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Antenatal Screening

Reasons for not having some or all antenatal screening

Some people decide not to have pregnancy screening because of not wanting to end a pregnancy or be faced with that decision.

One woman said that she had screening in her 4th and 5th pregnancies in order to prepare for any special needs the baby might have, rather than to consider ending the pregnancy.

 

She decided to have no screening except the anomaly scan because she could not contemplate a...

She decided to have no screening except the anomaly scan because she could not contemplate a...

Age at interview: 44
Sex: Female
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My third pregnancy was somewhat of a surprise, in that we thought our family was complete. And I'd actually made an appointment to go and be sterilised and the week I was going to go and do my counselling appointment for that I discovered I was pregnant, which was something of a shock, and not entirely welcome. 

But very, very quickly we adjusted to that, and we were really excited. And we told the children and told the family, which was pretty daft, because it was very early days. And I told the course, because I'd just started training for ministry at that point. 

And then I lost it. I mean quite early on in the pregnancy. And I was completely devastated. I mean, it was really bizarre when I think about it, you know, because we're talking sort of about eleven weeks here. And I was just completely knocked sideways.

It was handled really well by the hospital. I mean, I do have to say that. The nurse doing the scan - I mean we knew something was wrong because there'd been a certain amount of bleeding and I'd gone in and they did a scan. And, you know, very quickly we realised that there was actually nothing left.  

Having lost that child and been so upset by it, you know, it really made us reassess where we were, and we decided actually we did want more children. So I have to say the four children we have are all planned.

So we then went ahead and I became pregnant again. But we felt very, very differently about it now, partly I think because by this stage I had got some friends who'd got, who'd either had problems, you know, significant problems in pregnancy, or we had one friend who actually had a child who'd got a disability and they'd been working with it. 

And also issues about, they'd had to sort of think about what to do and how to do it. I think probably also training for ministry I was thinking a lot more about issues, and I'd come to the conclusion, partly because of how upset I'd been about losing the baby, that I couldn't face a termination, really, whatever happened. 

And so rightly or wrongly, we decided that if we were going to have a problem we didn't want to find out beforehand, we'd face it when it came. Having said that, with both the other two children we did have the anomaly scan. And that was primarily because the advice I had from my GP - and with the next child - my GP was very supportive about this decision, very helpful and, and she was quite happy to live with it. 

And she said, she was encouraging me to have the anomaly scan, because she said if that showed up any sort of physical problems, sometimes it was helpful to know beforehand, and then either things could be done in utero or they could be done immediately at birth. And there was less trauma for the, the child. So it was that sort of thing that we were thinking about.

Whilst most staff supported her decision, the person doing her last anomaly scan was less supportive. She also had concerns about the ethics of choice and society's attitudes to people with disabilities.

 

The person doing her 20-week scan said it was a waste of money if people would not consider...

The person doing her 20-week scan said it was a waste of money if people would not consider...

Age at interview: 44
Sex: Female
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The experience with my last child was very different with the scan, because most of the way through with the hospital appointments, and particularly with one radiologist, it was very negative. 

When I actually had the scan, she couldn't see the whole of the way, whole of the backbone and she said - I mean, just, just because of the way the baby was lying. There was no particular thing about that. But she said with anyone else she would have called them back, but she wasn't going to do that with me because I'd already, you know, I'd made a decision not to have anything, so it would be a waste of time and money, and she wasn't going to do it.  

And I was really upset. My husband was furious. And of course I spent the next few nights just imagining the worst possible scenario and what there could be, and how we were going to handle it, and all that sort of stuff. And in fact I was so upset I didn't even mention it to my midwife for some time, and when I did she absolutely hit the roof, because she said, 'Nobody should be treated like that. It doesn't matter what decision you make. If you make a decision then it's for the hospital and the staff to work within that, not to try and put their judgements onto you.' 

And she was wonderful, and I didn't, I couldn't remember who it was, but she was haring off to go and find out who was on duty at that time, send in I think an official complaint. Because she said that should never have happened. But certainly that was a very different experience to go through. 

And although, I mean, the midwife was, you know, I ought go back and have another scan, and so on. And I didn't, but it mostly it wasn't a problem, but every now and again I just sort, I would sit there and think, 'Oh, well, you know, I wonder if this one's going to be OK, and what we're going to do, how we're going to handle it.' So it gave an extra question mark over the rest of the pregnancy.

 

She feels society is too concerned with perfection. There needs to be more debate about support...

She feels society is too concerned with perfection. There needs to be more debate about support...

Age at interview: 44
Sex: Female
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I don't think I'm so much worried about the amount of information. I'm slightly worried about what I perceive in society, which is the pressure towards perfection. And that's got much more to do with - in all sorts of areas - that, you know, if we start moving towards choice in too many areas - when you start reading in the papers about designer babies and all this sort of thing. 

What does that mean about our attitude towards people who aren't perfect and how are we going to handle that? I mean I suppose as a starting point, I work on the basis on that all of us actually are disabled in one way or another. Some of us have more patience, some of us, you know - in different sorts of ways, there are none of us are actually perfect, and it's something we need to work towards, which is a sort of theological position, really. 

And so working towards physical and mental perfection in children is a sort of worrying subtext at the moment for me. But I don't know about that that's so much about information, although the difficulty is that if there is information there and you can, you can do something about it, then inevitably there is going to come up an element of choice.

So I mean I do recognise that there is a whole moral question about if you have a disabled child, should you expect the State, in the form of the NHS and the education system and so on, to actually bear the burden of that, when you didn't actually need to do that? 

And, you know, it, I can see that this is not as, this is not a straightforward personal option, because it has repercussions, not just on you and your family, but actually the whole of the wider society. And as so often, the actual science that makes the possibility has gone ahead of the real, the ethical debate.

Another couple had decided as Christians that they would not end the pregnancy under any circumstances, and so would not want screening. They also felt that they did not want to know about any disabilities in advance, because it would make them worry during pregnancy, and because of wider concerns about attitudes to disability.

 

She decided not to have any screening because it creates anxiety and as a Christian she would...

She decided not to have any screening because it creates anxiety and as a Christian she would...

Age at interview: 29
Sex: Female
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We chatted it over and he's got a medical background, which I think was significant. And sort of talked through what's the point of screening and what are the implications of having a scan, and also other people that I know who've had scans - especially one lady I knew who'd had a scan and showed Down's Syndrome, and in fact the child was normal. And just the worry that she'd been through, which was in fact unnecessary. And so that was obviously in my mind. 

And then other issues we discussed were, you know, what can you actually do? Because we definitely wouldn't abort, being Christians and believing that this was a person from the moment of conception, would put it, you know - you wouldn't. That's killing life, so we wouldn't, that wouldn't be an option so we thought, well, what's the point if you're not going to abort anyway?  

In that sense, there's no point in knowing and worrying unnecessarily. The other thing was the thing if, you can't know if - I think they give a percentage possibility, at least in some cases, of a possible abnormality, and you think, well, it's not even sure. It's not such a clear yes or no, but the fundamental thing was that we weren't going to abort and we were going to have the pregnancy right through to the end, so why have a scan? That was the fundamental, I guess.

So in the end it was quite a quick decision?

Yeah, it didn't take long. I guess I hadn't really thought it through so we were just sitting down and thinking through the implications and what we believed. It just seemed quite clear.

Did you think at any stage that even if you weren't going to contemplate a termination that it might be useful to know to prepare yourselves if you were going to have a baby with problems?

I guess that is something I did think of, but I guess the other side of it was that I might worry unnecessarily. So in that sense I thought, well, you know, effectively God will give us the child he wants to give us and give us the ability to take care of this child, whatever the case - whether they're normal or they might only live for a few weeks after they're born. 

So, as it were, trusting in that, and also, I guess we live in a country where there are good medical facilities and I felt it was not being irresponsible not having the scan. So, yeah, on balance I felt it was.

 

He did not want screening because as a Christian he feels it undermines people with disabilities...

He did not want screening because as a Christian he feels it undermines people with disabilities...

Age at interview: 29
Sex: Female
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We would rather not have known. Obviously, if it is something like cardiac defect where they might need to do emergency surgery as soon as the baby is born, that's a different situation. 

But that's so rare that we felt that, weighing that up with basically not wanting to know if there was something wrong - because I think, psychologically, there's a big difference between having a baby in front of you who's just been born and then discovering that that child has Down's syndrome or something, that obviously no-one would want their child to have - but that's very different from discovering that through some screening.  

And I think, psychologically, it's much easier to cope with if you actually have the child there in front of you, than if it's an anonymous person that you've never actually seen. And I think that there's probably been a tendency, as a result of screening to effectively undermine people with disabilities. 

Because, you know, if the majority of screening is for people with disability and then the option is offered to parents, 'Do you want to go for an abortion?' You know, it's not, what's that saying to those who do have Down's syndrome or those who do have other abnormalities? I think that people need to be valued and a phrase that my wife and I have often used is that, you know, the baby God gives to us is the baby that we'll look after, and if that's the child with whatever, we'll still love and care for that child.

They did end up, however, having a late scan for dating purposes, and were told the baby had a minor kidney problem, despite having asked not to be told if there was anything wrong. This had made them worry for a while and reinforced their view that another time they would prefer not to have a scan. This couple felt parents should be more fully informed about the purpose of screening.

 

He feels people should be more fully informed about the purpose of screening and that it could...

He feels people should be more fully informed about the purpose of screening and that it could...

Age at interview: 29
Sex: Female
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What would you say to other parents thinking now about whether or not to go for screening? What would you say they should be considering?

Father' I personally think that it would be far better to spend the money that's spent on screening and spend that actually on supporting parents who do have children who have whatever condition. And, in that sense, I would encourage parents to think in those terms. 

Because, you know, it might just be a drop in the ocean, one person not having all these screening tests, but if a lot more people thought about it rather than just going down this bandwagon - and to be honest, I think that, you know, it is the expectation and I think that the medical profession shouldn't portray it in that way.

I think they should say, 'Look, do you realise that really the main indication for having this particular screening, this ultrasound, is to look for an abnormality? the only treatment for that (in quotes) would be a termination.' I think if people understood that more and also understood the potential worry that it can cause, you know, if there's, 'Well, there's a 50% chance that your child could have this,' and then all the weeks of worry.

Whereas, you know, I think pregnancy should be a happy time, rather than a worrying time. So I would urge parents not to be pressurised into having any screening. Obviously if heart defects or whatever are in the family, that's quite a different situation, but that's such a small, tiny fraction of those that, you know, that isn't really the indication for any screening.

Okay, and messages for health professionals you were sort of wrapping up in that, really, but I mean, is there anything else you would say to health professionals about how they should inform people?

Father' Most people going for a scan, I imagine, are going thinking, 'I'll come away reassured.' Those who are told that there's something wrong are going to come away just very anxious and worried. 

And I can remember, for example, when as a group of 100 medical students, we all had our cholesterol level taken and the person who was giving the lecture - and then we were going to go off and have ours done and it was all part of just teaching on cholesterol levels and so on - I thought he did it very well because he said, 'Statistically, one of you in this room should have, will have a very elevated level of cholesterol.' And that brought it home that, actually, this wasn't just something you go in and swing into and swing out of, but you could come away with some serious news.

Now, obviously cholesterol screening is a completely different thing and very useful, because then you can actually do something about it. But I think if health professionals said to any mother-to-be, 'Do you realise - or if you have this it may well be - or there's a 1% chance, 2% chance, whatever the percentage is, that you'll come away very worried?' I think that ought to be said.

Other couples turned down screening because they would not end the pregnancy, regardless of the results. One couple felt sure they would not have wanted any further tests and would rather not worry for the rest of the pregnancy. In any case, screening could not show how severe the baby's condition might be. They felt that screening was not very accurate and could make them worry when in fact the baby was fine.

 

She did not want screening because she would not have further tests, and would rather not worry...

She did not want screening because she would not have further tests, and would rather not worry...

Age at interview: 36
Sex: Female
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Both working in the Health Service we kind of decided that you're aware of tests and things being done and actually the pointlessness of it, sometimes, if you're not going to act on the results. And that was the main, my main sort of reason for not having them really, or our reason for not having them, was that we'd probably, we wouldn't do anything with the results if we did find there was something wrong. 

And so it just seemed that it would cause extra stress. And we'd both worked with people with, adults and children with mainly Down's, and just realised there was such a spectrum, a broad spectrum of problems that can be associated with it that it just isn't such a simple decision as the baby's got Down's or, you know, any other problem. 

And it, I guess we both thought screening could only tell you so much and it wouldn't have been enough for us to make a decision to terminate, particularly at the point where if we'd found out there was something wrong. 

By that point I guess it would have been, for me, fairly late on, you know, sort of twelve, thirteen weeks, I guess if you're looking at amniocentesis and that sort of thing, or later. And that would have been just a bit too late for - you know, you're kind of feeling very pregnant and even coming to the point where you know, a bit later that you're feeling the baby move around.

So if there were a screening test that, say, could pick up problems at six weeks, would you feel differently about that?

Possibly. I think it would have altered our decision in a way, being as neither of us have sort of religious or moral objections to termination. But having said that, the longer it gets on in a planned pregnancy then yes, I would feel a lot less comfortable with it. 

So if you'd known at six weeks it may have influenced our decision. But having said that, even then, another reason for us not wanting screening was just to want to have, to go through pregnancy feeling and enjoying it, and not feeling that there may be something wrong and not fully knowing it. I don't know, it's just me.

 

Screening cannot give you definite information and having further tests would mean more anxiety.

Screening cannot give you definite information and having further tests would mean more anxiety.

Age at interview: 36
Sex: Female
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Mother' I think at twelve weeks if you have a scan and they say 'Oh, it's possibly something wrong', I don't know how - again you're not, you're not getting a definitive 'Yes, there is this; yes, there isn't.' It's further tests. Whereas it's kind of taken out of your hands to some degree by twenty weeks. Although I'm sure there's still abnormalities found at that point and people make a decision to terminate by then.

Father' In fact in a way that's what led us really, that's really moved the discussion on, I think, for [son] and for bump number two, was that it was the percentage indication of how accurate the test was. And I think, well, you'd sort of have an indication that the test may be positive for anomalies, which means another test. 

And it was like, well - and then it was from then we were saying, 'Oh well, if that's testing that, and you've got to have another test, and the worry of waiting between tests.' And then we'd say, 'Well' - then we got on to, 'Well, what would we do if the test was positive anyway and was one hundred percent correct. Would it change anything?' And then we sort of talked about it and from there really said, 'Well, no.' And so what's the point in having the first test, which is not hugely accurate, to then wait and have another test, particularly given our ages.

Sometimes people's willingness to have screening depended on the condition being screened for. For example, one woman declined screening for Down's syndrome because she would not consider ending the pregnancy for that condition. She would not take the risk of amniocentesis to get a definite diagnosis. She felt differently about neural tube problems, because her family had a history of such problems.

 

She did not want to know if her baby had Down's syndrome but wanted to know about neural tube...

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She did not want to know if her baby had Down's syndrome but wanted to know about neural tube...

Age at interview: 29
Sex: Female
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I mean I think that's something that people think about very differently. From my point of view, I knew that I wouldn't, if I knew I was having a baby with Down's syndrome I would not have a termination and given that, why know? 

Now for some people they'd still want to know, they'd still want the information, but to get that information you have to have an amnio, and an amnio carries, you know, on a good day a one percent risk of miscarriage and I don't think I'd take that risk.  

So given that I wouldn't actually know, the only information I'd have would be a high risk, and what is the point in that, you know? Even a risk of one in ten, actually the overwhelming probability is you're not going to be affected by it so why, so I just decided I didn't want the information at all. And maybe if I'd been much older I would've felt diff-, you know, maybe if the baseline risk had been much higher, you know, if I'd been thirty, thirty nine not twenty nine would I have differently about that, if I felt the risk was high? 

I think I probably wouldn't have, because I would still feel the same about having a baby with Down's syndrome but I felt that I was quite clear about how I wouldn't follow the steps through and therefore there was no point in knowing the risk information. Because that's what it is you know, it's a risk. It doesn't give you any answers, and I wouldn't have taken the next step I felt to get more answers. 

Whereas for other things, certainly my husband felt diff-, you know. If, when we were, with the first, you know, in my first pregnancy when we were talking right at the beg-, you know, was there a big risk of a serious neural tube defect, and his attitude was, 'What, well what does that mean?' And, you know, ultimately the very worst thing it means is anencephaly. 

Well, the answer is I would've had a termination, that's not compatible with, you know, I wouldn't have carried on with the pregnancy with a baby that, you know, was never, ever going to live any time at all. So that was a very clear decision in the other direction.
 

Some people turned down screening because they thought there was a low chance of their baby having a health condition. A young woman who later ended the pregnancy when her baby was found to have spina bifida had decided not to have the triple test (blood test), mainly because she knew she was at low-risk for Down's syndrome and had not really thought about it as a test for spina bifida. The triple test (blood test) is now no longer offered as a screening test and the quadruple test does not give a risk assessment for neural tube defects. Spina bifida is now more commonly diagnosed during the ultrasound scan carried out around week 12 of the pregnancy or, more likely, during the anomaly scan carried out around weeks 18 to 21.

 

She decided not to have the triple test in her first pregnancy because she thought she was too...

She decided not to have the triple test in her first pregnancy because she thought she was too...

Age at interview: 26
Sex: Female
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She went through it briefly. “Have you thought about the triple test? I'll explain a little about it”. So she explained a little bit about - I'd read about it in pregnancy books, and I don't think it were naivety, I just think, oh, I thought, “Oh, I'm young, I'm only 26”. 

And the only main problem that I'd ever encountered were people with Down's syndrome, which I thought, “Well, it doesn't happen to young people. Old people have problems with, older women, older ladies have problems with Down's syndrome”.  

So I never thought, I just never thought about the test. And also I knew that with spina bifida you still have to have a scan - whether the test came back high for spina bifida, that it weren't till later on they could find out the severity of it, so I didn't want to put myself through the anxiousness of waiting for results and still having to go later on to find out we'd have to have a scan anyway.

And did you discuss that together? I guess you didn't actually because it was sort of thrown at you at this?

We'd talked about it a little bit before. He wanted me to have a blood test, a triple test and I just sort of convinced him there was no reason for me to because I was young and because like I said, you know, I'd still have to wait for a scan for things like spina bifida or any other congenital problems, that I'd sort of convinced him that it were all right, that everything would be all right.

And did you ever get as far as saying, “Well if we did any of these tests and we got a result, what would we do with that information?”

We'd never, no, we'd never really talked about things like that. After talking to other parents, a lot of them talk, you know, talk about these things, and we'd never really, I don't think it's entered us heads that us baby would be disabled or anything. We never even thought, so we never really had a big discussion about disabilities or defects or anything like that.

Similarly, another woman found at her 20-week scan that her baby had anencephaly (the brain had not developed), and eventually decided to end the pregnancy. She had not had the triple test partly because she was young and partly because she thought she would never consider ending a pregnancy. She had not realised that the triple test looks for neural tube problems as well as Down's syndrome. (See also 'Blood test screening').

Several people noted that blood tests are clearly seen as screening tests, whereas scans may not be the seen in the same light. A woman who had ended a pregnancy after a diagnosis of Down's syndrome described the reactions of a friend who said she would never have screening but had in fact had scans.

 

A friend said she would never have screening to look for problems but had in fact had scans.

A friend said she would never have screening to look for problems but had in fact had scans.

Age at interview: 36
Sex: Female
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I felt generally I was treated better by women who had experienced problems - not necessarily the same problems as me, but perhaps who had experienced miscarriage or some similar issue, or perhaps who'd had a scan result or a blood test result that showed up a potential anomaly. And perhaps they, nothing had come of it, but they'd had to think through what if there is a problem? So they tended to be more empathetic. 

I did have one or two friends who had had children and I therefore wrongly assumed that they would be empathetic and they weren't. I had one or two - one friend in particular, who I remember saying, 'I couldn't do what you did. I couldn't take that decision.' We've, you know, she has three normal, healthy children, so she's never had to make that decision, but she said to me, 'I would never allow myself to have antenatal screening to look for a problem. I've always believed that you should take what God gives you and make the best of it.' 

And I was flabbergasted, actually. I was absolutely flabbergasted. And I said, 'Well, did you not have any scans in pregnancy?' And she said, 'Oh yes, I had scans.' And I said, 'Well, that's what I had. I didn't volunteer to have anything different from what anybody else had.' 

And I guess at that time I was still justifying to myself the decision I'd made, whereas now I think I'd perhaps be much more assertive, and much more challenging to her assumptions. I've never actually forgiven her for that, and one day I have promised myself I will tell her.
 

Another couple who had declined most screening but had a 20-week scan explained why they saw it as different, partly because by then they felt it would be too late to have a termination.

 

They explained why they had the anomaly scan but not blood tests and why they felt differently...

They explained why they had the anomaly scan but not blood tests and why they felt differently...

Age at interview: 36
Sex: Female
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Father' I don't know. I mean - certainly, I mean, from what I remember we discussed it and we didn't just discuss the test. I mean I think for both of us the point of it is not the test itself. It's what the test, what you're hoping to find out, really. And I guess we both felt that if it found abnormalities, anomalies, what would we do about it anyway?

And we came to the conclusion, I think separately, and we - luckily I suppose - agreed that, well, we wouldn't do anything, and would take it as it comes. And also in my mind, a blood test, even though it's simpler than a scan, is more invasive in a way, really, and seems to - I guess so I associate the scan with just a routine check, and you can see the baby and everything. In a way it seems less of an, a sort of purposeful investigation, whereas the blood test, you know, is a deliberate, 'Let's find out if the baby has Down's'.

Mother' I guess also it's taken out of your hands to a degree by - well for - I suppose it isn't for some people - but even more so for us by twenty weeks, in that you think by that point I certainly wouldn't have considered doing anything about any abnormality that was found. But yes it is, I guess you're more, there seemed to be more of a choice sort of surrounding blood tests or other tests that you may have chosen to have. 

Whereas the twenty-week scan, I don't think I was ever, you know, made to have it or, you know, it wasn't sort of 'This is where we go next'. It was, it just, certainly the first time, seemed more of a routine part of pregnancy. And then because I had to have a scan later on I just felt, oh, it was helpful to have a baseline from which to see if there was any change at all. 

And certainly this time round it was helpful in that I've had to have a scan because they were worried about growth retardation and so it was quite helpful to know that we were still going along the same path, that the baby was the same size in terms of weeks as it had been when I'd first, first been scanned.

Father' I think in my mind, the scan, the twenty-week scan was sort of a routine thing like your first, your sort of booking appointment with the midwife. It just seemed, you know, just something you did, whereas the blood tests and everything seemed more than that. It did seem more, you know, investigative, and there's no reason why that is, but I think that's just what was in my mind - that, you know, you're pregnant, go and see the GP, book in with the midwife, scan.

Some people had considered not having any screening but in the end decided they would. One woman described her and her husband's different thoughts.

 

She thought about not having screening, but her husband was in favour of having every test...

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She thought about not having screening, but her husband was in favour of having every test...

Age at interview: 33
Sex: Female
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And you said earlier that you thought it was unlikely that even if the AFP results came back suggesting there was a raised risk that it would affect your decision?

Yeah.  

So did you think about not having the AFP in that case?

I did actually. But then, I think, more - not more for my husband's peace of mind - but, you know, his opinion was that we should be, you know, I should be screened for everything and, you know, if it's part of the routine screening then just, you know, have it done. 

But I did actually think, you know, as far as I'm aware at this point - I mean, I don't know if something does change that I'll, we'll think differently - but I did think, you know, is there actually any point in having it done?....He's completely non-medical'.His father died when he was 8 of a cardiac arrest, so he has been screened for heart disease.

So I think that probably has influenced the way that he approaches healthcare himself. That he feels that if it's on offer, you know, you should have it done and that was more the thinking than the actual outcome of what the screening was for. I'm not suggesting that he didn't understand what the screening was for but, you know, 'Well, if they do it as routine, then you should have it done.' But I never actually voiced to him that I was thinking about not having it done.

Last reviewed July 2017.

Last updated June 2014.

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