Antenatal Screening

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?'
 

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.
 

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.
 

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.
 

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.
 

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.'
 

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.