14
Preterm Birth Committee
Corrected oral evidence: Preterm birth
Monday 12 February 2024
3.30 pm
Members present: Lord Patel (The Chair); Baroness Cumberlege; Baroness Owen of Alderley Edge; Baroness Seccombe; Baroness Thornhill; Baroness Watkins of Tavistock; Lord Winston; Baroness Wyld.
Evidence Session No. 2 Heard in Public Questions 17 - 29
Witnesses
I: Clea Harmer, Chief Executive, Sands; Kath Abrahams, Chief Executive, Tommy’s; David Badcock, Chief Executive, Borne.
Clea Harmer, Kath Abrahams and David Badcock.
Q17 The Chair: Welcome to our next panel. Thank you for coming to help us with our evidence session today. I hope you do not mind, but I will say your names as they have been written for me. Before we start, can you introduce yourselves so that we have it on the record? Can I start with Kath Abrahams, please?
Kath Abrahams: I am the chief executive of Tommy’s.
David Badcock: I am the chief executive of the Borne Foundation.
Clea Harmer: I am the chief executive of Sands.
Q18 The Chair: Thank you for coming today. Committee members will ask direct questions and then we will have supplementaries. We have about an hour to get information from you. Before I kick off, I should declare my interests. I am a professor emeritus of obstetrics, a fellow of several of the medical royal colleges and faculties, a fellow of the Academy of Medical Sciences and a fellow of the Royal Society of Edinburgh.
I want to start by getting an overview, because you all represent individual charities that work in the field of preterm labour and preterm birth, on which we are concentrating today. Can you give us an overview of your organisations’ strategies on preterm births? Also, I know that you are involved in funding research. Do you mind telling us what kinds of research you fund?
Clea Harmer: At Sands, we have two main core aims. The first is to save babies’ lives. We do this by trying to increase understanding of the reasons why babies die and pregnancies are lost, focusing in particular on improving the maternity care that is given.
Our other aim is to ensure that anybody affected by the death of a baby gets the care and support that they need. We do this by providing bereavement support through hundreds of volunteer befrienders and our own support services, using a broad range of channels from online ones—via social media—to one-to-one support. The bereavement care that we facilitate is given by healthcare professionals after a baby has died. It is also given by employers for anybody in their workforce who has experienced the death of a baby. We provide training and resources, and lead on the National Bereavement Care Pathway.
For us, preterm birth is key. At the heart of everything that Sands does is the voice of bereaved parents. For those parents, it is about understanding why their baby died and understanding that the legacy of their baby’s death will be that other people do not have to go through it. That means that our focus on decreasing preterm births will improve the stillbirth and neonatal death rates. For us, that focus on every stage of care, from pre conception through to pregnancy and the neonatal period, is key.
The other element is focusing on bereavement care. Although this has not been talked about much yet, the sad fact is that quite a lot of the babies who are born preterm will die at some point in the neonatal stage. Ensuring that the parents and their families are supported is crucial, so we do a lot of work on that. In particular, we focus on inequalities and making sure that different groups get the care and support they need. Going back to what Baroness Cumberlege said in the first session about Travellers, the needs of such groups are focused on.
Our research falls into two categories. We support and fund research that prevents preterm birth. An example of that is the POPS and POPS2 research, which is looking at diagnostic screening tools for small gestational-age babies during the third trimester and picking up women who are more at risk so that they can be put on the right pathway. We are also supporting the C-STICH trials on cervical cerclage and preventing spontaneous preterm labour. We look at environmental factors, such as air pollution, and their effect on preterm birth rates; we are supporting research into that. We also supported research into Covid.
Alongside that, we do a lot of research into improving end-of-life and palliative care on neonatal units, empowering physicians to have those difficult conversations in the most supportive way. How can we improve end-of-term care in hospices as well as in neonatal units? With those two elements of bereavement—support and care, and saving babies’ lives—we try to wrap around the parents in the middle.
Kath Abrahams: Tommy’s was founded over 30 years ago. Originally, it was a campaign to raise money for preterm birth projects that came out of St Thomas’ Hospital. We are now the leading charity funder of pregnancy and maternal health research, and we work to reduce pregnancy complications and save babies’ lives. Those are our two aims.
We have a small number of national research centres that focus on finding new ways to predict and prevent miscarriage, stillbirth and preterm birth, alongside improving pregnancy outcomes. It is really important for us that we translate those research breakthroughs as quickly as possible into making a difference for patients. We are all about the journey from making discoveries to making a difference.
We do this in a number of ways. First, together with Sands, we run a joint policy unit that focuses on achieving policy change so that fewer babies die and inequalities in baby loss are eliminated. Secondly, we work directly with women and birthing people and their families to provide good-quality information that they can trust. Thirdly, we support women throughout the pregnancy journey. We have increasingly been focusing on making sure that we support women who are more likely to have unequal outcomes. I heard in the previous session about some of the work that we have been trying to do, such as working with communities that we are traditionally not very good at reaching.
Next month, on 20 March, we will launch a new centre—Tommy’s National Centre for Preterm Birth Research—so, for us, this inquiry feels incredibly timely and we really welcome it. This is a critical area for us to focus on. As you know, our preterm birth rate is higher than in most comparable countries. It is a very costly area and, behind each statistic, there is somebody who has had a difficult, often tragic, experience.
We know that preterm birth is a complex medical issue with many potential causes—you were told about that in the previous session—which is why we have brought together a collaboration of five leading institutes to unite a critical mass of research. A lot of the research on preterm birth up to now has been based on relatively small, discrete projects rather than looking at tackling the problem as a whole. We simply do not know enough about why preterm birth happens, so we are looking at the causes and looking to reduce inequities in outcomes and to improve outcomes for both mothers and babies.
We are bringing together leading experts and we will look at a number of projects as part of the new centre. I would be happy to send you afterwards a list of all the projects that we hope to fund through it. Our intention is that by funding a five-year commitment—obviously we have to go out and raise the money through our amazing donors—we will provide a commitment and, we hope, leverage further funding. One of the key things here is that we do not think that enough research funding goes into this area.
We will focus on three areas: making sure that we understand the causes better; making sure that we develop new diagnostics and treatments; and making sure that we provide women with good psychological support, because we know that this issue can be psychologically damaging for people. I will mention just a couple of projects as part of the centre. We want to understand more about the genetics of preterm birth; many studies have looked at that in women of European ancestry, but far fewer have looked at the causes in other ethnicities.
Obviously, the reasons for preterm birth are multifactorial. Some of it is about the system and the extent to which people can engage with the healthcare system, but we also want to understand whether genetics play a role here. We are doing some large-scale studies using 19,000 DNA samples from women of African ancestry, and we are hoping to use a large dataset run by the Fetal Medicine Foundation in south-east London to understand whether there are things that we could change.
David Badcock: Unsurprisingly, the aims of the Borne Foundation are very similar to those of my colleagues at Sands and Tommy’s. However, we are slightly different in that we do not offer support services but are solely focused on medical research. We fundraise and award grant funding for researchers and scientists to conduct research. That is what we do. We are smaller than the other charities and that is where we focus our aim.
We were set up about 10 years ago by an obstetrician at Chelsea and Westminster Hospital. He witnessed the devastating impact of preterm birth on not just babies but families. He formed the organisation to try to find an answer and solve the reasons why some women go into labour early. Our vision is a future where every baby has the best chance of a full and healthy life; as I said, we do that by funding medical research across the country.
We know that this area is very underfunded, which is why we exist. We think that the Government should provide much more funding for this disease area. We exist because we are, in essence, plugging the gap: we are trying to raise money to do more of the research that we want to do. We believe that this should be an orphan condition and that the Government should treat it in that way.
We bring people together to deliver the very best research. We established what we call the Borne Collaborative, which is a group of scientists, clinicians and academics from around the world who have extremely good experience in preterm birth. We bring them together to try to develop the best ideas to go forward. We want to attract the brightest minds into this area because it is not an easy area to get into; pregnancy and maternity care are extremely complex areas to get into.
We also want to advocate on behalf of patients because we know that there is not a loud voice here and we want to amplify. When I say “patients”, I mean the parents of children who are born early. Unlike with other conditions such as cancer, where individuals can speak about their experiences and what they have been like, children cannot do that and parents find it difficult to do that sometimes. This is another area that we try to work with.
I will give some examples of the research that we are doing. Our major project is called BUMP—the Borne uterine mapping project. This project collects samples from women in labour, including preterm labour, so that we can start to map the processes that the body goes through when women go into labour. It is a large study and we are in the early feasibility phase of it. We are looking to move soon into phase 2, where we will start to analyse the samples that we have collected.
We have another study called Prevent, which is about how we can prevent women going into labour. Essentially, it means screening women at a much earlier stage; we would like to screen all women in the early stages of pregnancy—that would be an ideal thing to do—so that we can start to look at early risk factors for preterm birth that are not getting picked up at the moment. There are a number of other research projects but I will stop there.
The Chair: Can I just tease that out a bit further? You mentioned screening all women but for what and how?
David Badcock: It is for risk factors of preterm birth, in an ideal world. At the moment, women are not deemed at high risk unless they have already had a preterm baby—that is my understanding—so they are not screened early enough to pick this up.
Lord Winston: What would you screen them for?
David Badcock: There are various risk factors. I am hesitant to go into the detail that my scientific colleagues could go into, but we screen for the risk factors of preterm labour.
The Chair: We will explore that with your scientific colleagues in future sessions. I declare my interest as a former obstetrician, like Lord Winston. It is important that, whenever you do any screening test, there is an evidence base behind it; otherwise, you could end up doing harm.
I am hearing, not necessarily from Sands but from Tommy’s and Borne, that most of your research is focused on the prevention and better understanding of preterm labour, but not on the neonatal side. That is perfectly acceptable; I am just clarifying where you interests are. Is there a need for the co-ordination of research efforts in a defined area that is likely to prove fruitful, rather than a fishing expedition with multiple people in multiple waters hopefully catching something? Please answer briefly.
Kath Abrahams: Yes, to be brief.
David Badcock: Absolutely; I agree. If we work together, it will be much more effective. We already work together in many ways—we are not separate—and we have good communication.
The Chair: For Sands, the question is different. It is about the psychological aspects that you pick up to support bereaved parents—or, for that matter, parents whose babies may be in a neonatal nursery in the long term. Who provides the psychological support?
Clea Harmer: As you know, it is about a pyramid of care. At the base is society and a societal understanding of what it means when a baby dies and how to provide support without it being a taboo—without crossing the road and trying not to talk about it. The next level up is the kind of support that charities provide: peer support, counselling and psychological support. Then there is psychiatric support.
Q19 Baroness Thornhill: I will pick up on that. What are your organisations’ assessments of the current rate of preterm birth? How are we doing, comparatively speaking? In particular, what impact does this have on babies, parents and families?
Clea Harmer: As you heard in the previous session, we are not on target for 6% at all and, however you look at it, it is a complex picture. The number of earlier, pre-24 week babies who survive makes that even more complicated. We can talk about that because the psychological effects are quite profound for parents. You heard a little about the impact on babies and parents in the previous session but a big bit of what we do is trying to understand why this happens in order to save babies’ lives—not just to provide care but to stop it happening. This is what parents want us to do.
One thing that is really important about preterm births, in terms of both stillbirths and neonatal deaths, is that they are all covered by the perinatal mortality review tool. Every time a baby dies, it should be used and a review of the care given should happen; this includes the parents, who are the only people who are there all the time—360—and the only people who can give bits of that evidence. At the moment, it is patchy: some places do it really well but others not so well. There is an impact on parents of not knowing why. Also, for subsequent pregnancies, how do you go into another pregnancy not knowing whether exactly the same thing will happen again? So, some of the really important things are to look at care; to use things like the perinatal mortality review tool; and to look at safety issues and maternity care across the board.
Kath Abrahams: I agree with everything that Clea has said. I would add two things. One is that, obviously, preterm birth increases the risk of developmental issues, educational challenges and stress-related mental health problems for both the child and the parents. It also impacts on a number of things beyond that: research shows that it can lead to repeat preterm birth and increased miscarriage, as well as increased rates of some chronic conditions such as diabetes and cardiovascular disease. That is a pretty grim picture; it is therefore hugely important that we look at this area.
Beyond the physical impact, preterm births deeply affect parents. In 2021, we did a survey of 1,000 parents of babies who were born preterm. One in three said that they suffered from anxiety, depression or post-traumatic stress disorder. More than half felt guilty or that they had failed, which is such an appalling thing to feel—that it was somehow their fault. They felt guilty for not being able to enjoy their baby once they got them home. Nearly three-quarters of people felt that they did not really understand what was happening to them.
One of the big issues is that awareness of preterm birth is so low that, when it happens, it can come as a complete shock. People do not really know what is happening and do not have the right information. Words that we hear often are “overwhelmed”, “defeated” and “scared”. The journey does not end when you take your baby home because you continue to live with the worry without having the kind of wraparound care that they had when they were in the neonatal unit.
David Badcock: Absolutely. We agree with everything that has just been said. We hear almost every day about the impact that preterm birth has on families through the patients whom our obstetrician sees. It is not just about the impact on the individual; it is about the impact on the wider family. If that baby has a severe disability, they will need lifelong care and support from not just the Government but, of course, their parents. It means that parents are not able to go to work and contribute to society as they would have done in other cases, so it has long knock-on effects.
The development of treatments to prevent preterm birth has not changed in many years, although it may have gotten slightly better in some cases. There is a real problem that we are just not moving forward fast enough as a result. Where there has been an impact and where we have developed some treatments that can treat preterm birth, we have seen that more babies survive preterm birth but they still have severe complications. In fact, more babies then require long-term care than previously, so there is a paradox in that respect. The cost to the NHS is enormous and continues to be so; that is what we want to change.
Q20 Baroness Thornhill: I was somewhat concerned by someone using the words “inconsistent” and “patchy” with regard to things that we know work—particularly from across the road—not being applied consistently. That must be a worry, clearly. What is going wrong? What are the barriers to things not being fully disseminated everywhere? Does the CQC have a role in that when it reviews maternity services? How can we get things that clearly and demonstrably work used more widely?
Clea Harmer: That is the absolutely key question in all this. It is about maternity care. I am sure you are all aware of Shrewsbury, Telford and East Kent; these all come back to the care that is given, and preterm birth is inextricably linked to that. It is complex and messy. It is easy not to address and get into it because it is about human behaviour and systems, culture, staff, the current situation, how you retain and recruit, and how you support and provide training. In order to address all the aspects of maternity safety—preterm is just one of those—that is the space we all have to be brave enough to get into, working with parents and professionals. Speaking as a qualified doctor, professionals go in to do the very best they possibly can. What is it about the current system that means we cannot provide consistent care?
The Chair: Basically, what Baroness Thornhill is saying—you agreed with it—is that, if what we know makes a difference now were implemented and the variation were cut out, it would lead to better outcomes. Is that what you are saying?
Clea Harmer: Yes.
Kath Abrahams: I would add one thing to do with what we are hoping to do with our new centre. You ask how we can solve this. Although our new centre will be a collaboration of five leading institutes, it will also be linked to the UK Preterm Birth Clinical Network—a network of currently more than 100 centres that have clinics associated with them. We want to make sure that there is good information flow both ways because one of the biggest issues is that some of the interventions that could work and could help are not necessarily being applied.
The Chair: Is it the role of the network to establish common practices that lead to better outcomes?
Kath Abrahams: It is one route to make sure that all the right information is going to the people on the ground, but that is not solely its responsibility.
Lord Winston: Forgive me, but how can a small charity—all three of you represent small charities—possibly have that ambition and do it successfully? It seems a colossal task. Research costs money.
Kath Abrahams: I would not want to suggest at all that we can solve the problem on our own. It will take lots of different routes to solve it and we want to play our part. As Clea said, we have to make sure that all hospitals offer the same care to people, but that absolutely cannot be done without working closely with the Government. We would love to see preterm birth in the women’s health strategy, for example, and we would love to have clear guidelines that all people could apply, but we do not think that that is solely our responsibility or that we can solve it alone. However, we want to be part of the solution.
The Chair: David, do you have any additional comments?
David Badcock: No. I agree with that.
Q21 Baroness Seccombe: We are partly down the road to knowing the answer to this, I think, but do you expect the Government to achieve their ambition of just 6% of live births being preterm by 2025? If yes, why? Alternatively, why not?
Clea Harmer: I think that the answer is no; it is very complicated. Dr Jardine gave the example that one could see that sort of reduction to 6% in different areas of preterm birth but, as an overall figure, absolutely not. I go back to saying that the reason why it is not possible is that we are not implementing guidance that is currently available. It is as simple as that. It would be really good to understand the causes a lot more—in due course, we absolutely should—but we cannot even implement the Saving Babies’ Lives Care Bundle, which is out there. We need to start with the guidance that is there. The fact that it is not being implemented is why we are not going to reach that target.
Kath Abrahams: I agree entirely.
David Badcock: I agree. The big problem is that we do not understand enough and we need to understand this much better; that is why we need more research. Until we understand the problem, we cannot do enough about it; that is what we want to see.
Baroness Watkins of Tavistock: I think you are giving us slightly mixed messages. You are saying that there is clear evidence out there that, if it were implemented, it would make this better. Surely one of your messages is that we must make very clear in our report that the knowledge we already have needs to be implemented.
Clea Harmer: That is definitely what I would say—absolutely.
The Chair: What would be the mechanism for doing that?
Clea Harmer: It is about supporting government to make sure that the staff are available. I know that talking about finances and staffing is never popular but, at the moment, the retention rate is incredibly poor, especially for midwives. Without the staff, they do not have the time to lift their heads up and see what needs to be done to give that compassionate care. With preterm birth, again, a lot of this is about communication and listening to parents. In December, we launched the Listening Project. Beside the MBRRACE report about the experiences of black and Asian women, we did a report looking at them; one of the key messages was that they were not listened to or communicated with clearly.
The Chair: The MBRRACE report highlighted that.
Clea Harmer: Yes, but our Listening Project had the voices of women beside it.
Q22 Baroness Watkins of Tavistock: My question is again about ethnic groups and socioeconomic backgrounds. You have answered on those but the aspect that I would really like to push now is geography. It strikes me that, in some parts of the country, you can go into early labour and get in an ambulance only to be taken to a local hospital that does not have a neonatal unit. Now, we have seen significant change: if you think you have had a stroke, paramedics take you to a specific centre. Can you comment on whether, geographically, there is something really important there, given your areas of expertise in relation to people? We cannot stop husbands or partners taking people to the local hospital, but we could have better advice.
Clea Harmer: Absolutely. Here is one way to show that that works: in London, the London Ambulance Service had an absolute focus on taking babies pre 28 weeks to hospitals that had NICUs that could support them. Over a couple of years, it managed to change perceptions in the ambulance service about where people should be going, which was not necessarily the nearest hospital. As you will know, it is much safer to transfer a baby in utero than to try to do it afterwards, so there is a focus on getting the baby in utero to the right place to be born. If they can do that in London, you can absolutely do it elsewhere.
Q23 Baroness Watkins of Tavistock: That was the first geography-related question that came to mind, but my other question is also about geography. Do you, as charities, see differences across the country in access to different things? Obviously, we have just talked about mileage there.
Clea Harmer: Absolutely. We are UK-wide; the way we see people accessing services in, say, the Western Isles is completely different from in big urban centres. It is also about working with local communities both to understand how they would access care in an emergency and to empower those who are pregnant to see themselves in a category where, if they need to, they should access that kind of emergency support and care.
Baroness Watkins of Tavistock: So, the basis of this question is that you think preterm births and outcomes would be enhanced with a fairer geographical spread of access.
Clea Harmer: Yes.
Q24 Lord Winston: I have to declare my interest: I am a fellow and a member of the various academies and places that you are, Chair—more or less, I think, with one or two exceptions—as recorded in the register. I should add that I also chair the Genesis Research Trust; it has raised some £80 million over the years, mostly for research not into preterm birth entirely but certainly relating to that issue and into implantation. I currently have a funded research project looking at embryo metabolism. I have also published various books on pregnancy and birth for children, adults and, most importantly, adolescents—mostly by Dorling Kindersley but also by other publishers, including Penguin.
I would like to start with you, Mr Badcock. First, we have to congratulate you because there is no question that this is a big area that needs support, and you are trying to do that. The whole committee is very much behind that and wants to see it happen, so thank you for coming and for doing that. You have an opportunity to pitch at the moment because you are being recorded on television, which, as you might have noticed, could potentially be useful for any charity that is trying to raise money. If you had to choose one particular area where you have improved outcomes so far in this field, where would you wish to boast?
David Badcock: We have existed for only about 10 years so we are doing a lot of work on the early stages of research. Where we are making a difference is in our uterine mapping project, where we collect samples from women who are in labour, including preterm labour. We are now starting to analyse those samples to understand the processes.
Lord Winston: So you have had no results yet?
David Badcock: We are in phase 1 and are about to move into phase 2. We are in the feasibility stage at the moment.
Lord Winston: Have you funded any PhD students?
David Badcock: Yes.
Lord Winston: How many in total?
David Badcock: We have funded 11 PhD students.
Lord Winston: Complete PhD studentships? That is very impressive.
David Badcock: Yes. We partner with Action Medical Research, which is for children, and the MRC to fund studentships and PhD fellowships.
Lord Winston: Do you top them up?
David Badcock: Yes. We work in partnerships to do that.
Lord Winston: Clea, can I ask you where you stand?
Clea Harmer: Yes. Thank you for the opportunity. It is difficult to pin it down but using parents’ voices to improve care is what I am absolutely most proud of. We have done it to improve maternity care by publishing reports where parents’ voices are heard but, most importantly, through the perinatal mortality review, working with MBRRACE to make it mandatory for every baby’s death to be reviewed; that is since 2018-19, so it is not that long ago that we made it mandatory for parents to be included.
The other way in which we have improved bereavement care is the National Bereavement Care Pathway, whose nine standards are now in every single trust in England, bar one—I will not say which one, but we are talking to it—and in every health board in Scotland; we are also talking to Northern Ireland and Wales. Again, it is about using the voice of bereaved parents to say, “This is important to us. This is the kind of care that we would like”. To be able to improve both maternity safety and bereavement care with parents’ voices has felt like an enormous privilege, so thank you for the question.
Kath Abrahams: I would mention the QUiPP app. It is a clinical tool that analyses factors affecting the risk of preterm birth. It was developed by the Tommy's preterm birth surveillance clinic at St Thomas'. It measures things such as cervical length, history of preterm birth and foetal fibronectin levels. Fibronectin is a protein—obviously, you will know this—that is produced by babies’ cells and makes sure that the amniotic sac connects to the womb. If a mother is likely to have a preterm birth, levels of foetal fibronectin are detected in the vagina. It is a clinical decision tool that contributes to early detection and risk assessment. We are delighted that it has been embedded in a pathway called the Tommy’s pathway, which is being tested through an NIHR grant at the moment; we hope that in time that will be available to all hospital trusts. A key thing for us is making sure that the developments are available to everyone, so we are pleased with the development of the app but also with the fact that it is now going to be rolled out further through a clinical trial.
Q25 Lord Winston: Given that this is such an emotive area of medicine—I cannot think of many areas that are much more emotive—publicity is an advantage but also a problem. From time to time, exaggerated claims are made for all sorts of developments; unfortunately, that has certainly happened in this field. In fact, there is one charity—I will not mention it now—that, about two years ago, promoted some research about women not lying on their backs during pregnancy. It went viral; it was on television and in national broadcasting. As far as I am aware, the data was completely nonsensical. How do we make sure that proper information is given out, not simply because we want to promote charities that we are dealing with? We should understand its good intentions, but it does great harm as well. I wonder whether you might be kind enough to answer on that. Kath, what do you think?
Kath Abrahams: We are very focused on making sure that we use evidence-based information. For example, in the field of miscarriage, we have worked to make sure that the evidence produced through the Tommy’s National Centre for Miscarriage Research has gone through the NICE guidelines. Once they have been developed, we develop the patient-facing information. For us, it is really important to make sure that the information we give people is information that they can trust. You have to keep going back to the evidence and not use information that is not evidence-based, however tempting it might be.
Q26 The Chair: Coming back to Baroness Thornhill’s and Lord Winston’s questions, what are the key priority areas that you would like to be followed, in terms of research or otherwise, to help reduce preterm births?
Kath Abrahams: For us, it is about understanding more about the causes. Only 10% of preterm births are predictable, which means that an awful lot of preterm births are not. For us, it is about understanding more about why preterm birth happens so that we can prevent it. At the moment, a lot of the research is focused—for good reason, in some ways—on what happens after the baby is born. Clearly, some terrible outcomes happen.
The Chair: Within that, do you have a priority area? Obviously, Borne has one—if I am wrong, please say so in a minute.
Kath Abrahams: We are looking at a range of things. The broad theme that I would focus on is making sure that we understand more about inequities, because there is so much inequality in preterm birth. I would focus on understanding why some people are more susceptible.
The Chair: Let me be a bit more challenging. Let us say that I am UKRI and have £10 million to give to four key research areas in the prevention of preterm birth. What would be your four areas for me to give £10 million to?
Kath Abrahams: I would want to focus on understanding why inequalities happen; that would be absolutely key.
Lord Winston: That is not medical research.
Kath Abrahams: Investigating the genetics would be medical research.
Lord Winston: Why have you not linked to the available genetic registers? Perhaps you have.
Kath Abrahams: That is what we are beginning to do through the centre. It is our hope for when the centre launches; we have a number of projects. We are looking at working with Genomics England on that as well.
David Badcock: I talked about the uterine mapping project. As Kath said, understanding why women go into labour early is one of the key things, as is being able to identify that. We would like to develop screening techniques to be able to screen many more women much earlier in pregnancy. I appreciate that there are lots of considerations around that but we would like to see more women being identified as at a high risk of preterm birth, not just once they have had an early baby.
Q27 Baroness Cumberlege: I would like the three of you to reply individually on this. I have been thinking a lot about the research that you all know about and are probably carrying out. It seems to me that it is so important to get that research into policy. As parliamentarians, we are very interested in policy. Are there any quick wins on that? Are there ways in which we can ensure that this research, which is so valuable, is not just talked about but implemented in local places and, more importantly, communicated to people like us—policymakers?
Kath Abrahams: I am happy to start on that. We feel strongly that, if we just do the research and it does not have an impact, it is a waste of some good research. As part of the new centre that we are launching, we will host a policy laboratory at the end of May. The idea is to bring together people from government and the NHS, researchers, parents and all interested parties; we would love to have somebody from the committee join us at that event. The idea behind it is to look at answering the question of how we translate policy into practice more quickly. We want to use the answers that we come up with to make sure that we are doing this translation and working with all the relevant parties. This is critical because, otherwise, we will not make the difference that we need to make.
Baroness Cumberlege: I agree.
The Chair: “Good luck” is what I would say to that, but there we are. Having a policy committee that might help us embed issues into policy is a good idea but the point made by Sands is important: you need the public to make the case for you. At the end of the day, this issue relates to the public—mothers and babies.
Clea Harmer: If I were allowed some research priorities, one would absolutely be placental pathology—it is so overlooked. Another would be finding biomarkers that help to put women on the right track. I would also like to do a lot more around infection. Covid has been mentioned but other forms of infection were not when we talked about causality; that is especially crucial for neonatal death so I would definitely look at it. Another priority would be behavioural research. Smoking is a big thing for me. Why can we not help more women? It is not a choice but an addiction. How can we help them?
Going back to Baroness Cumberlege’s question, I know that targets are not always good and can drive the wrong behaviour, such as with A&E and waiting times, but you can hold a Government’s feet to the fire with targets. We need some targets around really simple things, such as the Saving Babies’ Lives Care Bundle. Why is it not being implemented? Why is there not delayed cord clamping everywhere? Why are babies not being born in a centre with a NICU?
The Chair: That goes back to the important point you made, which has come home to us all: if what we know makes a difference were implemented, it would lead to better outcomes for thousands of mothers and babies, but it is not. This includes late cord clamping; that evidence clearly exists now but it is obviously not being done.
Q28 Baroness Thornhill: I want to pick up on what was just said and press you on a part of my earlier question—you had a lot to say on the other part of it. Is there a role for the inspection regime in all of this? Ofsted was transformational for children with special educational needs many decades ago. In your opinion, is there a role for the CQC in measuring targets?
Clea Harmer: There is absolutely a role for the CQC. We have to be really careful. Now I will regret mentioning targets. Targets for Governments are good but, sometimes, CQC inspections drive anxious behaviour. The culture of making sure that you get a good outcome can be questionable.
However, what is really important for the CQC is that everybody’s voices are heard. At the moment, patients are asked for feedback but bereaved parents are not because it is thought to be too upsetting to ask them what their experience has been like. No one would want to say, “Would you recommend this hospital for your baby to die in?”
However, if you are a bereaved parent, you want your voice to be heard. Everybody finds it such a difficult subject that they back away. They need to come to organisations such as Sands; we will write those questionnaires for them so that, when you evaluate a service, you get everybody’s view of the care that has been given.
The Chair: Thank you. Targets are difficult to set, particularly if you do not have the data on individual hospitals’ preterm birth rates, so it is difficult even for the CQC—but I take your point. We will have a last question from Baroness Watkins.
Q29 Baroness Watkins of Tavistock: I want to turn this on its head a bit because of what I have been hearing, particularly about the delayed cord clamping. I was always told to do it straightaway. People have to unlearn things, which is quite difficult for them to do. What responsibility do you think hospital boards have to ensure that medical nursing and midwifery directors see that the evidence is put into practice in their own local areas?
Clea Harmer: They have an enormous responsibility. In fact, the joint policy unit that Sands and Tommy’s run together has just produced a paper showing that boards are overwhelmed by information papers for meetings that they do not have enough time to read or understand, so their concept of what is happening at the head of midwifery or clinical director level is literally on the ground.
The Chair: Is it the board’s responsibility to tell the clinicians when to clamp the cord?
Clea Harmer: No, but the board has the responsibility and accountability for whether safe care is being provided and whether the guidelines are being followed. If the guideline is called “Clamping”, they are responsible for making sure that that is being implemented.
The Chair: Thank you. I thank all three of you for helping us with our inquiry today. It has been very helpful.
Baroness Thornhill: This has been a really good session. Thank you.