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 wed had. But I didn’t feel at any stage that there was any value-based judgements being made by her.

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.

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.

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.

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.

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.

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 ones 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.

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.

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 everythings 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 everythings 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.