Brian - Interview 06

Age at interview: 71

Brief Outline: Brian took part in screening for unrecognised heart valve disease in 2010. He was told he has a very small leak in one valve and was invited to attend a follow-up hospital appointment. We spoke to Brian after he attended each of the appointments.

Background: Brian is a retired college porter. He is married with 2 adult sons. Ethnic background/nationality' White English.

More about me...

 We interviewed Brian twice about his experience of taking part in a new research programme involving screening for previously unrecognised heart valve disease. Brian and his wife were both invited to participate in the screening research. They both decided straightaway to take part, for their own health benefit as well as to help other people through the research. Brian’s wife told the staff she was worried she would have difficulty lying on her side for the screening, but they said they would give it a go anyway, and in the end they managed to get round the problem. She was told she had no heart valve problems, but Brian was told he had a small leak in one valve. He was reassured by the staff that it was unlikely to give him any major problems, and he is waiting to hear whether he will need a follow-up appointment at hospital and further tests. 

 

Brian was already taking cholesterol-lowering medication, and also has diabetes. However, he went to the screening not expecting anything to be wrong, as he had only recently had some tests for pain in his chest and abdomen which had come back negative. He is not particularly worried by the results, but it remains a concern. As Brian says, ‘You’ve got it in the back of your mind that something is there’, especially as there is some family history of heart problems. He also had polio as a child, which has now left him with some muscle wasting as a result of post-polio syndrome. He mentioned it to staff at the screening appointment, as he wondered whether it could have contributed to the heart valve problem, but they did not think it was significant.

 

We spoke to Brian for a second time after he had been to his follow up appointment, which he estimated took place about three months after his first screening. In the time between the two appointments, he neither thought nor worried about his initial diagnosis of a leaky heart valve. The second screening test, which he was told ‘probes deeper’ than the first, revealed that he also has a small leak on another valve. In spite of this, he was told that he had ‘nothing to be concerned about’ and was happy to accept this. As far as Brian is aware, he will not have to attend any further appointments. He assumed that his GP had been informed about his diagnosis, but has not discussed it with him. 

 

Brian feels the staff were very good and explained everything very carefully. After his first appointment he felt he would have liked some information about heart valve disease because he knew nothing about it and does not use the internet. However, reflecting on his experience of screening after his follow up, he felt that he would not have liked any information as it may have made him worry unnecessarily. He said, ‘The less I know about it probably the better’.

 

Brian is very glad to have taken part in the screening because he has been reassured that he has no serious heart valve problems, and recommends others to think positively about helping medical research. He reported that he has been approached to take part in other research projects, but has refused to saying, ‘I’m doing the one that I think is most important’.

 

If you find out you have a heart valve problem, Brian wonders if this will affect your chances of...

As you try to get holiday insurance, especially once you’re over seventy, you have to give all your medical history and that, and whether one of these scans and surveys would jeopardise getting holiday insurance is a problem that you have to think about, because at the moment, I mean obviously you’re going have to pay, you get to seventy you pay more anyway, but a lot of these insurance companies, as soon as you say you’ve got a certain problem they just say, “Oh, no. We can’t insure you.” So you’re stuck.

 

And you’re not sure whether this is something you should tell them about or not?

 

That’s true, yeah, because I mean I like to tell the truth on anything that I’m dealing with. I mean, I won’t tell a lie to anybody, and do you have to declare it or don’t you declare it? Even if it’s something that is, it’s not bothering you in any way, but should you tell them that, you know, that you’ve had this done and been told? 

Helping other people is important to Brian and his wife, and it was an easy decision to take part...

When you got the letter, what were your first thoughts? Was it something that you decided about pretty quickly?

 

Oh, yes. I decided straight away that I would like to have it looked into, for my own benefit and, as I say, for other people if it will help. So this is the reason why I like to take part in such surveys or whatever’s going on, providing I think it’s one that could benefit myself or other people.

 

Have you been in other research projects in the past?

 

No, I don’t think I have.

 

And if someone came to you with another one in a few weeks’ time, what would you think?

 

It depends on what it was for and if I thought it would benefit other people, besides if I thought I had a problem with it as well. Then I would think about it seriously.

 

Yeah, and your wife also got the letter and.

 

She’s had a letter, and she went for the scan, but the scan come back that everything was okay.

 

And did you talk about it together? Did you discuss it?

 

Well, we always talk about scans and everything like that, and she always says that if something comes along to benefit other people, then we should take part, and this is the way we think, along the same lines, really.

 

Okay. So it wasn’t a big decision for either of you?

 

Oh, no, no, no. 

Brian is happy for any of his organs to be used for transplant or research. He is in favour of...

Well, I’ve always said, I filled in a card to say that if any of my parts can be used to help anybody else, then I’m quite willing to do it, and my wife is also of the same opinion. And I think that all this research on animals, if it benefits anybody, I think that it should be carried out. You know, I mean all this trouble with the university over that, and its labs and that, I thought that was ridiculous, really.

 

And the card that you carry, is that for giving your organs for transplant or is it also for research?

 

It’s mainly for transplant, I believe. Well, I mean, obviously if it went into research I wouldn’t object to that either.

 

Yep, yep. I’m not sure, actually, if the cards - I think the cards are only aimed at transplant. I mean, maybe that--

 

No, I’m not sure.

 

--would be something that we could have special cards for people to carry for research, perhaps.

 

That’s maybe a good idea, because obviously, I mean, I’ve got a card but I take it it’s for people to use my parts or whatever, but whether it’s just for transplant or research I really wouldn’t know.

 

Yeah, and you’d be happy with either.

 

I’d be happy with either, yes. 

Brian has been asked to take part in more research since and feels 'you can be pestered with too...

And just, before we started the interview you mentioned to me that you’d been contacted by other researchers doing other projects …

 

That’s true, yeah.

 

So…

 

I mean, I had one a couple of weeks back, but I can’t remember who it was now, to be honest. And but I did tell them that I wasn’t interested. I was just doing the one which I’m carrying on with. And I think at, at the present time I haven’t got more time to, to put into these things, you know. I mean, I think one is sufficient. I said, “I’m doing the one that I think is most important”. I think it was some kind of survey they was doing or something, but I told them twice that I wasn’t interested. So…

 

You had to tell them twice?

 

Yeah, I had to tell them twice.

 

Yeah, they come back a second time and they sent me a letter saying that they wrote to me in the past and I, and this and that and they wanted to come again. But they didn’t ask me to make an appointment with them. All of a sudden they just turned up. They was lucky to catch me really, because I’d been out and I’d just come in, just put the car in the garage and they was on the door. But I told her, I said, “No, I’m not interested.”

 

And I know you’ve been positive about encouraging people to take part in medical research.

 

Definitely.

 

But do you think that people who are involved in one project should be left alone by other studies?

 

I think you can be pestered with like too many. And one wonders if at times that one people tell others and it gets passed on and then on and on and that’s the reason you gets contacted. I do think that happens.

 

So once this one has finished would you be willing to take part in other ones?

 

Only to do with what I’m, a follow up on this one, yeah, I’m quite willing to carry on following up on this one. But I won’t take any part in any in future. Unless it’s something to do with, I mean, if there was something to do with the polio or something like that which do involve me, then obviously I would take part in anything to do with that. 

Brian couldn't fault the way the technician explained it all. She showed him the pictures on the...

Oh, she was very nice, very nice, and tried to explain everything in detail. I couldn’t fault the way that she put everything over. I mean, and as I say, at the end of it when she found this small leak, she showed it me on the screen. I mean, I looked at it, but obviously it was so minute I didn’t even know, she pointed out where it was and that, but I mean it wouldn’t have meant anything at all to me, but obviously it did to them [laughs].

 

Yep, yep, and did you have to wait long when you got there?

 

No, no, very good.

 

Yeah.

 

I went for a certain time and within five minutes they come down and collected me.

 

Okay.

 

There was no trouble. It all went everything smooth. 

Brian had experienced some chest discomfort in the past but tests had showed nothing was wrong....

When you were told that you had this leaky valve, what were your feelings at that point?

 

Well, at that point I went to the scan thinking that I had nothing at all wrong with me, because previously, only within months before, they did this once before, I had a chest x-ray and I’d also had a scan, you know, whatever they call it [laughs].

 

An ECG or something?

 

It wasn’t an ECG, but it was, they put you on camera - well, it’s similar to a scan, I suppose.

 

Right.

 

A camera and a screen and that. Because at one time I was getting - I don’t know why it was happening - but I could go out and have a meal, and all of a sudden I would get cramps under the ribcage, and I used to have to get up and walk away to get it to move. And I went to the doctor’s about it, and he couldn’t find any reason for it at all, and he sent me for a chest x-ray and also this scan, and it still come back that there was nothing wrong. So I was surprised when they turned round and said I’d got a leaky valve, you know, being as I’d already been for a chest x-ray and a scan previous.

 

Was it frightening?

 

It wasn’t frightening, but it was, you feel as if you’re concerned about it, you know. It don’t make you feel as if you don’t just ignore it or whatever. You know, you’ve got it in the back of your mind that there is something there. 

At his follow up appointment Brian was told he might have a problem with two valves, rather than...

Well, I had a, they put all these things on me again which they did on the first one, but I think it was a more advanced one that they say it goes deeper, probes deeper than what the first one would. And they did say that there, there might have been a small one on the second valve. But it wasn’t, it wasn’t a problem or anything. I said, well at the time I said I thought it was only the, the one valve. But they said they thought there was a small one on the second one. But they say none of them was a problem so I just accepted what they say and that was it.

 

So you went along thinking that you…

 

Yeah.

 

…had one leaky valve…

 

And they told me I might have had two.

 

But as I say, I only had one as far as the first screening said. So...

 

And did they tell you this was a serious problem or did they think it wasn’t something you should be concerned about?

 

They said it was nothing to be concerned about. That was the words they said. “There’s nothing to be concerned about.” So...

 

And did they give you any treatment for it or anything like that?

 

Nothing at all.

 

And did they give you any information about it?

 

Just, only that it was not a problem and that was, you know, I accepted what they say, so I didn’t get any deeper into it really.

 

And so you, you weren’t concerned at all at the thought of something more having been discovered?

 

Not really, no. I mean, obviously if it had, if they had have said there was something more and something had to be done then I would have to think about it seriously more then. But they said there’s no problem with it, so that was what I took for gospel, you know [laughs]. 

Generally Brian feels fit. He is concerned about his heart valve problem and whether it can be...

How do you sort of feel generally about your health? Are you someone who thinks a lot about your health, or is it not something you think about much?

 

Well, obviously I’m concerned if I think I’ve got a problem, but I don’t think of it daily as I’ve got something wrong with me, because I feel quite fit and healthy, really. As I say, I’ve even got a monitor, which I do take occasionally for my diabetes, keep an eye on it myself, and it’s usually normally below the seven mark. So I find that I just have a yearly check-up every, annual check up with the surgery for it.

 

Do you do any other kinds of screening? Have you had the prostate screening or bowel screening?

 

No, no.

 

No, okay. Would you if those were offered?

 

I would think about it, yeah.

 

We were talking a little bit earlier about the problem of screening, and then finding something, and then not knowing what you can do about it. I don’t know if you want to just say a bit about that.

 

Well, obviously, if I had a screening and I found there was a problem, then I would like to take it further, look further into it, see what good things and the bad things are about it. But otherwise that’s as far as I would think, I think, at the moment.

 

And if they find something, but then there’s nothing they can do about it, how would you feel about that?

 

Well, I would feel concerned, but I would have to accept that it was a thing of life, especially at my age. Then you’ve got to think, getting to my age now, you’re going to get these things come along, which probably may concern you, or may not. But I suppose it’s a thing with age, I look at it, in lots of things. 

Looking back Brian is glad he had screening. He recommends it to other people, and says his...

And thinking about the whole experience, right from being called for screening to go through that first appointment to your second, how do you feel about all of that now?

 

I’m glad I’ve done it to be honest because, as I say, it’s, if there’s something wrong it puts my mind at rest, which obviously it, I found that everything was OK as far as I’m concerned. But I think that if it’s being done to look into deeper things for other people then I’m quite willing to try to help. I’m that kind of person. You know, if there’s something that they could find out through checking on other people and it benefits others that’s my philosophy that it should be done I think.

 

And did they tell you that they were going to monitor your two leaky valves now?

 

No. They, as far as they were concerned I’d finished with it all and that’s it. It, I mean, unless you got in touch with me I wouldn’t have known, think any more about it, to be honest. It was something in the past I’ve forgotten all about. 

 

And if somebody came to you who’s about to go through the screening process from the very start, what would you tell them about it?

 

I would advise them to carry on with it and have it done. And I would just tell them what they do, as far as I was concerned and try to put their minds at rest because I’m sure that some people do worry more than what I probably would. And, you know, just try and put their minds straight really. 

 

OK.

 

I mean, I’d advise anybody to follow up on these things because, as I say, I think they should, all these things do good I think. 

 

And what do you think are the most positive things that have come out of this experience for you?

 

Well I suppose in a way the way I think about life makes me think that there’s things that people worry about and I don’t, I suppose. And it’s just, I don’t really know to be, in a way, that’s the way I look at it. I think some people are forced into worrying when sometimes it’s not needed. So I try to look at it that if I’ve been told everything’s, nothing to bother you, you just take their word for it and just carry on as normal. 

 

And have there been any negative things have come out of it for you?

 

Nothing at all as far I can think.