Harry - Interview 07

Age at interview: 83

Brief Outline: Harry took part in a trial of medication for high blood pressure. He had some side effects early on, but otherwise has been very happy with his care and how well he feels.

Background: Harry is a retired post office worker, widowed with 1 adult daughter. Ethnic background/nationality' White English.

More about me...

Harry was first invited to take part in a drug trial over 10 years ago, through his GP surgery, after he had been diagnosed with high blood pressure. At the time he was not taking any medication. He went to a hospital clinic and was assessed as eligible to join the trial. The first drug he was given was all right at the original dose, but when they increased the dose he felt painful tightness in his chest as if he were having a heart attack. The doctor Harry saw at the clinic reduced the dose again, but he still had the same side effects, and feels the doctor should have anticipated that and changed the drug straight away. He decided to withdraw from the trial and not to go back to the clinic, until the clinician running the trial rang him to ask him what the problem had been and encouraged him to come back for another review.

 

After that he was changed to a different drug, and he has been on the same one ever since with few problems, although once he found it was interacting with another drug he was taking for something else. It made him feel suicidal. He does not remember being told by the clinicians running the trial that there might be any interactions, but he has since discovered that he should not take the two drugs at the same time of day and then the problem is avoided. On another occasion trial staff had increased his medication and this caused his blood pressure to become too low. This was picked up by hospital staff caring for him when he was admitted to hospital for something completely different. The hospital rectified the situation and returned his blood pressure to an acceptable level.

 

On the whole he has been very pleased with the care at the trial clinic, and is glad that he has had the opportunity to find a drug that really works for him. He feels very well and fit for his age. Most of the staff have been very professional and he trusts them. One exception was a young nurse who got into a heated discussion with him before taking his blood pressure for routine monitoring. This heated discussion made him agitated and caused his blood pressure to increase, and he did not think her approach was sensible. Other staff were very good at making sure he felt calm and relaxed before checking his blood pressure.

 

Harry is glad he stuck with the trial, and advises anyone else who gets side effects during a trial not to give up but to go back to the clinicians and get help and advice. His main reason for taking part in the trial was for the benefit of his own health, but he also hopes the results will benefit other people in future.

Having already completed one trial, Harry didn't want to join another one run by the same...

I was quite pleased, I was quite pleased I went back, and I was quite pleased I continued right to the end. This new one they’ve got, I’m a little bit twitchy about that one. I wouldn’t be very keen on that one.

 

Is this the new trial?

 

The new trial. I’m not, I wouldn’t be very keen on that one.

 

Did you go and find out whether you were eligible?

 

No. I said, “No, I couldn’t, I didn’t think it would be appropriate for me to.” First place their target is 140/90. That’s blood pressure. And I’m about that more or less. The other thing about it - I don’t know if this, you could turn this off at this, you could erase this one. It seems unrealistic to have been through a medical procedure that’s got your blood pressure down to acceptable levels, and then asking you to stop taking your medication and let it go up again, and start again all over with a new drug.

 

Is that what they wanted to --

 

That’s what it was, that’s as I understand it, you see, which I consider that to be procedurally correct for a medication, for a medical profession, but I would consider that to be, and especially at 84, to start jinking about with that sort of thing, they’re asking you to deconstruct your medical procedure which is found to be satisfactory and start all over again like you was from the beginning. I thought they might be happy get to people who were just started with blood pressure. That’s what I thought might have been a better thing, you see. But they was rushing to sign on for this like it was, I was looking at them and thinking, “I don’t know. Perhaps they feel comfortable coming to hospitals and having people look after them and that.”  

After the dose of the drug was increased, Harry had bad side effects. He almost gave up, but the...

My first experience was slightly, a slight disaster. Well, what happened was that they took my blood pressure and it was over 200, so I was in the right place. They then gave me a medication, 50mg of atenotol [atenolol] I think it was. And that was all right. And then after two or three weeks, after I’d been up there two or three times, they put me onto 100. And I woke up one morning, I thought I was having a stroke, like bands of steel round your chest, I couldn’t breathe. I thought, “Well, this is how people feel when they’re going to die” you know. So I got up and I pottered about and I thought, “Well, I’ll tidy the place up”, you know. I like to if somebody comes in. And I couldn’t think what to do. And I sat by the street door in a chair, because I thought, “Well, if I fall off the chair, somebody will see that I’m not very well.” Anyway after about half an hour it went, disappeared. So I thought, “Well, that’s, that is, that’s useful.” So I phoned ASCOT and told them about it and she said would I come up right away? So I went up there. And he, I didn’t see the same doctor that had gave me the pills, but he had a look and he said, “Well, I see you had been on 50. You went onto 100 and then you had the trouble?” And I said, “Yes.” He said, “Well, I’ll put you back on 50”, which seemed reasonable at the time. Except that once you’ve been primed with 100 and you went back to anything below it, you got 50 per cent of the reaction that you did with 100. So I, I got the same thing back again. But I thought, so I don’t know if they were a lot of apprentices up there, but they should have known about that. They should, it wasn’t a new drug, it was an old drug - unless he was trying to do something for his statistics. And I was so annoyed about it, I never went back. I thought they should have known about that. That is something I thought they should have known about. I couldn’t expect them to know that it would affect me adversely, because I’d never taken it. But once I had taken it and the pattern begin to emerge I thought he would have said. I saw it, and I don’t know nothing about medicine. Anyway I never went back.

 

Then I got a phone call. I think it was from [doctor] enquiring why I hadn’t turned up. So I explained to him what I’ve just explained. And I just had no choice other to explain it completely. No watchwords. Just tell it exactly how it happened. I said, “And quite frankly” I said, “I was a little bit alarmed about it.” I said, “Because if you look at it, I’ve come to see you quite well and finished up in a sort of personal disaster.” Anyway he explained it to me. Over an hour he was on the phone. And I was determined not to go back. But he was so, he was like he was treating me like I was somebody rare. So I thought, “Well, I must honour his concern for my welfare.” So I went back again. And he put me on another medication, that I took right the way through all the years I was in there. And it worked. So I was glad I went back. So the important thing with this is that if you go on one of these long projects, these clinical trials, don’t be discouraged if something goes wrong. Because it’s the overall picture that counts.

 

FOOTNOTE' It is important to report any side effects promptly, as this tells the researchers something important. They may be able to help manage the side effects, or advise you whether you should stop taking part. Withdrawing from a trial because of side effects is entirely reasonable and no-one should feel they have to stay in for the sake of the trial or that they have failed if they stop.

Trials are designed to find out things that don't work. Doctors are there to help, and if you...

And so apart from that, there weren’t any times when you thought, “I’ve had enough of this. I want to stop”?

 

No, no. Because by then I was beginning to understand that this is a project, and it’s designed to find out things that don’t work. When the things don’t work, stay there and get them straightened out. Don’t do a runner. You know what I mean? That’s, and of course that’s a, I’m, I was beginning to learn that, so that when I got a bit, all I did was I went back and told them, you see.

 

[Laughs] Are there other things that you’d want to say to anybody else thinking about whether to take part in a trial?

 

Well, it’s diff-, see, it’s very difficult to say. A lot depends on what kind of trial it is. A lot depends on, there are some trials which you - the pain’s so excruciating, so that any trial, any effort, they will take it. “Stop and think, that’s all you’ve got to do.” Stop and think, stop and think. Apart from very, very rarely, the people in the medical profession are there because they want to help you and if, you’ve just got to give them the opportunity to do that, you see. But as I say you’ve got to, you’ve got to use your – it depends, as I say, sometimes I look back on it and I think, “How could I have been so silly, not wanting to go up there no more because the tablet didn’t, the tablet didn’t work?” I should have known better than that [laughs]. You know what I mean? Because I think basically people are frightened of going to the doctor, they’re a little bit nervous. They leave it and leave it and leave it.

Harry had two unexpected drug interactions when he started taking other drugs alongside the trial...

Were there ever any times when you thought about dropping out of the trial?

 

Only at the beginning, only at the beginning. See, I had no idea, I’ve been very lucky really. I’ve had some operations. I got into a bit of trouble during the war, but I come out of that all right. So I really had no expectations at all - or my expectations were very naive, that I’d go up there, they’d give me the pills and I’d live for another fifty years, see. But it’s a little bit more complicated than that. And it’s only when you learn about it that, when it - now for example I got acid. And I went back to my doctor and told her, “I’m taking ever such a lot of acid tablets and nothing seems to be working.” So she put me on some medication. Right? And… I felt suicidal. You know, I actually felt suicidal. And I’m not the suicidal - because I like myself too much, you see. So I thought, “Well, I’d better go back and talk about this one.” So I went back and told her. So she sent me to hospital and I had an endoscopy, where they had a look down. And so, what - have I told you about this before, about, about the acid tablet, what they did?

 

No.

 

So she said, “It’s surprising.” I’ll, I’ll remember the name of the, of the tablet. “It’s surprising” she said. “These tablets they’ve not been noted for doing that.” “Well” I said, “I could, the best way I could guess it is to say that what’s happening is the acid varies and the medication doesn’t.” So if I’ve got a lot of acid and there’s a lot of tablets, it’ll get rid of it and I won’t get any problems. But if on the other hand I haven’t got very much acid, the strength of the tablets is constant and it’ll work on the acid, and when it’s gone it’ll work on all the other stomach, stomach fluids, the digestive fluids. And that is what could cause, be causing the problem. Anyway she put me on a lower tablet and it went away. I never had it any more.

 

So, then I started getting, I think I told you, started getting hallucinations, get a bit - and I was taking two tablets together. Right? So what I did, I separated. Now tonight I’ll take the statin drug at 5 o’clock and the other one I’ll take at 9.

 

And I took one a day for, I suppose I took one a day for years. Anyway, later on I was given another drug that had nothing to do with what I had. And I was taking them both in the morning. And there was something going on with the drug that – if you’re with a drug and you notice a pattern of behaviour and you try and make a note of it, you can note any change when it occurs. If you’re lucky. Right? Anyway, I thought, “This bendroflumethiazide, it’s a bit feeble. I wonder what’s going on?” And I never thought about it too much. Anyway, by that time I eventually ran out of the, of the drugs which they were providing, and I had to go on the same drug which I got from the chemist. Because when you get a drug from the chemist, there’s a leaflet in there telling you about the drug.

 

So I had a good look at the leaflet and it was speaking about, it spoke of another drug that if you have to take this drug, it’s best to leave it for two hours before you take this other, otherwise it appears to affect the efficiency of bendro-. And that’s what I did. I wasn’t taking that drug, but I used that as a criterion, “Leave a space of two hours.” And everything went back to normal again, you see. So

 

So that’s just a question of the information that you were given?

That was just, there was no information there from ASCOT*. Although it, I have to be fair. They may have said, “Are you taking any other drug?” And if I’d have said, “Yes”, then they might have told me, they might have. But I can’t remember if they did. But nevertheless it, it was the writing in the, [cough] what you get with it, alerted me to the fact that it was affecting the, the efficiency of the other tablet.

* ASCOT = Anglo-Scandinavian Cardiac Outcomes Trial

 

Harry had regular monitoring tests. Most staff were excellent, but one nurse started a debate...

And I would say to anybody that gets into these big, gets into these big things, “Over a long period, don’t be discouraged if it goes a little - give them time to sort it out.” And they do, they do sort it out. The, actually I was right the way through, when you go up there, you present yourself at the desk and you tell them your name and they sit down, and you sit down there quietly for ten minutes or so. And the nurse comes up and she goes like that [raises hand], and that’s a signal to come with her. So you go with her. And you take your coat off, she never says anything, roll your sleeve up and you’ll sit there for a few minutes, then she’ll take your blood pressure. Right? So what she’s done, she’s created a tranquil environment from which to find out what your blood pressure is at that particular time. And they always come out 130, 134, which is ideal from their point of view. But one time I went up there, there was, I think she was, she was very pleased with herself, a sister who’s qualified, looked like she’s just qualified. And I went and sat down and she started an argument about women’s lib. So she said to me - what did she? Oh, “Women can do what men can do.” I says, “What you talking about?” “Well, they can change your boyfriend or whatever.” It’s not the kind of argument I like. And she went on and on and on and on. And then she took me blood pressure and it was 150, you see [laughs]. So that’s the sort of thing, it’s one of the essentials. Blood pressure’s a very uneven thing. It responds to all kinds of mood changes, noises, somebody’s voice, everything, every, all of those sort of things. So that what you’re doing is you’re looking for to create a tranquil environment in order to test the blood pressure under those circumstances. And that forms the basis of your evaluation, you see. And another time they said to me - oh, I’d been going there - “Would you, have you, do the Edinburgh step test?” So I said, “Well, I’m not into Scottish dancing. What you talking about?” They said, well, what they do is they take your blood pressure and then with the thing on walk you up and down a step, walk you up and down steps. And what happens it causes your blood pressure to go up. And then you stop. And then they see how long it takes to go back to normal, which I think was a very sensible thing. And it went back to normal, as soon as I stopped breathing heavily it went back to normal. So I thought, “Well, in that respect the medication must be working.” Right? Because a doctor can’t prescribe for every mood you have, he just can’t do it. It’s impossible. He’ll go for the average and give you that test, and that test will show you how long. They deliberately put your blood pressure up and then they stop and it comes right down to normal. So from that respect it would seem to be a success. 

Harry got a letter from the trial clinic saying his name had been put forward by his doctor. It...

Well, I received a letter from somebody called ASCOT* and it was self-explanatory. They explained what their function was and they said that my name had been put forward by my doctor. Anyway it wasn’t, if you didn’t want, you didn’t have to if you didn’t want, but anyway I read about it. Now round about that time, I think I was 72, about, and I thought it would be a good time if I would have a medical procedure which would find out whether I had any age-related conditions which you would get but you wouldn’t know about it until it hit you hard, you see. So I thought that would be a good idea. So I put my name down, and I went up there, so I went up there.

 

*FOOTNOTE' ASCOT = Anglo-Scandinavian Cardiac Outcomes Trial.