Stillbirth

Wednesday 18th May 2011 Westminster Hall

11:00

[Chris Heaton-Harris (Daventry) (Con)]

It is a pleasure to serve under your chairmanship, Mr Crausby. I have never been in this situation before, so I hope that you will treat me gently in the course of the next half an hour.

I am grateful to have the opportunity to raise this important issue in Westminster Hall. Stillbirth is a sensitive, painful subject that has a lasting effect on thousands of people each year, and I am not convinced that enough is being done to support the families of stillborn children. I am concerned that the UK seems to be failing to reduce the number of stillbirths that we have each year.

A few years ago, a couple who are good friends of mine were joyfully awaiting the birth of their second child. The mother had what can only be described as a normal pregnancy. When the baby was full term, she had some intense pain in her stomach and decided that it would be wise to head to the hospital. Rather than being admitted, she was sent home. When she returned a day or so later, she was told that the baby she had been carrying had died.

Who knows what might have been different, had the circumstances a day or so previously been different? That is not the point of this debate, but what happened then made up my mind that, should I ever be elected to this place, I would do my best to ensure that, in future, no parents would have to suffer the same fate as my friends. Unfortunately, due to staffing problems, the couple were sent home on that day, with the deceased baby still inside the mother. They were asked to return after the weekend for the delivery of their son.

Clearly, that is not an acceptable or humane way to treat someone who has received the worst of all news. It was, and still is, impossible for any of us here to know or have the slightest clue about what my friends were feeling at that time, and what so many parents like them go through each day. It is not a small number of families who go through this. Recent research shows that 11 babies are stillborn every day in the United Kingdom, averaging out as one in every 200 babies born, or 4,100 babies a year.

Some parents I have spoken to have had only the nicest things to say about how they were treated following the stillbirth of their child. Others have stories that are not so good, which is why I have been trying to secure this debate for months. I want to impress on the Minister, whom I know is very sympathetic, the need to help spread best practice across the health service when it comes to stillbirth. Sands, the stillbirth and neonatal death charity, has developed comprehensive guidelines for professionals. However, I am not confident that that best practice is used across the whole of the NHS.

I acknowledge completely that we have come a long way in how we deal with stillbirth. There is a lady in the Public Gallery here today, Angela, who has, alas, experienced some of the worst of what used to happen not so many years ago. She created a group, I Have Rights Too, to help other parents after her baby, Natasha, was born and passed away almost immediately. Born a Catholic, Natasha was denied the last rites, and her parents were not allowed to hold her. At least one of her organs was removed without her parents’ knowledge, and she was buried in a mass grave. That is what some would call a legacy case, and I would appreciate it if one of the Minister’s officials helped Angela finally to get the answers she needs as a mother, in order to come to terms with what happened a few years ago.

Some of the things that happened to Natasha no longer happen. The Human Tissue Act 2004, the Human Tissue Authority Codes of Practice (2006), which apply in England, Wales and Northern Ireland, and the Human Tissue (Scotland) Act 2006, which applies in Scotland, mean that parental consent is required before any organs are removed from a stillborn baby. In most cases now, funeral arrangements for a stillborn baby are a matter of decision for the parents, or by the relevant health or local authority if the parents are unable to meet the cost. However, public graves for the interment of stillborn and young babies remain to this day in some areas.

Another matter that causes great anxiety to parents who have a stillborn child is certification. Parents I have been in contact with have been very distressed that they cannot legally register the birth of a baby born before 24 weeks who did not breathe or show any signs of life. While I understand that some parents would be distressed at the possibility of having to do that, I wonder whether we could have a more flexible system whereby parents have the choice of a formal birth certificate, a local certificate issued by the hospital or—if they chose it—nothing. In modern society, I believe we have the ability and sensibility to deal with the matter of certification, which is very important to most of the parents I have spoken to, because it is a simple process of formally naming their deceased baby.

Parents should be actively encouraged to see, hold and care for their stillborn child. From all the various examples I have heard, while heartbreaking at the time, it seems to help parents come to terms with their loss much quicker than they would otherwise have done. One of my correspondents on this subject has suggested that where parents do not wish to do that—with the emotions running through them at the time, some parents feel confused and do not know how to deal with these matters—staff should take photos of the baby while it is being washed and dressed, so that, should the parents change their mind at a later date, pictures of their child are available.

Without a doubt, the hardest thing for anyone to do when a family member passes away is to say goodbye. Saying goodbye in these circumstances should be done in the parents’ own time and in their own way, and they really should have expert support to help them decide what is best for them. Leaving the hospital, without the baby the parents expected to be taking home, is a terrible thing for anyone to go through. From what I gather, most maternity units now deal with this in a professional and responsible fashion, and should be commended for the way they handle this circumstance. Invariably, in the weeks after a stillbirth, the parents have to go back to the hospital where their baby was delivered for check-ups and medical tests. Many parents have suggested to me that more consideration should be given to subsequent hospital visits, and that space for those appointments should be made available away from the maternity unit. Quite often, parents have to go back to the place where they have just had such a distressing occurrence.

I would like to thank Melanie Scott, whose son, Finley, was stillborn, and who received a lot of quality support. She has written a book about her experience, and feels that the support she received allowed her and her family to heal at the time, and to continue to heal. She now helps other families who have had the same experience.

Finally, I would like to come back to the issue of the number of stillbirths that occur each year. As I mentioned earlier, more than 4,100 babies a year are stillborn; that is 11 a day. That number is simply too high. I have been told that approximately 30% of stillbirths remain unexplained, and that various factors play into the deaths of the remaining 70% of those babies. I know that the Minister is concerned that the UK is slipping down the league table. According to a recent study in The Lancet, the UK has one of the worst records for stillbirths, ranking 33rd out of 35 high-income nations. While it is important to acknowledge that all women are vulnerable, we need to work out why the women in our nation may be at a higher risk of stillbirth, and what we can do to change that fact. There are some troubling regional differences in the percentage rates of stillbirth across the UK. How can we explain the 33% difference between the south-west, with the lowest rates, and the east midlands, of which my constituency is a part, which has the highest rates?

I have had discussions with people who point out that in recent years, Britain has become one of the unhealthiest nations in Europe. We are the most obese nation in Europe, and we are the heaviest drinkers. As life expectancy has increased, more British women are waiting until later in life to become first-time mothers. Those could all be contributing factors to the horrid statistic of 11 stillbirths a day.

What research has been done into the reasons behind our high stillbirth rate? Why is there so much regional variation? More than anything, I want the Minister to assure me and the House that the Government have an ongoing commitment to reducing the number of stillborn children throughout the United Kingdom, and that he will do his best to ensure that best practice, which does exist, gets spread through the whole NHS, so that eventually, fewer parents need suffer this terrible fate.

11:10

[The Minister of State, Department of Health (Mr Simon Burns)]

It is a pleasure to serve under your chairmanship, Mr Crausby.

I congratulate my hon. Friend the Member for Daventry (Chris Heaton-Harris) on securing this important debate and on the sensitive way in which he commented on a deeply distressing set of circumstances that, sadly, affect far too many families in this country. My hon. Friend has an active interest in this area, with his support both for his constituents who have suffered the tragedy of stillbirth and for the I Have Rights Too campaign, to which he alluded.

My hon. Friend asked for help from Department officials in an individual case. If he is kind enough to contact me with further details, I will be more than happy to ask my officials to look into what could be done to help. I cannot prejudge what might happen—there are too many unknown quantities—but he has my assurance that we will see whether there is anything we can do to help. I would certainly like to provide help if that is humanly possible.

For most people, having a baby is the most profound and important event of their lives. It is a time to make plans and look forward to a future with all the joys that having a child can bring. To lose a baby, at birth or shortly afterwards, is devastating for parents and the wider family. Anyone who has been fortunate enough not to have undergone such a tragic circumstance cannot fully appreciate the depth of devastation and despair of such a family; nothing could be worse in family life.

It is important for parents who have lost a baby to receive immediate and ongoing support and information at a time that is appropriate for their needs. Parents might find it helpful to talk to their GP or community midwife who, as well as providing support, can provide advice on the bereavement and counselling services available locally, such as those provided by specialist bereavement-support midwives.

To support the NHS in the provision of such services, in 2008 the Royal College of Obstetricians and Gynaecologists published “Standards for Maternity Care”, which sets out clear standards for the levels of care that should be provided to help patients and families whose baby is stillborn or dies shortly after birth. Comprehensive guidelines for professionals, on “Pregnancy Loss and the Death of a Baby” have been developed by Sands—the Stillbirth and Neonatal Death Charity. For parents, the pregnancy care planner on the NHS Choices website provides information on stillbirth, to complement information provided locally, and signposts other sources of help, including Sands, which I hope individuals find helpful at what is a difficult time.

Forms and certificates are often greatly valued by parents as a way to acknowledge and commemorate the life of their baby. The Births and Deaths Registration Act 1953, as amended, provides for the registration of babies born dead after 24 weeks’ gestation, which is the legal age of viability. A certificate of registration and a certificate for burial or cremation are issued.

Parliament supported a change to the stillbirth definition from “after 28 weeks” to “after 24 weeks” in 1992, given a clear consensus in the medical profession at that time that the age at which a foetus is considered viable should be changed. The medical certificate of stillbirth records the name of the mother and details such as the weight, the estimated duration of pregnancy and when the child died—before labour or during labour—as well as the cause of death and whether a post-mortem has been or might be carried out.

Some parents find it deeply distressing that they cannot legally register the birth of a baby born before 24 weeks, as my hon. Friend mentioned; the definition involves a baby born before 24 weeks who did not breathe or show any signs of life. However, it is important to recognise that some parents would be distressed at the possibility of having to do so. When a baby is born dead before 24 weeks’ gestation, hospitals may issue a local certificate to commemorate the baby’s birth.

The devastating effect of any stillbirth cannot be overestimated, and we recognise the distress that parents might face when having to deal with the further impact of a post-mortem examination. The Human Tissue Act 2004, which applies in England, Wales and Northern Ireland, established the Human Tissue Authority to regulate the removal, storage, use and disposal of any body parts, organs and tissue. Consent is the fundamental principle underpinning the Act.

The HTA has issued codes of practice that provide practical guidance and lay down expected standards in relation to activities within its remit, such as the carrying out of a post-mortem examination. The code on post-mortem examination recognises the particular difficulties involved when pregnancy loss or stillbirth has occurred, and emphasises the need for sensitive communication and the provision of further advice and guidance for parents when necessary. That is especially important when the pathology results have implications for future pregnancies.

The funeral arrangements for a stillborn child are a matter for the parents, or for the relevant health or local authority if the parents are unable to meet the costs. Individual local authorities decide what burial facilities to offer, but public graves for the interment of stillborn and young babies remain in some areas. In many cases, sections of the cemeteries may be set aside for the burial of babies, and that can provide some comfort for bereaved parents. Whatever arrangements are made, we expect them to be provided with dignity and sensitivity.

I turn to the UK’s record. My hon. Friend made a number of valid points. He alluded to a recent series on stillbirth in The Lancet, which ranked the UK stillbirth rate 33rd worldwide, below many other high-income countries. Since 1999, there has been a small reduction in the stillbirth rate for England—from 5.3 per 1,000 total births, to 5.2 in 2009. However, over the past 50 years the rate has declined significantly; for example, in 1960 the figure for England and Wales was 19.8.

Historically, there has been a step in the right direction, but I fully understand the validity of my hon. Friend’s point: even if the rate has declined in the past 10 years, the difference is marginal, suggesting that considerable work has still to be done to bring the rate down further and to minimise the number of occasions on which families have such a traumatic experience. The Government want to improve health outcomes, which is a key focus of our NHS reforms. We have made the reduction of perinatal mortality, including stillbirth, an improvement area under domain 1 of the NHS outcomes framework for 2011-12.

What can be done to reduce the risk of stillbirth? First, every unexpected death of a baby should be investigated. The National Patient Safety Agency has published a pro forma for the review of intrapartum-related perinatal deaths, for use by health professionals, and it may also be used for the review of all perinatal deaths. The aim is to find any avoidable factors, to identify any lessons to be learned, and then to develop and disseminate an action plan to deal with issues arising from the information. Secondly, it is imperative that we continue to drive forward improvements in maternity and new-born services, so that all women and their children have access to safe, high-quality and locally led care.

In recent years, there have been encouraging improvements in antenatal care. The Care Quality Commission’s survey of women’s experiences of maternity services was published in December 2010, and found that 92% of women rated their maternity care as good or better. We should be proud of that, but more can be done and needs to be done to improve care during pregnancy, labour, birth and the postnatal period. It is important that women access maternity services at an early stage; we believe that that is one of the most fundamental characteristics of high-quality maternity care. We therefore included the maternity 12-week early access indicator as one of the measures for quality in the NHS operating framework for 2011-12.

Encouraging early access to maternity services will enable women who can be identified as being at increased risk of stillbirth to receive additional support and monitoring. The National Institute for Health and Clinical Excellence will develop new quality standards on antenatal care, the management and care of women in labour and delivery, and postnatal care. Based on the best available evidence, the standards will play a key role in the Government’s vision of an NHS focused on improving outcomes for patients.

We believe that there should be more accountability within the NHS, and the outcomes framework will be used to hold the NHS to account for the outcomes that it delivers through commissioning health services from 2012-13. We also believe that the availability of a full range of services, as close to home as possible, is fundamental to safe, high-quality maternity care. To help to achieve that, we have made extending choice in maternity services a key priority for the NHS. Maternity provider networks will help to make safe, informed choice throughout pregnancy and in childbirth a reality, and will facilitate movement between the different services.

I am pleased to announce that my hon. Friend the Under-Secretary for Public Health plans to host a meeting on stillbirth later this year. It will consider the issues in more detail and consider what more can be done to help reduce the number of stillborn babies and provide an opportunity for all pregnant women to receive accurate and timely advice on risk factors and simple measures to reduce risk—for example, stopping smoking.

Pregnancy is a vital time for health promotion. Parents are motivated to do the best for their children, so they are particularly receptive to information and advice. That means that maternity services, when delivered well and with a holistic approach, can help to tackle some of the biggest public health issues facing us as a nation, to do with nutrition, physical activity and health inequalities—not just for infants and children, but for all of us.

My hon. Friend asked about research in the Department and the NHS, and I shall briefly address that issue. First, the Department of Health continues to invest in research in this important area. The Department’s National Institute for Health Research in Cambridge has an ongoing programme to look at women’s health. A major focus of that research is understanding the factors linked to stillbirth, and to use that information to improve the clinical care of pregnant women. I hope that that goes some way to reassure my hon. Friend that research is ongoing and that we take the issue extremely seriously because of the implications and level of the problem in this country, given its high income and standard of living compared with other nations around the world. We can do better, and we must do better.

I want to speak about another issue that my hon. Friend did not raise specifically, but I hope that he will find it useful in the context of this debate. Financial support is of great importance to families who may have a financial problem when they suffer the devastation of a stillbirth or early birth. Information on financial support is made available through the “Money made clear” leaflet on

“Late miscarriage, stillbirth and neonatal death: financial help available”.

It collates the information that parents may need from a range of cross-Government organisations and the voluntary sector. The leaflet contains information on whether, following late miscarriage, stillbirth or neonatal death, parents are eligible to receive free prescriptions and dental treatment, Healthy Start free vitamins and vouchers, statutory maternity pay, maternity allowance, statutory paternity pay, child benefit, the child trust fund and child tax credit.

That document is easily accessible in its format, so people do not have to be referred from pillar to post to find information and answers to questions that may be relevant to them, or uppermost in their minds when seeking a solution. It is worth putting that on the record so that people have an opportunity, when it is applicable or when they are suffering difficult financial circumstances, to be able easily to ascertain where and what they may do to access help at what is always a difficult time.

I conclude by thanking my hon. Friend for calling this debate. The issue is important simply because of the utter devastation, despair and misery that it causes to far too many families in this country. We take it extremely seriously, as I hope my hon. Friend recognises from the activities and actions that I have outlined and that the Department of Health and the NHS are pursuing. We continue to give the matter the highest priority, because we must do more to help families who face such a devastating and terrible loss.

11:27

Sitting suspended.