Carolyn - Interview 02

Age at interview: 69

Brief Outline: Carolyn took part in screening for unrecognised heart valve disease in 2009. She was pleased to be told her results were negative, as she had expected.

Background: Carolyn is married with two grown-up children. She is retired, and used to work as an optician's receptionist. Ethnic background/nationality' White English.

More about me...

Carolyn was invited to take part in a new screening programme for previously unrecognised heart valve disease at her local health centre. She agreed to take part. She has been taking medication for high blood pressure for over 20 years now, and feels in good health, but there is a lot of history of heart disease of various sorts in her family so she thought it would be a good way to get checked. Some of her family members have died at a relatively young age from heart attacks or heart failure. Several (including her brother and her own son) were born with a hole in the heart, though none have needed surgery.

 

Carolyn found the appointment very easy and straightforward, and it helped that it was local as she does not drive. She was reassured, but not surprised, to be told her results were normal. She feels the information she was given was mostly good, though perhaps it might have been good to know more about what heart valve disease is before deciding to take part. However, she always feels it is better to know if there is something wrong than try and ignore it.

 

Carolyn thinks it is important to take part in medical research, and has previously taken part in studies of bowel cancer screening and bone density. It is helpful to have healthy volunteers as a control group in many studies. She would be hesitant about taking part in a drug trial if she needed medication but there was a chance she might end up with a placebo. But if it were a trial comparing two different treatments for something she has, such as high blood pressure, she would consider it.

 

Her past experiences of healthcare and communication with doctors have not always been very positive. When she was a teenager, she went to see her GP about a mole on her neck. He cut it off rather abruptly with a pair of scissors and did not seem very concerned that she went home on the bus with blood trickling down her neck onto her blouse. More recently she had a breast lump and had a disagreement with the consultant who wanted to perform a mastectomy even though two biopsies had shown negative results. She argued for a lumpectomy until it could be proven that it was cancer. She remembers him being unhappy that he might have to perform two operations rather than one, and referring to her breast as 'redundant material' because she was too old to need it for breastfeeding. Sometimes she has had to wait a long time for hospital appointments, and thinks things are often planned around the convenience more of staff than patients. However, things have improved, and the heart valve screening experience was very good' convenient, with no waiting time and good communication with the staff.

The local health centre is very good so Carolyn was not surprised to be screened there. It was...

And were you surprised that something like this was happening in your local Health Centre?

 

No, I don’t think so. I mean, it’s not just doctors. It’s a very comprehensive set-up for various departments, so I didn’t sort of think it unusual.

 

If it had said you had to go into town to have the...

 

That would have made a difference because I don’t drive, and it would have meant a long bus or train journey into [city]. I mean, numerically it’s only 11 miles, but in travelling time it’s a couple of hours. And it’s no fun.

 

Do you think you might have done it anyway or?

 

Well, I did, some years ago they were doing a bowel cancer screening, and my husband and I both went by public transport, because there again my grandmother had bowel cancer so I thought it was a good opportunity to get cleared, and everything was fine. But I think it would depend on how serious I thought the condition was. If it was something frivolous then I certainly wouldn’t bother.

 

With this one possibly, with family history, you might have.....

 

Yes, that was definitely a good idea, and as I say, I’ve been on hypertension tablets for 25 years.

 

But having it locally was a bonus?

 

Yes, ideal, yes. 

Carolyn has felt intimidated by male doctors since she was a teenager, and would always prefer to...

I would prefer - I always prefer a female doctor, always. I think because as a teenager I felt intimidated by male doctors, I felt that they regarded teenage girls as idiots, [laughter] and wouldn’t take seriously any reason we went, so.

 

Was that a particular bad, single bad experience, or?

 

It was something like - I can’t remember exactly what happened. Oh yes, I can remember. I had a mole on the back of my neck that was sticking up, and occasionally it bled and made a mess on my school blouse, so I thought, “Go and see my GP”, who I’d known since early childhood. And he said, “Oh, we’ll soon cure that”, and he just literally took a pair of scissors and chopped it off. And it bled and bled and bled. I mean, I didn’t realise it was bleeding because it was behind my neck, but when I was on the bus going home the conductress said – worried, you know - she said, “Has somebody attacked you?” so I said, “No.” She said, “Well, you’re covered in blood down your back”. And I didn’t know it was bleeding like that. And that was his cavalier attitude, “Oh, we’ll just chop it off, stick a plaster over it”, and I thought that was, looking back on it now, I think that was absolutely evil to do that. And that rather destroyed my confidence [laughter] in middle aged male doctors [laughter]. But he just, you know, he just didn’t pay it any attention. These days I’m sure it wouldn’t happen, but for someone who’d known me since I was about five years old I thought that was disgusting.

 

Gosh, you know, it was quite a, quite an incident, really, wasn’t it?

 

Mm.

 

So that’s kind of coloured your whole....

 

Well, it did. I thought, “Once I’m independent I will always seek a lady doctor.” It wasn’t possible when I first came here, there was no female in the practice. But as soon as there was, although my male doctors were always excellent, I thought, “Right, I will keep to the female of the species [laughter].

 

Part B

Going off at a tangent completely, I had - in 1984 - I had a lump in my breast which I hadn’t noticed, because in my ignorance I thought a lump would always protrude, not be within, contained within the breast. So when I found it I went to the doctor, saw the surgeon, consultant, whatever, and it was extremely hard, and it had, he said it had grown very rapidly. He did two biopsies, both of which were negative, and he said, “I still think it’s cancerous. I would like to take your breast off.” And I said, “Well, until you can prove to me that it is cancerous just take the lump out.” “Well, that means I will have to do two operations.” I said, “Well, quite possibly you will, but I’m not willing [laughter] for you to lop it off.” And he said, “But its redundant material. You’re not going to be breast-feeding anymore.” [Laughter]. And I thought, “Lovely, this is what I’ve put up with from male doctors from the age of 15.” 

Carolyn expected to be reassured that her results were normal, but would like to know if there...

So you went along thinking everything would be all right?

 

Everything would be all right – well, I didn’t know if everything would be all right, but I thought it would be good to know if there was a problem, and for reassurance that, you know, everything was healthy. I had no reason to believe it wouldn’t be, but as I say, because parents and grandparents died relatively young from heart problems, I thought it would be a good idea.

 

And the fact that it was medical research, did that have any bearing on your thinking?

 

Definitely. It, because it wasn’t a commercial company I thought it was bona fide research, and not just a gimmick to promote some kind of quack medicine. That’s a pet thing of mine [laughter].

 

Tell me more [laughter]. Have you had those leaflets inviting you to......

 

Oh, to take part, “Come and have a full body check and it will only cost you £40” or whatever, and I think, “No, if they’re going to charge, I’m not interested, no.”

 

And would you trust the results so much if it was a private company?

 

No, I wouldn’t, because I think they want to sell you something.

 

Yes. And the idea of research helping other people rather than you, how much was that a factor?

 

Yes, I think it’s very important, I do. Because unless there’s a control group you’ve got no comparison, so you need to know what the majority of the population is, compared to those that have problems.

Carolyn has taken part in research into bowel screening and might take part in other research as...

Well, I did, some years ago they were doing a bowel cancer screening, and my husband and I both went by public transport, because there again my grandmother had bowel cancer so I thought it was a good opportunity to get cleared, and everything was fine. But I think it would depend on how serious I thought the condition was. If it was something frivolous then I certainly wouldn’t bother.

 

With this one possibly, with family history, you might have.....

 

Yes, that was definitely a good idea, and as I say, I’ve been on hypertension tablets for 25 years.

 

But having it locally was a bonus?

 

Yes, ideal, yes.

 

Was the bowel screening also research?

 

I believe so, yes. It just asked for volunteers.

 

Right, so you actively volunteered for that one, rather than--?

 

Yes, I think we, you know, my husband and I both received the letter and we said, “Yes, we’ll do it”, even though it’s not very pleasant [laughter]. Yes, we did.

 

What’s involved in that one? Was that the one where you have to give a stool sample to...

 

Yes, it was an enema, and then a camera up your backside, [laughter] you know, not very nice at all. But at the same time it was reassuring to know there was no polyps or ulcers or anything else.

 

Part B

R'            It was probably a good ten years ago now. It’s difficult to remember timescales, but it seems a long time ago.

 

Have you ever taken part in any other kinds of medical research?

 

I think I went for a bone density scan at one time, but I think that’s all.

 

Okay. Are there any kinds of medical research you wouldn’t want to get involved in? Because I guess often it’s a balance for people about their benefit, the benefit to others and the risks, possible risks.

 

Yes, mm.

 

What about drug trials for instance?

 

I think if it was a drug that I needed for my own well-being, I’d be rather worried about being given a placebo instead, that sort of thing, but as I say, I certainly wouldn’t want to do anything that was purely cosmetic. But otherwise, yes, I think I’d - yes.

 

Yes, so something maybe that was comparing one blood pressure treatment with another you might be willing to take part?

 

Yes, yes, but as I say at the moment what I’ve been taking has suited me right from the off so I haven’t had any problems.

 

And actually that might make it difficult for you to suddenly say, “Oh yes, I’ll move onto a...

 

Yes, “If it isn’t broken don’t fix it”, yes. 

Carolyn was told on the day everything was fine, which was as she expected. She can't remember...

So getting the results, what did she say to you when she’d finished doing the screening?

 

Oh, she said, “Everything all clear. Nothing to worry about, but you’ll get a printed letter in due course”, which I probably have thrown away, [laughter] because everything was all right, yes.

 

Can you remember much about that letter?

 

Not really, only that it reinforced the fact that there was no problem.

 

How did you feel when she told you that?

 

Completely unsurprised, because I didn’t think there was a problem, but it was reassuring to know that there was nothing that I hadn’t realised could be a problem. Because I’d, you know, symptoms that people say, oh, they’re breathless or they can’t do this or they can’t do that, the only limitations I have are by arthritis, not by what I assume to be a heart problem. 

Carolyn would encourage people to have heart valve screening. It's reassuring if nothing is wrong...

I would say there’s absolutely no need to be apprehensive, it’s in no way uncomfortable, and it’s very reassuring to know either way, if you’re clear or if you do in fact need further investigation. I think it’s always better to know than be one of these people that thinks, “Ignore it and it’ll go away” - because it won’t.

 

What would you feel about something where they told you there was a problem, but there then wasn’t anything they could do about it very much?

 

Well, that’s it, you know. If there’s nothing you can do, there’s nothing you can do.

 

Would you still rather know?

 

Oh yes, yes, because then if there are plans that need to be made you can get on and do it.

 

It’s often one of the problems with screening, that they can pick up problems but then it’s unclear what you should do about it.

 

But then I would say, “Well, if I’ve had this problem possibly since birth and it’s not affecting me so far, why worry?” 

Carolyn was not expecting anything to be wrong so she felt no need to learn more about heart...

Initially I was quite pleased to take part, because I do have a family history of heart disease, so I thought it would be reassuring to have a check-up. I’ve never had any indication that I needed a check-up, but I just thought it was a very good idea to take part.

 

And can you remember what the letter said, what you had to do?

 

Not really, [laughter] no.

 

So you rang the Health Centre?

 

Presumably, yes, to make an appointment, and went accordingly.

 

And did they give you much information about heart valve disease?

 

No. I don’t remember it, anyway.

 

Right. Had you ever come across heart valve disease before?

 

No. No, my only experiences are of relatives dying of a heart attack or heart failure. My own history is that I’ve had high blood pressure that was diagnosed in the mid eighties and I’ve been taking tablets ever since, but never had any adverse effects or complications that needed any further investigation.

 

Would you have liked more information about what heart valve disease is and what the risks are with it?

 

It didn’t really bother me. I just thought, you know, that if it cropped up it would be dealt with, and I don’t anticipate problems [laughter]. I just take everything day by day. 

You want enough information but not too much, which can be confusing. The information from the...

And you were saying a bit earlier before we had the camera rolling about kind of the change in attitude amongst doctors now about what they tell you.

 

Yes, yes.

 

Perhaps you could just say a bit about that?

 

Sometimes I think they probably give you too much information, and you get confused, because you think, “Did they say that, or did they say something else?” [Laughter] It’s, you know, you want enough but not too much.

 

So we’ve moved from a situation where they withheld information--

 

Yes.

 

--to one where.......

 

You’re given unnecessary amounts, sometimes.

 

Did you feel that with the heart valve screening?

 

No, no, I don’t think so.

 

No, so it was about right, the information you had? Yes, okay. Is there anything else that you would want to get across from your experience, or anything you’d want to compliment them on or?

 

No, I’ve no criticism. I think everything went perfectly pleasantly. I wasn’t upset or annoyed or felt something was being kept from me, everything seemed fine. But when you say, I mean as you say heart valve, what is heart valve disease? Is it the same as clogging of an artery, or is it a weak valve or what? A hole in a valve?