mean it’s so relaxed. You know, you’d there for about an hour, two hours. If you’re giving blood, you had to fast for twelve hours, so you had sort of tea and toast and biscuits and all that afterwards [laugh]. And you just felt you were being well looked after. You know, I wasn’t rushed in and rushed out.
 
Did, were you at all thinking about the wider importance of research for the rest of society? Or was that not really an issue in your decision?
 
Well, I suppose I was, but to be honest I think it’s more of a sort of personal thing, you know. I mean, I was glad other people can benefit from what they’ve found out. That’s a general thing. But at the same time it’s helping me. It’s my personal, you know, it’s a problem I had. So I was quite happy to do it. But I suppose, yeah, it, it does, it does make you feel better knowing you’re, you’re helping other people. Yeah.
 

Phil explains how the cholesterol-lowering drug and placebo were blinded, but he guessed he might...

Phil explains how the cholesterol-lowering drug and placebo were blinded, but he guessed he might...

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I knew what blood pressure pill it was. That was a particular brand of pill. The only one I didn’t know, of course, was the, the cholesterol thing. And that was, because that was like a separate, it was like the two studies in one. You know, it was on the one hand you had the blood pressure test, on the other they wanted to see what result cholesterol lowering had. So that was, that was the one you didn’t know if you were on or not.
 
How did they do that? Did they have a, sort of a blank bottle or something, with no label on, or how--?
 
Yeah, yeah, you’re just taking the pill and you’re just marked up with the, the, you know, the actual name of the trial, ASCOT trial. And it didn’t say anything. You didn’t know if you were taking sugar or a cholesterol-lowering thing. You’re just taking a tablet for, you know, several years. And it was marked up, it was coded, each one was like coded with your, I suppose your own code number and the trial number. So eventually they could, they knew at the end of the trial what, who had been taking what, but not, not during the actual trial.
 
So did the doctors send you off to another room to get that from someone else? Or did they just take the coded bottle out of the cupboard?
 
They took it out of a cupboard. While you, when you went every six months to have your tests done, while you were there they gave you the next six months’ worth of pills. There was the cholesterol, you know, the dummy pill, or whatever it was in one box, and there was the, the actual cholesterol - the blood pressure tablet.
 
But they didn’t know which?
 
They, no - well, they said they didn’t anyway [laugh]. I trust, I take it they didn’t.
 
It was hinted about halfway through, it was hinted at that I was on the cholesterol anyway. Because the, although the doctor didn’t actually, he couldn’t really tell me, he said, “I don’t know what the...” you know, he didn’t know himself which one I was on. But he said, “Whatever it is, I would keep taking it. It seems to be doing you good” you know. I mean, my cholesterol came down from about over 6 to about 3½. Which is pretty reasonable, you know. So having been told that, it was obvious that, you know, I was on the cholesterol pill. 
 

At the end of the trial participants were invited to a big meeting where the results were...

At the end of the trial participants were invited to a big meeting where the results were...

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And when they came to the end of the trial, had they said to you that they’d send everybody the results, let them know what the outcome was?
 
Well, we had a big meeting about, about three or four years ago. And they were saying that the, you know, the results had come through and from what knowledge they’d found, certain drug companies were now changing some of their methods and going over to making, you know, the new type of tablets. I think a general feeling was that the new type of tablets they were using were more, more beneficial, you know, the sort of ACE inhibitors, that sort of thing. And also the, there was a lot of information about the cholesterol lowering, which was much more, I think it was more beneficial than they’d realised, it had more of an effect than they’d probably realised before, and that cholesterol lowering was a much more important aspect now than it used to be - because it had never really been sort of looked into in conjunction with lowering blood pressure. That was the first real major trial where it had been, been tested. So I think that was probably the, the major breakthrough.
 
Were you pleased to find out what the results were? Had you been --
 
Yeah.
 
-- curious about what --
 
Yeah, I was. Oh, yes, certainly, yeah. Yeah, I mean having taken part in it I was, you sort of, I don’t know, you feel part of the whole thing, so it’s interesting to know what they, what they found. And it’s also good to know that they, they now realise what an important aspect, as I say, cholesterol is. So that’s, yeah, it’s pretty satisfying.
 

Phil suggests it might be a good idea to have more formal liaison between GPs and trial staff so...

Phil suggests it might be a good idea to have more formal liaison between GPs and trial staff so...

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Well, I don’t know how much the professionals are involved in these trials. I presume that they must liaise, they must be told about them.
 
As in your GP?
 
Yeah, exactly, your GP. I think it would be a good idea if they, if GPs, doctors got together with people doing these trials and compared notes. There may be things that, you know, your doctors, GP could be doing better, you know, as a result of these findings. It must be, you know, it’s obviously difficult for GPs, because they just haven’t got the time, you know, if you’ve got sort of six doctors and, I don’t know, five thousand patients or whatever, they obviously can’t give you individual treatment for very long. But I think it would be a good idea to try and liaise closely with some of these trial, trials that are going on and take note of things, of findings, and maybe change one or two things, you know. I mean I’ve got no, no complaints with the GP. I’ve, my surgery is pretty good, you know, the doctors are all good and quite sympathetic. But I think there’s a few things maybe that could be changed in conjunction with the, you know, these trials that are carried out. 
 

Phil felt a bid sad at the end of the trial – he missed seeing the team, and the feeling that he...

Phil felt a bid sad at the end of the trial – he missed seeing the team, and the feeling that he...

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What did it feel like at that point when suddenly it stops?
 
[Laughs] Well, I don’t know. A bit sad, I suppose, in a way. It’s like a, because you almost become friends with people, you know. You’ve known, it’s the same sort of, more or less the same team over the last five or six years. And, yeah, I was, I was quite happy. I was, preferred doing it through this trial, you know, than, as I say, the normal GP way of doing it. And, as I say, since, since the trial ended I’ve gone back to obviously my own surgery and, you know, you get the same little problems like I was saying before. You just don’t get so much time and it’s, you know, a sort of, a quick visit, just one or two blood pressure takings. And they’re invariably higher than they would be when you take a few extra readings. But unfortunately you can’t convince your GP that, you know, it’s, to do any more.
 
Because one thing that happens, when you come off these trials you go back to your GP, and you, at the time you’ve sort of lost contact with the trial more or less. You can still phone people up, you know, I mean you have the number. But once you’re off the trial you’re not really under their control any more, you’re back with your GP. And it might be an idea to try and keep in touch more, setting up these sort of patients’ groups, in case you’ve got any problems you want to refer back to the trial doctors. Because you may go to your GP and they might want to do something differently. You may not agree with it. So it might be an idea to get the two together and, you know, get them to liaise and perhaps you can sort out problems more, more that way. The problem with being at your GP is that he can, they do tend to come and go, you know. If you’re at the GP’s surgery, you may have the same doctor for, say, a year and then he leaves and another one comes, or you can’t always see the same doctor. So they don’t, they’re not really all that aware of your particular problem, you know.
 
Was that different at the trial? Did you tend to see the same people each time?
 
Well, it was a fairly small team, so you wouldn’t necessarily see exactly the same doctor, but you’d see one of, say, half a dozen either doctors or nurses who were there. So they all knew you reasonably well. You, they knew your, your history and your sort of medical condition. And you got to know the people there. So it saves going into all your background again, you know, and having to explain things. And so, I suppose sometimes the GP can look at the computer and see, you know, get the information off the screen, and he may not completely understand what your problem is all the time. You know, it’s not, when you actually know, somebody knows your problems, they’ve seen you several, over the last few years, you know, they get more understanding of what’s going on. So it’s, as I say, that might be an idea for, bring the two sides together a bit more, you know, comparing notes. 
 

Phil was happy with his first experience of a trial, and has recently volunteered for a similar...

Phil was happy with his first experience of a trial, and has recently volunteered for a similar...

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And after about a year I was contacted by the, by my GP to ask if I’d like to go on a, a medical trial looking into blood pressure and how to, various ways of treating it, which I, it seemed a good idea to me to do it. So I took part in the trial and that lasted for about, about six years. And I was glad I did, because the treatment was monitored, I was thoroughly checked twice a year, six-monthly intervals, and the whole thing was much more relaxed than going to the GP. It was friendly sort of doctors and nurses. It was all, obviously everything was tailored towards blood pressure. So they were able to, any little things that cropped up they were able to look into straight away, change the medication if necessary, and it was much more - well, I found it much more beneficial than going to my GP, and I was quite happy doing it. There were no real problems. After the initial trials, I was tested on certain, several different tablets and eventually they got, they found the right combination and blood pressure started to go down, in fact. So after about, I think it was about two years, I actually came off the blood pressure tablet and I was just on a diuretic. Blood pressure stayed fairly stable for the next few years and I was on, as I say, just a diuretic tablet until I came off the trials in I think it was 2006. I’ve since gone back to my GP for treatment and I’ve been, he’s put me back onto another type of a blood pressure pill. Personally I don’t think I need to, but that’s, that’s the situation at the moment. But I’ve just started a new trial, so I’m, I’m now under the supervision of another clinical trial and taking experimental tablets. I don’t know what that one is. It’s like a placebo at the moment. I’m not really sure what combination of pills I’m on. But I’ve had a check-up and so far it seems to be working, and the blood pressure’s at a reasonable level. So once again I’m quite happy to be taking part in a trial and being supervised. 
 

Phil would be interested to know how sport affects blood pressure. He was surprised to get high...

Phil would be interested to know how sport affects blood pressure. He was surprised to get high...

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Well, I suppose, I’m particularly interested I suppose in how it affects, sport affects it, because I’m, I’ve always done a lot of sport, like running and football, that sort of thing. I still do now, you know. In fact it never, blood pressure never affected anything I did it all. You know, I didn’t even realise I had it, really. But it might be interesting to do some research on, you know, blood pressure when you’re under sort of high pressure, running or swimming or whatever, and see what the effects of that, that are. I’ve had, you know, sort of working ECGs when I’m on a treadmill or a bike, and they’re taking your blood pressure and everything there. So I think it might be an idea to, you know, do a sort of intensive trial on, on blood pressure, to see what the effects are, you know, athletes or people who do a lot of walking or whatever, swimming, you know, high activity, and see what the results are from that.
 
To sort of help understand whether it’s a problem for people --
 
Well, that’s right, yeah, yeah. I mean theoretically it should be helpful, I would have thought, doing, you know - I was a bit surprised when I first realised I had high, or I was told I had high blood pressure. I was a bit surprised, because I’d always, as I say, done a lot of running. I used to run sort of twenty miles a week and swim and always played football. So you think of yourself as being sort of above any problems really. But of course, you know, high blood pressure is not actually a disease or anything. It’s not a, an illness. It’s just something you’ve got. And it’s, you need to know you’ve got it because it can lead to strokes or heart attacks. So even if you’re fairly young and fit, you should be aware that you’ve got it and try and keep it under control.
 

Phil encourages others to think about taking part in a trial unless they have real fears. You’ll...

Phil encourages others to think about taking part in a trial unless they have real fears. You’ll...

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Well, as I say, if you’re asked to or if you’re approached to be going on one of these trials, obviously think about it, you know, think what it involves. But I would be, I’d tend to encourage them to do it, you know, go in for it. You can always pull out. You don’t, you’re not stuck there for a year or two years or whatever. You can always, if things are not going right, you can always pull out.
 
But I would encourage anybody to go ahead with it, unless they’ve got any real fears about it. You know, I think you’re in good hands and, as I say, you’re being monitored, you’re being checked all the time. It’s specific to the problem you’ve got, so you’d be getting more individual, you know, more specialist treatment. And it tends to be more relaxed in going to a hospital than to your doctor’s, you know. So I’d, I’d encourage anybody to, to do it, try it. And if, if there are any problems, let them know straight away, you know. You have to, you know, if anything does go wrong, obviously you’ve got to speak up and tell them you’re not happy. But I would encourage anybody to, to go ahead. 
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