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Stillbirth Research and Education
Future of stillbirth research and education in Australia

GARDOSI, Professor Jason, Executive Director, Perinatal Institute (UK)


Evidence was taken via video conference—

CHAIR: I welcome Professor Jason Gardosi from the Perinatal Institute UK via video conference—actually from St Petersburg. Thank you for joining us today. As you are giving evidence from overseas, you should be aware that parliamentary privilege only applies within Australia. If you are concerned that you may be disadvantaged on account of the evidence you're about to give, you may request to give evidence in camera. The committee has received your submission as submission 257. Do you wish to make any corrections to your submission?

Prof. Gardosi : No, I don't, thank you.

CHAIR: Would you like to make a brief opening statement before we go to questions?

Prof. Gardosi : Thank you. I'm executive director of the Perinatal Institute in Birmingham, UK, and I'm an Honorary Professor of Maternal and Perinatal Health at the University of Warwick. Thank you for inviting the Perinatal Institute to make a submission and for me to appear at this hearing. Stillbirth has been an issue for us for a long time. In fact, personally, it dates back 40 years to when I was a medical student at the University of Western Australia. During my clinical attachment a family experienced a stillbirth. I took it on as an elective to follow them up and visit them in their home—I think it was at Narrogin in the south of Western Australia—and spend some time with them. They, like many others, had a diagnosis, or non-diagnosis, of 'unexplained stillbirth' and were trying to come to terms with it.

Years later, when I was training in obstetrics and gynaecology and subsequently as a consultant, I remembered that. I kept seeing the same patients and the same heartbreak. In fact, what I've been seeing in the depositions that have been submitted to you shows that there is really just the same heartbreak in Australia as there is in the UK and anywhere else.

We made it our mission to, in a general sense, improve the quality and safety of maternity care and particularly to look at stillbirth. There has been a long-accepted concept of the unexplained stillbirth, which we felt we could not accept. I'm fortunate to have a multiprofessional team around me at the Perinatal Institute, who are all just as motivated and seeking to address the issue. We felt that over the last few years we have been able to make inroads into this which I feel might be of relevance to the place where you are at present in terms of trying to address stillbirth rates in Australia. So we would be very pleased to provide any assistance we can in your deliberations.

CHAIR: Thank you very much, professor. We'll go to questions.

Senator KENEALLY: Thank you very much for your time today. Your submission, which we have just received, mentions very impressive results from the GAP program. In particular, the drop in stillbirth rates in the UK where the GAP program has been rolled out is quite notable. Could you speak a bit more about why you targeted fetal growth and how the program works in a hospital setting?

Prof. Gardosi : We are currently a not-for-profit independent national organisation, but before then I established the Perinatal Institute in the West Midlands, which was a region with consistently the highest or certainly one of the highest perinatal mortality rates, including stillbirth rates, in the country. Our mission statement back in 2000 was to understand the causes and develop strategies for prevention on that basis. So we started looking at stillbirths and looking at them from the perspective of avoidability. We found that we should actually look at the growth status of the stillbirths by looking at what the weight of that fetus was. Many of the deaths were, in fact, babies where the placenta had failed and the baby was smaller than would have been expected. We were also able to measure this more accurately with customised centiles which had been developed by then.

We found that, in fact, often normally formed stillbirths—by the way, when I'm talking about stillbirths in the UK we are counting them from 24 weeks, not 20 weeks—we found that 50 per cent or more, over half of stillbirths when excluding were of babies that had not reached their growth potential. One of the reasons why this was not recognised before was because many classification systems have relied on whether or not there was antenatal recognition of fetal growth restriction. If you don't recognise it antenatally and you also miss it postnatally, when you're trying to understand what caused it—therefore we went at it retrospectively and found how many of these babies were not only not recognised but were actually smaller than they should be. We found that over half were like that. So we developed a strategy to try to improve antenatal recognition. That really is one of the main things that is making a difference.

Senator KENEALLY: So essentially you had information that told you something about babies who were stillborn, and you decided to use that as a way to address prevention. How does it operate in the hospital system? You've developed charts that you use as a guideline. Can you tell us a bit more about that?

Prof. Gardosi : Can I add to that that in addition to looking at the weights of babies that died, we also did a series of confidential inquiries that gave us pointers in terms of what the care was and what went wrong. That was quite important in developing the strategy, because we felt that there was not a proper way of risk assessing pregnancies, of knowing which pregnancies have increased risk of the baby dying, so they were not followed up. We also found that clinicians did not have proper protocols for the surveillance of fetal growth during pregnancy, and that included low—risk pregnancies. Additionally, it should have been fundal height measurements, which is our standard method, and then, for increased-risk pregnancies, serial ultrasounds. For low-risk pregnancies they were having fundal height measurements in all sorts of different ways. In fact, usually it's wrongly called symphysis fundal height measurement. Allow me to go into this in some detail. It's the wrong way round. Even the measurement of the fundus during pregnancy needs to be standardised. It should be from the top of the bump down to the fixed point, which is the symphysis pubis. Doing it the other way increases the guesswork.

So we felt that really needed to be standardised. When I was doing courses for medical students and I asked them to show me how they learned how to do a fundal height measurement, I had maybe five medical students around the bedside and they showed me five different ways. The same applies to midwives. So we felt we needed to develop a standardised way of doing it and taught that. That was how our learning of what was happening was translated into the protocols and training schedules that we then implemented.

For high-risk pregnancies—regrettably this is still happening at times in many places today—there was a slightly cavalier attitude in terms of when to do scans. Every consultant had a different method or preference, and none of it was evidence based. Very often we have shortages of ultrasound resources as well.

The end result of that was that in the third trimester—in the second half of pregnancy from 24 or 28 weeks onwards—mothers with babies at increased risk of fetal growth restriction did not have the surveillance that they needed. So we therefore again made recommendations in terms of what the protocol should be and to increase that element of surveillance as well. So those were the aspects that we were addressing in terms of the surveillance.

If I can just add one thing: together with that, of course, you needed then to establish a way of monitoring what you're doing, and so from early on we campaigned for the acceptance of a performance indicator, which was the antenatal detection of fetal growth restriction, defined as a small-for-gestation-age baby at birth. Once that is accepted and hospitals, the health service, actually looks at this as an accepted, important priority in the care, then they can also benchmark and measure their performance in response to training and whatever improvements they would have wanted to implement.

Senator KENEALLY: Your submission talks about how you implement this with workshops and training in the hospitals and you have designated NHS trust and health boards that have taken up the GAP program. You say you get regular inquiries from expectant parents wanting to know whether the hospital they intend to book at is in the GAP program. That's quite a significant achievement. You've got 127 of 157 health boards. I don't know your health system well enough to know how it operates, but is this something that the Department of Health and Social Care has looked at implementing across the country or is this just something that has sort of taken off organically as various health boards see the success?

Prof. Gardosi : Our NHS is very careful not to prescribe to the hospitals—most of which are independent foundation trusts—what to do, which is regrettable but this is the approach that they're taking. The recent audit, which only just came out in July, of what's called the NHS Saving Babies' Lives Care Bundle again supports what we're doing in terms of the independent assessment of the detection rate; it reported on the results of improvement in antenatal detection of the hospital trusts that they looked at, and 15 out of 19 of these were in the GAP program and the data that they were able to analyse were mostly from these cases, yet still they cannot put into the reports that it is—and all of them were using customised charts, but even there they cannot sort of come down on that side of the fence, because they want to be very non-committal. So there hasn't been, regrettably, any sort of national endorsement other than that there is this care bundle, which I set out in the submission, which includes an element of fetal growth assessment and which also includes the things that we were arguing for which—in other words, the importance of having the antenatal detection as a performance indicator. So, it has been helping in that regard, but that has come along really only in 2016.

Before then, it was very much an organic increase. Essentially it was clinicians in the front line that were the ones that we were really targeting, rather than trying to convince all the academics who were perhaps going into their own research priorities. So we felt frontline clinicians had a stake in this, and they were the ones who ended up wanting to implement this and went with it.

Senator KENEALLY: It sounds as if your health system, while it's obviously different to Australia's, has the same challenges around being a bit more fragmented rather than a unitary system. But I note that, at the end of last year—I think it was November—the health minister in the UK set a target to half the rate of stillbirth by 2030. He said he wanted the UK to be the safest place in the world to give birth. For our benefit, could you maybe just reflect upon that. Is having a national target motivating behaviour? Is it motivating behaviour in terms of clinical practice, awareness or, indeed, even uptake of the GAP program?

Prof. Gardosi : I don't want to get into the politics of it too much, but one of the characteristics of that target—I think it was the third time it was revised—the initial one, which is the one we use in our newsletters, was that by 2020 it should be reduced by, I think it was, 20 per cent. Do you remember that?

Senator KENEALLY: Yes, I do.

Prof. Gardosi : And we, in fact, are on course to fulfilling it, because we are able to report—

Senator KENEALLY: You're on course to fulfilling it?

Prof. Gardosi : Yes.

Senator KENEALLY: Sorry; the line broke up there. You are on course; okay.

Prof. Gardosi : Yes, because, in our latest report, based on the latest Office for National Statistics figures, we have, compared to the preceding 10-year average, reduced the stillbirth rates in England by 23 per cent.

Senator RICE: Phenomenal.

Prof. Gardosi : But, in the meantime, the target was revised to be a percentage—I don't remember what it was—by 2025, and then again by 2030. My only comment on this, and I have to be careful here, but I do believe this, is that it's very easy to put a target, in terms of stillbirth reduction or climate change or anything else, which is, like, 20, 30 or 50 years ahead, because that particular government is not going to be there to explain why the target has not been full fulfilled. I like short-term targets and targets that are actually able to be fulfilled and are achievable and demonstrable so that the people who are there who are working today can actually say, 'Okay, what can I do by next year?' or by the end in the next three years or whatever.

CHAIR: As you know, we have a high rate of stillbirth for First Nations families. How would you advise this committee to interpret your success in ways that would be culturally appropriate here in Australia for our First Nations families?

Prof. Gardosi : There are two aspects to that. Firstly, of course, with any groups—and, I suspect, more socially deprived groups in terms of socioeconomic status and so on—there are particular challenges which the health service needs to address, and I'm sure that many of these are already being done and are happening in Australia. But, secondly, we believe that, underlying all of the additional challenges that befall your minority groups—as they do also at different levels in the UK—are challenges relating to the recognition of placental insufficiency. As I said at the beginning, this focus still relates to over half of the normally formed foetuses. Therefore, if you want to address these then you need to make sure that the same message gets to all parts of your maternity population and you need to recognise what additional challenges there are to engage with the mothers of these ethnic minority groups. You need to make sure that they are benefiting from the same information, the same education, the same services that are required to make pregnancy safe in this regard, but at the same time in all other regards which constitute a risk for fetal wellbeing.

Senator RICE: Thank you, Professor. It's really interesting stuff and I'm thinking, yes, we should be able to adopt it and use it in Australia. As I understand it, to summarise the work: you are getting accurate measurements of fetal growth and then, with a common standard, you've got customised growth charts for particular ethnic backgrounds, and you're doing those measurements over time to identify where there is a restriction of fetal growth. There are two things I'm interested in. One is how many different customised growth charts are you using?

Prof. Gardosi : We have released what we call a bulk-centre calculator for clinicians to use for research we are about to release—that's a global version. We're about to release the global version of the antenatal growth charts, which includes 120 ethnic groups. We have nine or 10 ethnic groups from the Australian population and many others from different parts of the world. In my current discussions here with senior clinicians from Russia I've found, to my slight surprise, that rather than it being a homogenous country, it is also very heterogeneous. It has people from Kazakhstan, Uzbekistan, Armenia, Georgia et cetera, and so therefore we'll be adding those. Thanks to their contribution of their data, we will be analysing additional ethnic groups, so it might be more than that. But currently we have 120 different ethnic groups that we can account for and adjust for.

Senator RICE: Yes, which is very interesting. We were discussing earlier in our hearings the different outcomes for women of different ethnic backgrounds. We were asking our bodies responsible for data collection whether they could account for that in terms of the data they were collecting. It seems to me you're actually going to have your data sets and, depending on which growth chart the woman is associated with, it should be an indicator that could then be used in that data collection. Is that the case?

Prof. Gardosi : Yes, it is, if I understand your point correctly. The GROW program in the United Kingdom is now generating about 700,000 charts a year, which are being produced after the entry of a core set of information. This information is about the characteristics of the mother: her height, her weight, her previous pregnancies, her ethnicity and so on. And also, after delivery, we add some core outcome indicators and, of course, whether or not there was any antenatal recognition of growth problems so that we can audit that. That then already constitutes a core data set. We now have well over a million cases from which we have created information that we can analyse, so implementation of the package, the GROW software, customises and is able to produce individually adjusted growth charts. At the same time, it is able to also deliver the core data set for monitoring this aspect, as well as additional aspects of the care and access to care and so on that you might want to monitor.

Senator RICE: That's really useful and interesting. The other point I wanted to go to is just an understanding of what, if by following these customised growth charts that fetal growth restriction is identified, is the protocol for interventions that are then taken at that point?

Prof. Gardosi : There are ever-evolving protocols in terms of the additional investigations and their interpretations. For example, there are doppler studies to try to analyse how well the placenta is working, and there are different parameters of dopplers which are then relevant at different gestations, different maturities of the fetus. There are guidelines on that which are ever emerging, but there are basic ones that were up to date when they were written—for example, with the Royal College of Obstetricians and Gynaecologists in the UK. That relates to the management of the baby that is already recognised as being at risk. Ultimately, with everything else being equal, and with most of the growth restriction being of relatively late onset—we tend to describe early and late onset—the recommendation now tends to be that a baby should be considered and the mother should be, of course, advised that delivery at, let's say, 38 weeks would be advisable, if there is evidence that the baby is not growing well. So, in terms of the management guidelines, that is ever-evolving but there is a body of evidence which clinicians do, by and large, follow.

Our main challenge is to try to identify the babies that require the further investigation, because, in our experience, most of them are not identified, and most instances of a mother suddenly feeling no fetal movements has not been suspected, has not been recognised, and is just coming out of the blue without the health service having any idea that this baby was suffering before it died. So, our focus has been to try to identify the babies that require further investigation, and then, of course, leave it to the health service and the maternal-fetal medicine specialists to, case-by-case, make the decision as to what to advise the mother and how to carry on with the pregnancy or to interrupt it and induce or deliver by Caesarean section.

Senator RICE: Obviously, once you have actually identified women with fetal growth restriction, then you are going to be building a body of evidence as you are monitoring it as to what the interventions should be.

Prof. Gardosi : There's already a body of evidence that we published on this. First of all, a baby that is small for its gestational age in the womb has a sevenfold increase in the risk of stillbirth while it is in the womb. If it is recognised that it is the small for gestational age, then this risk immediately drops by half. If it is not recognised, then it approximately doubles. Therefore, while it is still in the womb, it increasingly—towards term as well—has the risk of dying. That is the main aspect. Once it is recognised, the reason why the risk drops and the baby does better is thanks to advances in obstetric imaging and maternal-fetal medicine. In some instances, those babies are doing better than even the general population, if that makes sense, because they have already come to the health service.

Senator MOLAN: If you trained in Western Australia, you would certainly be aware of our federal system and the complications that has for everything we do. Yet, the National Health Service, I understand, is at least a single authority. That's about all that I know about it, apart from what I hear. We have an extraordinary group of clever clinicians and researchers and caring people. But one of our previous witnesses told us that we've spent, over the last ten years, $140 million on research which may have contributed to some clinical guidelines but has made no impact on the number of stillbirths over that period of time. How would you comment on the following statement? With limited resources there is so much that we could do in this country just by doing things, as you seem to have done, rather than spending large amounts of money on research. Everyone has told us of the inadequacy of our data, so we seem to have moved to the area of: let's do more research; let's centralise it, pull it in and analyse it. We've knocked ourselves out over the last ten years—$140 million—yet you have taken one aspect and achieved a significant reduction by just doing it. Does that make sense?

Prof. Gardosi : Can I first go back to your first point—that the NHS system is one homogenous system.

Senator MOLAN: Not quite?

Prof. Gardosi : It is different in England, Wales, Scotland and—

Teleconference interrupted—

Prof. Gardosi : These have evolved, and there were particular challenges for us. But, just to give an example, it was after the National Assembly for Wales investigation into stillbirth several years ago, where I also had the opportunity to testify, that the program that was then recommended included the rollout of the GAP program in all the units now in Wales. So they are now involved and are improving their detection rates, and we're waiting for the next figures. But I'm sure they will also show a similar reduction in stillbirths. What I'm saying is that it requires effort to look into it and political will to do it, even in the various areas of the NHS. This is one of the challenges that we've had, but it has been progressing quite well. And Scotland, by the way, also commissioned the GAP program several years ago nationally. In terms of research and focusing on what, from what you're saying, you would perhaps regard as a quick win—am I interpreting what you're saying correctly?

Senator MOLAN: That's correct, yes.

Prof. Gardosi : I think it would be wrong to stop research. We identified something that needs fixing quickly because of the emerging evidence, which we ourselves and others have initiated, to recognise that most unexplained stillbirths are actually avoidable. First of all, they should not be unexplained. Once you've recognised this problem—that they are potentially avoidable—that motivates a lot of clinicians, and I think it's started to motivate clinicians in Australia as well. I pointed out that more and more frontline clinicians are already adopting the customised charts—using them and so on.

But our intervention, or this package, only goes so far. There is lots of room for research. There are lots of unanswered questions. I do agree with you that you've got some excellent researchers in Australia, and I think they need to be supported to carry on with this. But in parallel I would suggest—because it's not one or the other, and I think everybody in Australia is just as good at multitasking as elsewhere—you should consider dealing with this issue now at the same time as you're considering, independently, what are the best bangs for bucks in terms of research to try to improve. Because, as I said, this only goes so far. There are still a lot of questions to be answered, and I think that ought not to be interrupted.

Senator MOLAN: Thank you. That's good advice—doing things in parallel. But we don't need to repeat your research, do we? FGR is something that we could move on as fast as you have.

Prof. Gardosi : Yes. And I pointed out in my submission that there is already evidence that implementation at the local level has already improved and that detection rates have increased at the same levels as we have on average here in England.

CHAIR: On that note, Professor Gardosi, thank you very much for joining us here in Australia and taking time out of your busy schedule. We very much appreciate it. Thank you also for the incredible work that you're doing that we can all learn from.

Prof. Gardosi : Thank you for inviting me. It was a great pleasure.

CHAIR: I just need to go through some formalities before we close. I need a motion from a member of the committee accepting a document.

Senator MOLAN: Yes please.

CHAIR: That concludes today's proceedings. The committee has agreed that answers to questions taken on notice at today's hearing should be returned by Friday, 5 October 2018. I thank all witnesses for their evidence to the committee today. Thanks also to Hansard, broadcasting and the secretariat. I declare the hearing here in Canberra adjourned.

Committee adjourned at 17:20