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Charles - Interview 29

Age at interview: 68
Brief Outline: Charles volunteered for two trials, but ended up unable to take part in either of them. The first time he did not meet the eligibility criteria. The second time was because of an administrative mix-up about his age, and he feels it was not well handled.
Background: Charles is a retired chief engineer. He is married with 5 adult children. Ethnic background/nationality' White British.

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Several years ago, Charles was invited through a letter from his GP to volunteer for clinical trials being conducted by a privately run clinical research centre. The first trial he volunteered for was one in which the company was looking for men at risk of prostate cancer. Charles suspected his father might have had the condition, and knew he was at an age when the risk of prostate problems is increased. He also had a friend who had prostate cancer. His family were keen that he should be tested, so he volunteered to take part. Initial blood tests showed his risk was very low, and so he did not meet the eligibility criteria for the trial. He was pleased to discover he was at low risk, but agreed to stay on the company’s database in case they had any other trials that he might be eligible for.
 
In 2005 he was invited to take part in a trial of treatment for erectile dysfunction in men aged 55-65. This would have involved being randomised to either a group receiving a placebo, or a group taking a drug similar to sildenafil (Viagra), but taken by nasal inhaler. The hope was that this would work faster than a pill, reducing the time you have to wait before intercourse. Charles thought this sounded useful and that he would like to try it. If he had been allocated to the placebo group he would have still found it interesting to see if he experienced any placebo effect. He also had to discuss it with his wife, because taking part in the study meant you had to have intercourse at least once a week. He discussed it over the phone with the trial staff and – as he thought – agreed to take part, and confirmed that he was eligible.
 
There was then a few months’ delay until Charles was called again. He had a first interview appointment to discuss the trial in more detail, and was then asked to come back for a second appointment to have medical tests and sign the consent form. It was only after he had gone through the whole process that an administrative worker noticed he had had a birthday between the first and second appointment and had now turned 66, so he was no longer eligible to take part. He was disappointed to be turned down on a technicality after having got so far through the process.
 
Charles felt that he had been let down by the system and that it was not well handled. Although the doctor seemed apologetic, no-one else said sorry or wrote to him afterwards to apologise. He originally felt taking part in trials was an interesting project to keep himself busy after retirement, as well as something that could be of medical value to him. After his disappointing experience, however, he has been reluctant to respond to further invitations from the company to join trials. He might volunteer for a trial again in future, but it would have to be something that he felt would definitely benefit him personally.
 
 

Now Charles is on a research unit database he hears about other relevant trials, but many people...

Now Charles is on a research unit database he hears about other relevant trials, but many people...

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Do you think there’s more that could be done to make people aware of these opportunities? You found out about it through your GP?
 
I suspect there are, because the ones that have come through to me, I mean I’ve only had from my GP ones on various cardiac conditions, and that has been very much a pass-through note from the research area. And it was only then from that research area that they identified a large number of areas that they were doing various trials in and asked, you know, whether I’d be interested in any. So I’m not sure how you would be aware of the others if - I mean, at the moment the only source is really the GP, and I think they’re very selective in what they send out, probably.
 
So I suspect, you know, there’s a large area of the population which is missed.
 
Yes, it’s fine once you are on a database like this but…
 
Yeah, I mean once you’re on, you’re okay, but how you get on in the first place I don’t know. I mean, I certainly wasn’t aware of this company before I visited them, and I mean this’ll be only one of several, I suspect. 
 

Charles volunteered for two trials on prostate cancer screening and a new treatment for erectile...

Charles volunteered for two trials on prostate cancer screening and a new treatment for erectile...

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Well, the prime reason was that a friend of mine did have prostate problems, cancer, and there was, you know, my family was sort of saying, well, I’m at the age group when you ought to be tested, though I know there is a lot of literature written about this particular subject and it’s almost debatable as to whether you, there’s an advantage of knowing, because a treatment sometimes is debatable as to whether there’s a benefit or not. But I was interested, and because I felt that was a decision that I should make if I was, and so when it came up to alleviate the sort of pressure that the family put on you [laughs], I was quite happy to go ahead with it, putting my name forward. And those sort of things interest me. I mean, I don’t have an issue.
 
And you mentioned earlier about retiring and it being a way of --
 
Oh yes, yes. No, I think that is also an influence, I mean you know to get a trip over and see another – well, in this case it was a fair journey to go to where their testing took place. And you know, you meet new people, you talk about different things, and that’s always of an interest to me. And therefore I think I like to keep busy, so it fitted in to the, my mental [laughs] at the time. You know, I sort of felt that would be a good thing to do.
 
Kind of--
 
To fill the day out a bit more--
 
Mm.
 
before I got too busy on other things, which I have now [laughs].
 
[laughs] Mm. And often with these trials there’s a mixture of motivation for people. A bit of it’s about wanting to do it for yourself, maybe as you say about wanting to do it for your family, sometimes just wanting to support medical research. How would you say those balanced out in your case?
 
Oh, a selfish one, I think, primarily. Not, I’m not talking about going for putting my name forward for various trials, but this particular one that we’ve been talking about today primarily. Yes, I was wanting to know whether this might be, you know, a help to me because of the obvious disadvantages with the current method of help that, you know, Viagra or whatever. I mean, they work but it’s very cold blooded, and quite often there’s a very significant delay, and quite often that delay is not acceptable [laughs]. 
 

Charles volunteered for a trial involving prostate cancer testing. He was pleased to discover he...

Charles volunteered for a trial involving prostate cancer testing. He was pleased to discover he...

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I believe I first heard - I mean we’re going back to 2004 - from the local surgery, my doctor, and it was just sending through presumably a circular that they had received asking for volunteers for a certain testing that this particular company wanted to carry out. And I just took it up, because they said that if you wanted to, phone a certain number. So I phoned that number and they identified one or two areas that they were interested in having volunteers. And the one which I was interested in at the time, because there was a lot of publicity about it, was prostate cancer testing, advanced testing, and they wanted to trial some new in inverted commas cures that they had. And there was a phone call, then an appointment, and then a number of visits, the last one being where they took tests, blood tests, basically associated with a fairly basic medical, and then you waited and then ultimately you got a result back. And in my particular case the measurement that came back from the blood tests was below the level which they were after to conduct their further research, because I fell into the category which would have been negative as far as they were concerned. So I didn’t go forward to actually taking whatever they were prescribing whether it was pills or drugs I don’t know. So that was the end of it.
 
How did you feel about that at that particular point?
 
Oh, I felt very pleased, because although people kept this very to themselves, I’m fairly certain my father suffered from prostate problems. He never called it cancer but I would suspect it might have been. And therefore, you know, you were aware that that was a possibility, and therefore if I could eliminate that, that would be a benefit.
 

He volunteered for another trial, testing a nasal inhaler for erectile dysfunction. He checked at...

He volunteered for another trial, testing a nasal inhaler for erectile dysfunction. He checked at...

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And I suppose in 2006 they sent through something on - I have to look at my list, [laughs] what do they call it now - erectile dysfunction, which I was obviously fairly interested in bearing in mind my age. And so I rang in again and yes, they were interested, and I mean it was a very simple sort of yes/no telephone conversation at that stage. And so in this particular case they called you in for the first interview. And the first interview was again fairly - well in my, in this particular case the phone call that I originally had was the latter part of 2005, but then for various reasons, nothing to do with me but to do with I think the funding for the scheme that they were doing, they postponed it for a few months. And they contacted me in sort of March time 2006, and so the first interview took place on, in early April 2006. At that stage I was sixty-five.
 
Now the test, or the funding that they’d got was for research into the age group of fifty-five to sixty-five, and I clarified this at the time and they said, “Yeah, no problem at all, sixty-five is fine.” And so I went through that first test. Now I thought that I would be enrolled at that point in time on their scheme, which if you were involved a number of visits, probably lasting over six months or may even be more. So it was not a sort of a once off visit, it was a continuing sort of trial. So I passed the first one - [laughs] if you pass anything - and then I went back for the second one, which happened to be on the 19th of April. That date is important because my birthday is the 8th of April, and that is when I passed from sixty-five to sixty-six. No comment from them when I went back on the 19th, or even previous -because they had all my particulars as far as my birthday was concerned. So I went back, and this was far more, it was fairly lengthy, actually. I suppose it was about a two-hour visit with little waits in between, because you saw various people, and you went through, not an exhaustive but a fairly comprehensive medical, where they tested all the normal things, you know, blood pressure, heart rate and listened to various things, ultimately ending up with a blood test or taking blood samples.
 
And you had an interview at that stage with a doctor who explained the purpose of this particular trial, how it would be carried out etcetera, and it sounded quite interesting, because they were exploring a, an inhaler variety, rather than taking a pill like Viagra or something else, they were exploring I suppose something like - they showed me actually - it looked like a normal asthma inhaler and which was meant to have more or less an immediate result, because it went straight into your system and they were very hopeful at the time that it would get over the problems which most pills have where there is a length of time between them [laughs] being taken and working, if they work. And by that time you may not want to or may not feel the, the moment has passed.
 

After a lengthy second appointment, an administrator spotted that he had just turned 66, so he...

After a lengthy second appointment, an administrator spotted that he had just turned 66, so he...

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But what happened was that at the very end of my visit on this fairly lengthy, you had a sort of a clear up session where I signed the forms and consent form, and they pointed, someone noticed - it was actually not the doctor, it was an admin secretary - that I was now sixty-five, sixty-six rather, and the trial was to sixty-five. And so they went into a huddle, not in my presence, and they basically said due to which they felt - and they may have been correct - problems with funding that they might have, they felt that they couldn’t enrol me on the trial.
 
Now having gone through, and all the preparation talking to my wife, going through and getting excited or otherwise about the prospects of maybe some new solution on the horizon which I’d participate in, to be told suddenly it was all off you obviously feel let down a bit. And so that’s really my experience of that. Since then, though they’ve approached me on others, I have not taken part in any tests with them. Two reasons' one, I, they haven’t really come up with one which really interests me - not on the same subject by the way - but the other one is I’m just you know, I feel a little bit less enthusiastic [laughs] than I was before.
 
It was typical administration, I thought, if I’m honest with you [laughs].
 
And did they apologise, or write to you afterwards?
 
The doctor did. They didn’t write to me, no. I think the doctor was a bit sheepish. That was a woman doctor, she was, had a very nice manner to her, but certainly the admin people didn’t. I was just a number as far as they were concerned. And, you know, I never got a letter back or anything of that nature, no. I just got my expenses paid, or my mileage paid, and just left. Had a cup a tea [laughs].
 
And the wider implication, as you say, is that longer term this has slightly put you off.
 
Oh, yes, anything like that has that - you know, you tend to have a bit of a blockage if, certainly if you can’t see a logic to it. And I mean black and white, yes, I can see that they were probably right, but there is such a grey area there that I cannot believe that any logic would have - you know, I just think they were wrong in their judgement call.
 

He did not mind the idea of a placebo, and would have been curious to see if he was susceptible...

He did not mind the idea of a placebo, and would have been curious to see if he was susceptible...

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One thing that I’d like to go back to is that this was going to be a placebo control trial--
 
Yes, yes.
 
-- and what your thoughts were about being randomised and perhaps ending up in the placebo group - would that have mattered to you?
 
I thought about it and I think the answer, it didn’t matter to me from the point of view of taking part in the trial. I think it would have been interesting to me to know how I would react in that situation, because they do say that you are - how shall we say - influenced by, you know, your mental state at the time as much as anything else. So I’d be interested to know whether I was one of those people that was influenced or not. So it didn’t concern me, and I did think about it and I made a positive decision to go ahead regardless.
 
And you wouldn’t have known during the trial whether you were on the placebo. Do you know if they’d have told you at the end?
 
They would have told me, I think when I asked a question of the doctor at the time, they would let you into it at the end, obviously not during the course of it.
 
They would have told you. I would like to think I would have been aware [laughs], because I actually asked the question what happens, you know, if things weren’t happening, because, you know, it’s these moments when they come you want to take advantage of them [laughs]. And if it wasn’t working then I’d want to take some other form of help and basically they said you could drop out of the trial at any stage, and so that satisfied me on that particular question.
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