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Antenatal Screening

Information for making decisions about antenatal screening

Many people we talked to felt strongly about the need for clear, timely information to help make decisions about pregnancy screening. Some really appreciated the way healthcare staff had explained the purpose of screening and what tests they could have.

 

Her midwife's discussion of screening and possible consequences was excellent.

Her midwife's discussion of screening and possible consequences was excellent.

Age at interview: 32
Sex: Female
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My midwife was excellent in the way that she presented the information and she, I think, I felt that she respected my ability to make my own decisions very much, and the way that she presented it was not in bald terms as you've outlined. 

The meaning was clear, in terms of, you know, she did ask me about, you know, my feelings around the implications of finding out any results and I think she also asked me, I'm fairly sure she asked me whether we had discussed it as a couple or not. 

And I remember in the notes she recorded that she had discussed the screening options with me and that I was fully aware of all the implications and the avenues after that. And I was sort of, I was quite interested that she put that as a sort of conversation that we'd had. But I didn't feel at any stage that there was any value-based judgements being made by her.

All pregnant women should be given by their midwife or GP the booklet ‘Screening tests for you and your baby’ by Public Health England which gives detailed information about the types of scan offered and what they are looking for.

Many people found leaflets and written pregnancy guides useful and informative, but some would have liked more face-to-face discussion as well.

 

Even though her background meant she was well informed about healthcare, she would have liked...

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Even though her background meant she was well informed about healthcare, she would have liked...

Age at interview: 33
Sex: Female
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What kind of discussions did you have with the GP at that first visit? This was very soon after the test?

Yeah, this was about 7, 8 weeks, and we just discussed the booking-in clinic, and I'd actually taken a urine sample along, so she said that she was going to send that off for testing, but usually, you know, they were quite happy just with the home test. 

And she gave me, they gave us this 'Ready, Steady, Baby' book which is given out to, which I'm sure is very useful to people who don't have any idea at all. And just how the antenatal care would work, because my GP surgery does shared care, so that I would be having appointments with the GP and the midwife sort of intermittently.

And did you have any discussions at that stage about screening?

She gave me a lot of stuff to take away, leaflets about screening for Down's and some of the other congenital disorders. To be honest, I think there was a sort of, a perception that because of my background, that I would have quite a lot of knowledge about it.

How do you feel about that?

To a certain extent I think it's, you know, that is probably true, but on the other hand it's quite nice to actually have somebody go through things with you, because I think there's - particularly the first time - there's things that you probably don't think about at all. Certainly the screening for all the sexually transmitted diseases, although I knew that that happened, you know, that was a bit of a, 'Oh God, am I being screened for syphilis and HIV and things?'

This could be true even for people whose background meant they knew a lot about healthcare. This woman also described the confusion over a sample bottle for cystic fibrosis in her pregnancy pack.

 

Her pregnancy pack included a sample container for cystic fibrosis screening, but did not explain...

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Her pregnancy pack included a sample container for cystic fibrosis screening, but did not explain...

Age at interview: 33
Sex: Female
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I got a pack sent out. And in the pack there was a universal container, which I presumed, wrongly, was for a urine sample, but it was actually for a saliva sample for cystic fibrosis. But there was nothing in the pack that told you that that was what it was for, so I thought I was being very helpful taking it along with a urine sample in it.

To the booking visit?

Yeah.

And did they then take a saliva sample instead?

Yeah. But they actually, the midwife asked us if, you know, we wanted to be tested for cystic fibrosis.

And you opted to be?

Yeah.

One woman described a good example of how her midwife took her through the written leaflets she received in her current pregnancy. Another read the leaflets avidly, but found she still had unanswered questions, and turned to her friends and family for advice. One woman took a while to get to grips with all the leaflets. She argued most people could understand issues such as the distinction between screening and diagnosis provided they were properly explained.

 

The written information was better in her current pregnancy than her first and the midwife...

The written information was better in her current pregnancy than her first and the midwife...

Age at interview: 43
Sex: Female
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Yes, I mean I think, when I went for the scans this time, when I was pregnant this time, the information that we got sent before the scan actually was very good at telling you that. It said, you know, 'This is a serious, it's a serious medical proce-' - you know, not in those kind of words, but it was a serious medical procedure, that it wasn't there just for, there was a lot of things that could be found out and it wasn't always good news.  

And that was in the information that we were sent. And it was really good that that was included in the information. And it said things like, 'If you have other children it may be a good idea to have somebody else looking after, don't bring your children with you because it could be that you get bad news and do you want your children there?' 

And I felt that that was very positive that they dealt with it like that. I thought it was really helpful, really helpful information, very clear and actually my experience of finding I was pregnant that time and, and the first time was poles apart in terms of the kind of level of support and information I got.

So you had a session with the midwife?

So I had a session with the midwife. Now that might been because I'd had the early scan, so I knew at eight weeks that the baby was OK at that stage, but I saw the midwife immediately after I'd had that first, very early scan and she was...

Was that their, that was their invitation?

No, I made an appointment to go to the, to our GP and I saw the midwife then, and she was brilliant and just spent absolutely ages with me, going through a whole pack of information about all of the different options that, all of the different tests that would happen, what the processes were, getting information about me and medical history. 

It was much more what I thought my experience was going to be the first time. So it included information about where you could get the nuchal fold scan in that information.

 

Written information from her midwife was helpful, but she still had unanswered questions.

Written information from her midwife was helpful, but she still had unanswered questions.

Age at interview: 28
Sex: Female
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Do you wish that you'd had more contact with health care staff during that first period?

Yes, probably it would have made it a bit easier and less difficult question-wise, because I was just having so many questions so when the midwife gave me all these leaflets and this book about pregnancy was a relief. So I read it straight away. I read the whole thing. 

And then I had too many things in my head, but yeah, I think it would have been better. So I was constantly calling my friends who had babies, my mother, asking for, you know, even really silly questions. Like late at night I was calling my Mum and waking her up to ask, 'Oh, I felt something down below, do you think that it's important that I go to see the doctor or what should I do?' So yeah, probably it would have been a bit better.

 

Written information can seem overwhelming, but people can understand the difference between...

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Written information can seem overwhelming, but people can understand the difference between...

Age at interview: 33
Sex: Female
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Do you think most people appreciate that distinction between screening and diagnosis? Is it clear in the information that you're given?

I don't think, I mean one of the things I remember is that when I went to the GP I got huge numbers of leaflets, and I actually, I also think I got them from the midwife. And I remember kind of sitting with this kind of plastic bag of leaflets, thinking, 'Where do I start with this?' And I think it was a little bit hard to get my head round all of that. 

And I suspect in that it's not as clear as it could be, although it was pretty clear once you started sort of sitting down and focusing on it. I mean, I know there's a kind of argument to say that, you know, people can't understand this difference, and I think they can as long as it's made very clear.

Several people commented that their understanding of what all the different blood tests were for was vague - see also 'Blood test screening'. More people felt more confident that they understood what the scans were for, although here too people said with hindsight that they had not always appreciated how serious it could be.

 

It was not always clear what different blood tests were for, but it matters less if the results...

It was not always clear what different blood tests were for, but it matters less if the results...

Age at interview: 38
Sex: Female
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The first lots of blood tests were done at the hospital where they had, where they did the most detailed examinations, and I didn't always know what, exactly what they were looking for, but I more or less had an idea. 

And at the GP, it was, the thing that didn't work there was that the hospital, I had to have them re-taken - well, two of them anyway - because they got lost. But, you know, that's one of those things. But the doctor didn't do one that she was supposed to do, and then one got lost. So I had to go and have them done again at the hospital. But, you know, it's just one of those things that happened.

And were you clear what they were testing for in those blood tests?

Those ones I was, I was clear, yeah. I can't remember what they were now. Well, I know one was because I have a thyroid deficiency - so they were checking that, and that was the one that she forgot to do, and then I think it was probably haemoglobin. So I did know what those ones were, but the original significant number of blood tests I didn't really know all of what they were.

Does that worry you that you didn't know?

Not really no. I mean it's the same kind of thing, which is that if they say to you at the end, 'They're all fine', then you, then it doesn't matter. It's only if they start to say, 'Well, actually this is a bit low', or 'That's that', and then you want to know what the significance is.

 

Looking back she felt more explanation of the purpose of the 20-week anomaly scan would have been...

Looking back she felt more explanation of the purpose of the 20-week anomaly scan would have been...

Age at interview: 37
Sex: Female
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And at the second scan when they are looking for anomalies, as the name suggests, did you feel that you'd got a clear enough picture from them about what anomalies they were looking for?

Well I realised later that, perhaps I didn't ask, but yes, they didn't tell me what they were looking for. When I got the leaflet, because they give you the report to put in your file, then I read it, and then I saw that they check all the different things that they look at, so skull, organs, heart, etc. etc. 

Although, during the scan she did say, 'Look, this is the heart, and there are the four chambers, and we are looking at the blood flow'. OK, so I understood they were looking at any anomalies in the heart, but it's not that she went through the whole thing saying, 'Well, now we look at gastro-intestinal anomalies, or bone things'. 

I suppose in a way they don't waste time giving you a lesson in, I suppose many people will not understand what is being said. But yes there was not much information about exactly what was going on during the scan. I just lay down there and I let her do the scan. 

And it was only when I read the report - which is actually not very informative either, because it only says, you know, all the different things they look at, and there is a check, which apparently means normal, I hope. And that was it. And, well, they do say something like 'Anomalies detected - yes or no',  and it said, 'No'.

What do you think most women expect when they go for that twenty week scan?

I couldn't say. I haven't asked around. Well, basically because it is called an anomaly scan, well, I thought it was, 'OK, they will let me know if anything is wrong with the baby.' I suppose, you know, if it's a baby with four legs or two heads or something like that it will show. 

But the other problem is you're not really told what are the, how accurate is this test. You know, because everything is all risks and statistics, and we all know about stories of, 'They told me it was going to be like that, and it turned out exactly the opposite.' You know, 'It was going to be bad, and it turned out to be good', or the other way round. And that is something I think they haven't really explained to people. 

So they tell you, 'You have your anomaly scan. Come, have it and that's it - it's normal, or it's abnormal.' But what does that really mean? Because the fact that they told me it's normal, doesn't mean that it is normal 100%. I could still get there the day of the labour and have a baby with some problem. 

So they don't explain you that. And I know, I suppose they are concepts that are a bit difficult to grasp, perhaps, because they imply statistical analysis and things like that, but it can always be made easier to understand for everybody. 

So people would have a better idea of what to expect or what not to expect from these tests, because I suppose some people might think this is the ultimate test you can have, and if they tell you it's fine then you don't have to worry any more, or if they tell you there is something apparently wrong, then it's the end of the world. And so yes, that is a bit of an issue, I believe.

 

They had not fully appreciated what the 20-week scan was looking for.

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They had not fully appreciated what the 20-week scan was looking for.

Age at interview: 32
Sex: Female
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What about all the tests for other things such as spina bifida and so on and various blood tests that you were given? Did you feel you had enough to know what all of those were about?

Because of the little bits I'd read in the book I've got about tests and things, then I knew when she was looking at the baby's spine that's probably - well I didn't know, but I assumed that's what she was looking at in the tests. But they didn't mention that. They just say things like, "The spine looks good and strong and straight," or however it's meant to look, and they make a note of that on their funny sort of chart thing. 

And certainly the blood tests, I don't feel like I was given much information at all about. I mean, I just know they took loads the first time, and they took a very detailed family history but it wasn't entirely clear and I don't really know what they were doing, what they were testing for at that stage [the 20-week scan].

How did they describe it to you? The twenty week scan? The detailed scan? 

Yeah, it was a twenty-week or whatever scan, and I'm just trying to think whether they described it in any particular way.

They didn't call it an anomaly scan, for instance?

It says that on the bit of paper, the print-out. Yes, so you just go and have the scan, and it was only when we were walking out of the door that we looked at the - because the good thing about patient-held records is that you do, I have all these records of all my scans - and it does say, so we were reading it through and it says on the top in big letters 'anomaly scan', and you just think well, we didn't even know they were looking. 

I mean, you assume they're looking for things and they were sort of checking all the bits were there. So our baby had his hand over there, so actually they couldn't look at the lips and they had to check the lips. And that's the only way, really, that - and she didn't explain why they check the lips. But we had to wait a long time with them sort of prodding at the baby to make him move.

Because timing is very important for nuchal translucency scans, it is most effective if done before 14 weeks (it is normally done between 10 and 14 weeks of pregnancy), women need to know about this option early enough and not delay the dating scan past 14 weeks if they want one.

The NHS Fetal Anomaly Screening Programme now recommends that women have the combined screening for Down’s syndrome (blood test and nuchal translucency scan) rather than just the blood test or the nuchal translucency scan on its own. The vast majority of units in England, Scotland and Wales now offer combined screening for Down’s syndrome. The nuchal translucency scan was not routinely available when some of these women were interviewed and some paid privately to have this scan done.

 

Parents need to know early enough about nuchal scans to be able to book privately if necessary.

Parents need to know early enough about nuchal scans to be able to book privately if necessary.

Age at interview: 33
Sex: Female
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The first appointment actually was very good. They came to my house, spent a long time booking me in. That was good. I didn't actually see the midwives with my first pregnancy until I'd had the nuchal fetal scan. 

They didn't do booking in till twelve weeks, which is quite late, really, in the day, when it basically means that people can't have a nuchal fetal scan. They don't even know about it. But it's not offered within that area on the NHS, so you have to really be informed to even know it exists which is really bad, really bad.  

Perhaps they have a cut off, and they do booking-in later if they're over thirty five or something. I don't know. But within my experience of knowing people within, from locally, from, you know, mother and baby groups, just meeting people down the playground and things, it's a late booking-in and people didn't even know it existed. You know, the average person didn't even know it existed or they'd heard about it from a friend, not from health professionals.

Many people said how important it was for staff to take time to explain and answer questions. One woman contrasted her experience of this in the US with her positive experience of the UK. Another felt her own experience had been very good, but knew others had been less well informed.

 

She felt professionals she met in the UK gave more time to explain and listen than some staff she...

She felt professionals she met in the UK gave more time to explain and listen than some staff she...

Age at interview: 39
Sex: Female
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I mean, really the highlight is the contrast between my early experience in this doctor's office, where besides the nurse technician who did the scan, every staff member I dealt with did not really treat me as if they cared about me as a person. I was just another person on the schedule book. 

I had a doctor come in who gave me a check, and I had a number of questions I wanted to ask, and he didn't even ask me, 'Do you have any questions?' He rushed in, he did a check [clicks fingers] and he was out the door. I feel in a way, I feel empowered because I have done a lot of reading about pregnancy. 

You know I feel as if I can get the kind of care and get the kind of information that I need. That's really just, that's not difficult for me. I think a lot of women have more difficulty and maybe they have more difficulty kind of getting the information that they need or finding out what their choices are, or saying, 'I want to be treated better than this', or, 'I can find places where I can be treated better than this' - or that 'I even have an option'.

The contrast is that once I came over here, I was treated like a real person. I was treated like I mattered and that my thoughts and feelings were important. I know that that's also not always the case here - that I chose to go with somebody who I knew would give me that kind of experience, because I knew that that's what I needed, going through something as enormous as childbirth. 

So that's, I mean that's really the point I want to make, is how different one's experience can be if somebody will just take thirty seconds more to say, 'Do you have any questions? Is there anything that you're concerned about? Is there anything you need some help with? Is there anything I haven't covered'. That makes you feel like your concerns and your feelings are important and manageable.

 

Staff had informed her clearly about screening options but she knew other women who had been less...

Staff had informed her clearly about screening options but she knew other women who had been less...

Age at interview: 37
Sex: Female
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And you obviously got good information from the GP?

Yes.

About the very early screening?

Indeed. I found that I only realised that it was very good information when I checked, you know, with other pregnant women in my yoga class, and then they said that they hadn't received anything, or that the people were supposed to give them the information, didn't know anything about it and I was very surprised. 

Not only because I myself had a good input, but also because, you know, as a, as a person involved in health issues and these areas, you should expect that anybody working in that area should know. That is their duty to know and inform everybody else. I believe in health one of the most important things is education. You, even if you are not really very good at treating something, at least if you can teach people and educate them on health issues and prevention, that is a lot. 

And I was really astonished when they said that their midwives or their GPs didn't know anything about antenatal diagnosis, or at least they wouldn't tell them. I was aghast and I suppose if that is true, at least at such a level, then somebody should do something about it. 

Because I suppose I am a minority. I mean, not many people are really more confident on what they know or where they find, where to find information. Most people need to be told what is available in order to make an informed decision. And then if the people you expect to know that, should provide that information, don't give it, something is going wrong. So that I was surprised to hear and I hope that it's not very extended, I hope so.

One woman commented (as a GP) on how time-consuming it can be to inform people properly; for example, many discussions about screening do not include much about the conditions being tested for, as opposed to information about the tests and results.

 

It is time-consuming for health professionals to inform people fully, especially about all the...

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It is time-consuming for health professionals to inform people fully, especially about all the...

Age at interview: 29
Sex: Female
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Do you think, and it's maybe difficult to answer in a personal capacity because you never got as far as discussing Down's, say, but maybe from a professional capacity, do you think people are given enough information about what life would be like living with a condition to help them make decisions?

No, I think they're probably given very little at all. But, you know, I don't, you'd have, you'd be talking about a different ball game, you know, for, as, now speaking as a professional. You know, when I see a woman who comes along and says, you know, 'I've had a positive pregnancy test', they've usually arrived in a ten minute appointment, and I usually tell them to book another appointment pretty swiftly so that there's more time. 

But if you were really going to sit down and talk to somebody about, you know, what the, you know, the really broad and global implications of what's behind, you know, different screening tests, you know, you're talking about a couple of hours, you know, explaining to somebody what it would be like living with a child with Down's syndrome. 

I mean, you know, that's a big job, because Down's syndrome is not one thing as well - it's a spectrum of disability and you couldn't conceivably tell them.

No.

You know, what, where on that, there's just too many, you know. So, I wonder whether that would really help people make decisions as well, because you'd just be raising more questions than, many, many more questions than you answered, probably.  

Yes. 

So I wonder how much...

Yes it just often seems to happen so quickly for people.

How much information, you know, would, is actually helpful. I mean, I think people need to know, they do need to know what the tests are they've having done, and why they're having them done, and what it means. 

And if someone says to you, "Well, I don't know what Down's syndrome is," then you need, you have to explain. But I think, and, probably it's assumed by most health professionals they say, "Well, do you want any tests to find out a risk of Down's syndrome?" and if somebody says yes or no or 'I don't know, I want to know more'. But if they say yes or no I don't think that's pushed.
 

Books proved useful for many people, especially in their first pregnancy, although they used them more for general information about pregnancy than for screening. Advice from family and friends was also more helpful on general pregnancy information.

 

Books can be helpful, especially in a first pregnancy, but they can also make you anxious.

Books can be helpful, especially in a first pregnancy, but they can also make you anxious.

Age at interview: 23
Sex: Female
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It was all so new, like I couldn't decide even whether I was supposed to tell my parents that I was pregnant or whether I should wait 12 weeks to do that. Or, it was, it seemed like the biggest thing that had ever happened to me but I didn't know what to do or where to go. 

Emotionally I think it was hard. And of course I went out and bought a bunch of pregnancy books and I really, that was the way that I learned about things. Or the way that I scared myself and made myself feel better because, of course, the pregnancy books all talk about high risk of miscarriage in the first trimester. But they can also be reassuring. I mean they, it's nice to have information, I think.

Would you have liked to have more information from a midwife though?

Absolutely. I think it's hard to tell in books what is important because I think they try to cover everything, especially the things that can go wrong. You start to get the feeling that everything's going to go wrong in every pregnancy, and I think it would have been nice to talk to someone who could say, 'Yes, there are these terrible things but chances are everything's going to be okay.' 

I really would have liked to have someone talk to me. In the end, I told my Mum almost right away and she was a great emotional support. Because she has 5 kids of her own and has got there. I mean, I think that was what I was hoping to get from a doctor or a midwife or something, just a little bit of that support and information.

 

She found one helpful book with factual information. Talking to friends can make you more anxious.

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She found one helpful book with factual information. Talking to friends can make you more anxious.

Age at interview: 32
Sex: Female
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I think I did find a good book. I looked at quite a lot of books and a lot of them were all kind of lots of soft focus pictures of parenthood. And I found a nice book that just was all about answering your questions, really. And that's been really good because whenever I've felt anxious about something, you know, like when you get a pain somewhere, then I've gone and looked it up and it normally says, "You get pain," or sort of explains what it might be. 

So that's been quite good having that. I mean, obviously you get information from other people, but a lot of it I could do without really, because a lot of it seems to be focussed on the pain of childbirth, which is something you've got to go through anyway.  

And so a lot of what people want to tell you is their horror stories about giving birth, rather than about things like screening, because I think once people have got through it they don't necessarily want to talk about going and having scans and things. They might want to show you the photo but that seems to be it.

Antenatal classes usually happened too late to discuss screening. One woman in her second pregnancy discussed looking for information online. She felt that you have to know what questions you need to ask in the first place, which was a common concern amongst first-time mothers.

 

She looked for information on the internet but found it too technical. You need to know what...

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She looked for information on the internet but found it too technical. You need to know what...

Age at interview: 36
Sex: Female
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I have a fairly open mind about screening. There's always that concern I suppose that you're not getting enough information. 

Even for you as someone who is very well informed?

Yeah. I think there's always that feeling that, 'Have I missed something? Do I know the right questions to ask?' Because that's the key, isn't it? You've got to know the questions to ask, and how do you necessarily know what those questions are if you don't know the information? 

Or where you go to look to start with, because often you're just, you're seen around eight weeks pregnant, and suddenly four weeks time you've got this nuchal test, so what, where do you go? What do you do? 

Are there particular areas of information you feel that you've missed out on something, or it's just a general concern?

I did think, 'Where am I going to look? I just need to really reacquaint myself with - maybe things have changed, maybe it's all different to what I knew.' So I do remember I did try and look at a couple of websites for some information, but I have to say I did find it quite technical and academic, which isn't necessarily very helpful when really you just want plain English and some straightforward ways of just how you get that information backed up.

So it was very thin on the ground, I have to say. I do remember doing that actually, and feeling quite, 'Oh no.'

 

For first-time mothers it is difficult to know what questions to ask and what information you need.

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For first-time mothers it is difficult to know what questions to ask and what information you need.

Age at interview: 24
Sex: Female
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I mean, is she approachable, can you ask her things?

My midwife? Yeah, she's very nice and approachable, but I just find it, because it's my first I don't know kind of what to expect. I only get, know what to expect if someone maybe asks me, 'Well, have you done this?' and I'm like - or 'Well, has your midwife asked you this?' - and I'm like, 'Well, she hasn't to be honest'.  

So now when I see my midwife I go and ask her, 'Well has such-and-such happened, and how do I do such-and-such at certain times?'  Because when I normally see my midwife I get checked for the normal checks like a urine, my blood pressure and the position of the baby, but she doesn't ask me any other questions apart from that, to be honest, which I find hard.

Why do you think that is? Is that because she thinks you're young or what?

I don't know, I really don't know. Because it's my first time and I don't know what to expect and I don't know really know how it works.

And you don't know what you don't know?

No exactly. So I'm glad that I've got [partner's] mum because she's a midwife. Any questions I do have, I've been asking her, which has been very helpful to me as well anyway. So I don't know.

It's not ideal, is it?

No.

So what information were you given about screening tests, and I'm thinking about blood tests as well as the scans?

I wasn't given, I think I was given, I was given a leaflet. I read that.

And that was at what stage?

That was, I think that came as part of my pregnancy pack when I went to the hospital, and I saw a doctor and they took my blood and urine, and that day I was given a pregnancy pack and that came as part of it. Scans, she didn't, she, yeah she told me a little bit about scans and how they work, yeah, and we didn't talk, we didn't talk much about screening at all.

So nobody kind of said, 'Do you want screening?'

No, and like I said, because I don't know what to ask for and what to think, I wasn't, I didn't really ask for a screening.
 

Information is also an important issue at other stages in the screening process. For example, during scans and when people are given the results, and features in many other summaries.

For more information, see our 'Resources and Information' section.

Last reviewed July 2017.
Last updated July 2017.

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