Norman - Interview 01

Age at interview: 77

Brief Outline: Norman took part in screening for unrecognised heart valve disease. He already knew he had some heart problems, and the screening confirmed he had a leaky valve. He was invited to attend a further appointment. We spoke to Norman twice, once after each appointment.

Background: Norman is a retired market researcher. He is married with three grown-up children. Ethnic background' White British.

More about me...

Norman was interviewed twice over the course of this study. The first interview took place after he had been invited for screening for unrecognised heart valve disease in 2009. He already knew he had some heart problems; 15 years ago he had an ECG after experiencing some chest pain which suggested there was some muscle loss in his heart. Then in 2007 on holiday in Spain he had further chest pains, and was admitted to hospital to have stents fitted (small tubes used to open a blocked artery). He has been fine since, but back in the UK his GP arranged for him to have an ultrasound scan which showed a slightly leaky valve, but nothing which required treatment.

 

When the letter inviting him for heart valve screening arrived, Norman felt it would be good to be involved in a study where he might learn more about his heart problems and have access to specialist care if anything was found. So he rang to say he would be happy to take part. The first appointment at a local health centre involved some questions to check he was eligible for the study, and it was agreed that having stents did not make any difference.

 

The results came in a letter and confirmed that he has a leaky heart valve, so he was offered another appointment. Because he already knew he had some valve problems this was not a great surprise or shock, and he was pleased to know he would be followed up.

 

Norman was interviewed for a second time after he had been invited to attend his second appointment, which he estimated took place approximately six months after the initial one. He could not remember precisely what happened when he attended because he had recently been for various scans for other things and can ‘get one confused with another’. As far as he is aware, he was not diagnosed with any further heart valve conditions and was not offered any treatment. He said, ‘I think the condition is regarded as reasonably innocuous and not life threatening, so I’m quite relaxed about it’.

 

Mostly Norman feels he has been well informed and the care and communication with staff has been very good. However, the letter with the results he received after his first appointment was quite difficult to understand, as it contained a lot of medical detail and complex terms. Seeing someone face-to-face to discuss results might be more reassuring. He would also have liked a clearer explanation of what the benefits to him might be of taking part, particularly a reassurance that appropriate treatment would be offered if any problems were found. He is a great believer in seeking help early on for any health problems, and feels taking part in a study such as this is a good way of finding out more about your health and contributing to medical research. He would be very interested in receiving some feedback on the findings of the research project. 

Norman recalls getting an information pack with the letter, explaining that some people who were screened would be found to have a valve problem and they'd be invited for a further scan.

Let’s go through the actual process and starting with how you were invited and what information you were given. What happened? Your GP asked you?

 

Yes. And I said, “Yes, I’d be happy to take part in the study.” And then I had an information pack about what the study was going to be, that it was a two-stage process, and that one in ten people, having had the first scan, if they’d been shown to have a valve problem, would be invited back for a further scan a few months later. And I’m due to go back in January.

 

And was it by letter or face to face? How were you invited?

 

Now hold on. I suppose, yes - the first time I received a letter with an information pack, which I could have completed a form and returned, but in fact I rang them up and said I was happy to take part. And then I went down to the, the local health centre for the first chat.

 

Norman felt the researchers communicated well with him at all stages, and it was clear he could stop taking part at any time if he wanted.

No, I think all down the line it’s, I think it’s very well done. There seems to be a great deal of trouble taken over keeping you informed, communicating, letting you know what the stages are, letting you know that you can drop out at any time. No, I think it’s been very well thought out.

Norman did not remember the leaflet saying much about what would happen if a heart valve problem was diagnosed. It might have been better to make it more obvious near the beginning of the leaflet that it would be treated if necessary.

There’s a reference to whether early detection may improve the care pathways. But the thing that I need to ask a little more about is, “The secondary purpose is to study what happens to any abnormality of the heart valves over the long term.” And my concern is that [laughs] I don’t want to find out what happens over the long term. I want to feel confident that if anything is found it will be dealt, with rather than studied [laughs]. And I’m quite sure that is the case, that if anything untoward is found I will be channelled into some sort of treatment. But I would feel a little, a little nervous if the exercise was, “Having seen this, let’s see how bad it gets, [laughs] before he pops off the perch.” 

 

I mean I suppose you, I suppose you could argue that pretty early on in a three- or four-page document it might be worth stating very simply, “The benefit to you of taking part will be that if we find anything untoward we will be able to direct you in the right way.” I mean, if that’s stated simply up front, that’s a great encouragement. The fact that it’s on, you know, fairly well down on page 2 means I didn’t take it in.

 

Medical research is important so we can learn how to treat different conditions better. But Norman took part also to learn more about his own health, especially as he has had heart problems before.

 I felt quite happy. I felt well informed and I didn’t feel uncomfortable about the idea. In fact I’m all in favour of taking part in studies, because I’ll probably learn more about myself and what my problems are and what, what I might be able to do about it, what the Health Service could do for me, than by being outside. So every time a study comes up I say, “Yes, please.”

 

Well, I mean there’s, obviously there’s a wider community interest, in that the more we know about a variety of conditions and what the outcomes are from various treatments the better. And so it’s, you could say it’s partly altruistic. I’m happy to be part of a club. But it’s also rather selfish, I suppose. I’m very happy to have people taking an interest in me.

 

Particularly as you already knew that you had some heart problems?

 

Yes.

 

Norman had previously been in a study in which researchers measured his aorta (the main artery from the heart). He is no longer in the study because his aorta measurement is now over the cut-off point for the study, but he is being monitored carefully.

Have you been involved in other research programmes in the past?

 

Yes, I have, in an aorta study. I took part in that over a period of two or three years, until I was, became - I was on the borderline of the study with a 3 centimetre, no, a 3.5 centimetre aorta at the time was at the limit of the study. And I’m still, I’m still awaiting a further check on that, because my aorta is now 4 centimetres. [After the interview, Norman clarified that he thinks its 4.5cm].

 

So were you, you were excluded from that study because you were, it was too big or too small?

 

Well, I think at the end of the first stage of that study, I think I was then above the line that they wanted to pursue. I don’t understand it completely.

 

No, no. Would you have liked to know more about why you were not able to continue?

 

No, I mean I was, I was happy that the study was focused in a particular way, and I was just outside that boundary at that point.

 

So how is that being followed up now?

 

Well, I’m due to go for another, I don’t know whether it’s an ultra scan, or - around next March, I think, just to check whether there’s any further change.

 

And is that the worry about an aneurysm or something like that?

 

Well, I mean that’s obviously a concern. And I’d rather have a bit of plastic put in before [laughs] I had an aneurysm than find I’ve got a 20 percent chance of survival if I have one. 

There was lots of detailed information in the results letter but it was not clear to Norman what it all meant. More help in interpreting and understanding it might have helped.

But I must say looking at the details that I got, I mean [laughs] it’s very, very detailed. [Looking at letter] And to be perfectly honest I haven’t the remotest idea what the numbers mean.

 

Do you think it might have been helpful to have a, a more detailed explanation of what --

 

Not more detailed [laughs].

 

No [laughs].

 

No, I mean, no, there’s no shortage of detail here.

 

But it’s the explanation that’s lacking. What do these mean?

 

Yes, I mean a set of numbers occupying that much of a page to a layman means nothing. But the findings are summarised. So I suppose to be fair, this simply backs up some very simple statements. Left atrium, “The left atrium is mildly dilated.” Well, that’s a statement. I don’t know whether that’s good or bad. Presumably one shouldn’t have too much dilation, otherwise nothing gets through [laughs]. But, “The aortic valve blah, blah, blah appears structurally normal.” Yes, I mean there’s some information here which I suppose if I got onto Google I might be able to find out more about what it meant. So I’m not short of information. And there is a conclusion, “The EF”, whatever that is, “is at the lower end of normal range.” That sounds promising [laughs].

 

Does that make you think maybe something, some sort of paragraph to help you interpret that would have been helpful?

 

I think so. I mean, the findings are stated in some detail. There is a conclusion. But I guess you’re right. I think… I think the difficulty must be that if you simplify something or oversimplify it, you can either - you can mislead. I mean this is a - for those in the know - this is a very precise document. For the layman, it’s not particularly helpful. But I suppose the thing is it, it’s much better to be talking with somebody than to have a letter. If you have a letter saying, “We are very concerned about this condition, blah, blah, blah” then, you know, you’re likely to worry and you immediately want to talk with somebody. So I suppose there is a limit to how much, how much simpler you could offer a conclusion. 

The follow up appointment was very efficient and similar to the first one. Anthony and Pamela found it interesting and enjoyable. The condition does not affect him and he was reassured it was nothing to worry about.

And can you remember what exactly happened at the appointment?

 

I can’t remember precisely but I, because I’ve been for other scans for other things and I get one confused with another. But the thing that impresses me is how well organised everything is now. And the appointments are normally very much on time and one’s very well looked after. You’re normally given an explanation of what’s going to happen and the whole thing is very satisfactory.

 

And were you given another diagnosis at that follow up appointment or did they not find anything new?

 

I don’t recall anything new.

 

OK. So you just have one leaky heart valve?

 

As far as I know…

 

OK [laughs]... so were you offered any treatment?

 

No. I think that the condition is regarded as reasonably innocuous and not life threatening, so I’m quite relaxed about it.

 

OK.

 

Although I’m glad to be under survey so that if anything does change I might be, be alerted very quickly, which is always a good thing.

 

OK. And so you didn’t, the fact that you weren’t offered treatment was that sort of reassuring because it meant it wasn’t serious?

 

Yes. I’m all for lots of people who are keeping a close eye on me.

 

OK.

 

On the principle that the sooner something is discovered the more likely you are to have it remedied with a satisfactory outcome.

 

OK. And were you given any information about your heart valve?

 

I don’t recall it. No, I’m simply aware from the first time it was mentioned that it is a not unusual condition. And the particular condition I have is not that serious.

 

OK

 

I haven’t been aware of any change in that situation.

 

OK. And do you think there’s any information that you would have liked to have had?

 

I can’t think of any.  

Norman would rather know about any health problem and have it monitored, but some people might find it really worrying, especially if there is no treatment available.

And just thinking back on your whole experience of being involved in this screening project, how do you feel about it?

 

Well, quite positive. I mean I, let me think carefully about it. I’ve always been very ready to be a participant in any investigation which is centred on me. I [laughs] I like the idea that people are taking an interest in me, but particularly, I think, in health. If a condition you have is being monitored that’s all to the good. So fine.

 

And can you think about any negative things that have come out of your experience?

 

I can’t. No, I think it may be that, you know, if you have a more serious condition then it’s possible that having your attention drawn to damaging changes or a downward slope might be worrying. But I’m in the happy position where conditions that I have been well treated. For example, when I had a couple of stents put in three years ago, I mean that cracked a problem and so that’s quite positive. But, I can imagine that for, for some people you might finish up with a worrying situation. I mean, if you told me that... Well the joke I like is when you say to the doctor, “How long have I got?” And he says, “Well, don’t buy any long-playing records”. 

 

[Laughs] OK. So being involved in this hasn’t made you worried in any way? So having a focus on the fact that you might have a problem with your heart hasn’t worried you because it hasn’t been too serious?

 

No, not at all. No.

 

Norman's GP thinks screening for prostate cancer is a bad idea, but Norman thinks it's a useful way to monitor if your condition is changing.

Have you had PSA testing?

 

Yes, I asked for that. My GP thinks it’s a bad idea, because it, because it’s, you know, there are a lot of negatives that are wrong and a lot of positives that don’t matter. My attitude is simply that PSA, although it may be a crude test, it seems to me if every couple of years you do a check on whether there’s been any change, it’s monitoring the change rather than an absolute figure, which is helpful. And having, I’ve now five or six friends who have prostate cancer and who’ve had various treatments, all very successful, and I’m all for early treatment if I have a problem.

 

Norman says it's painless taking part and may help you, and you can always drop out if you change your mind. The researchers have worked hard to keep him informed.

At the moment, if somebody else got this invitation through the post, what would you say to them?

 

Well, I would say if you’re invited to be part of a study, have a go. It’s painless, and you may learn something about yourself which is important - on the basis that if you have any problems, the sooner they get sorted out the better. So I would highly recommend it.

 

And is there anything that you’d want to say to any of the health professionals who’ve been involved either at the screening clinic or your GP about the way it’s all been handled? I mean that can be, you know, things that you think were done well as well as things that you think could be improved.

 

No, I think all down the line it’s, I think it’s very well done. There seems to be a great deal of trouble taken over keeping you informed, communicating, letting you know what the stages are, letting you know that you can drop out at any time. No, I think it’s been very well thought out.