Baby Loss Awareness Week

Part of the debate – in the House of Commons at 8:07 pm on 9th October 2018.

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Photo of Patricia Gibson Patricia Gibson Shadow SNP Spokesperson (Consumer Affairs) 8:07 pm, 9th October 2018

I want to begin by echoing the words of Victoria Prentis, who is no longer in her place, that this is indeed one of the most difficult debates—if not the most difficult, debate—in the entire parliamentary calendar. It must be debated because it is too important for us not to. A number of my colleagues would have dearly liked to participate in this debate today, but, sadly, our conference is not accommodated in the recesses of Parliament, so therefore they were unable to be here.

As Will Quince has pointed out, this is the third year that we have made a special effort in this House to mark Baby Loss Awareness Week, which culminates in International Pregnancy and Infant Loss Remembrance Day 2018 on 15 October. In a cruel twist of fate, sadly, that is the same date that my own baby was stillborn at full term in 2009. Kenneth would have celebrated his ninth birthday on that day. It is in his honour that I began to talk and to campaign—and will continue to talk and continue to campaign—about this issue. I want to shine a light on it to break the taboo around it and to break the silence that we all know exists and that we are all working to change.

I want to thank my fellow members of the all-party group—the hon. Members for Colchester, for Eddisbury (Antoinette Sandbach) and for Banbury. As a Scottish member of that group, I like to think that I am able to provide a Scottish perspective. Health in Scotland is devolved, but on this issue, as in all issues, I believe that where we can work together and learn from each other then we most certainly should do so, because this issue is certainly above politics. I also want to thank all those across the House who have championed the issue of baby loss and shared their personal and painful experiences and circumstances, as well as the charities that work on the frontline every single day, helping bereaved parents through this life-changing and traumatic event, as the hon. Member for Eddisbury reminded us and others in this debate have pointed out.

It is important for all the parents, grandparents, aunts, uncles, brothers and sisters who have been affected by such an appalling tragedy as baby loss to know that even though they feel isolated in their grief, they are not alone. Sadly, the tragedy of baby loss and stillbirth is terrifyingly common, with around 6,500 babies dying before or shortly after birth—one baby every hour and a half. During this debate, two babies have died. Some 4,000 of these 6,500 babies are stillborn, with another 2,500 surviving for less than a month after birth.

We are all working to the same end in this House and across the UK—to reduce these terrible statistics. Behind each one is a family devastated by grief, living under the shadow of the pain of this for the rest of their lives, while appearing to function normally on the surface, because the grief of losing a baby and all the hope invested therein does not go away. Families and parents simply find a way to learn to live with it somehow. However, I am pleased to say that progress is being made. The hon. Member for Colchester made a good point about back-slapping, but I do think that we have to acknowledge it when we make progress.

Although we are not yet there, Scotland is now close to the high standard set by Nordic nations in minimising stillbirths and early infant deaths. I was very pleased to read that, according to a University of Leicester study, rates have fallen across the entire UK, with Scotland leading the way, although of course there can be no room for complacency. The rate of stillbirths and deaths of babies within 28 days in Scotland was 4.72 per 1,000 live births in 2017, which compares with the Nordic rate of 4.3. Probably everybody here who has an interest in these matters—I think that we all do—will know that Norway, Sweden, Denmark, Finland and Iceland are generally regarded as having the gold standard in neonatal survival. The 2015 rate of stillbirths and deaths of babies within 28 days of birth for the entire UK was 5.61 per 1,000 live births—a drop from 6.04 in 2013. So, yes, improvement has been made, but this is not job done; far from it. Nevertheless, it is extremely welcome progress. Prevention is, and absolutely must remain, the key.

Mary Ross-Davie, director of the Royal College of Midwives in Scotland, has said that in recent years Scotland has undertaken very important work in this area that has improved outcomes for Scotland, with the national stillbirth group established in 2013. In addition, we have had the Maternity and Children Quality Improvement Collaborative since that time. Moreover—as we have heard about today with regard to England—the Scottish Government have funded the national bereavement care pathway, which will benefit bereaved parents across Scotland. I think that this is being rolled out in parallel with the care pathway in England.

The pathway is important because it seeks to improve the quality of bereavement care experienced by parents and families at all stages of pregnancy and baby loss, so that all bereaved parents across the UK can expect the same high-quality, sensitive bereavement care that they need and deserve. It is still in the process of being established, and it will involve collaboration and partnership with baby loss charities and stakeholders, and so it should. The stillbirth and neonatal death charity, Sands, is working with—and will continue to work with—the Scottish Government, other baby loss charities and other healthcare partners in Scotland to develop the approach over the next two years, with the plan to pilot, implement and embed the pathway across Scotland by March 2020.

When the worst happens and parents must face this nightmare, it is important that the correct support mechanisms are in place. That is the least that can be done, but sadly this was not always the case in the past, when bereavement care experienced by parents and families during pregnancy or shortly after birth could be patchy and variable, as the hon. Member for Banbury pointed out and to which I can personally testify. Support and the right kind of care in the immediate aftermath of such a life-changing event can make all the difference to those affected, as we heard from the hon. Member for Eddisbury.

I have lobbied the Scottish Government, who are now also investigating the provision of fatal accident inquiries for stillbirths in some circumstances, as was mentioned earlier. This is another mark of how far we have come and it is a huge step. Nobody should underestimate the complexity of this step forward—of the fact that the issue is even under discussion and investigation. It is also being explored by the Department of Health in England.

Currently, until a baby lives independently of its mother, any change in the law here would be profound and require the law around it to be looked at very carefully. Of course, no one would expect a fatal accident inquiry—in England, a coroner’s inquiry—to be carried out routinely following a stillbirth, although it may be appropriate in very specific circumstances, not as a way of seeking to punish anyone who may have made mistakes, but as a learning tool to greater inform medical practitioners as they carry out and seek to improve antenatal care. The only reason that this idea has even been raised at all is that in the past many hospitals have been extremely reluctant to investigate stillbirths fully and transparently. Parents often report feeling excluded from the process and denied proper answers to the question, “Why did our baby die?” We know that sometimes it is not possible to answer that question; sometimes we just do not know. But when explanations or information can be given, so it should be. Any relevant information needs to be shared with bereaved parents. The fact that it has not been in the past is not good enough and it is hoped that the bereavement care pathway and a more transparent ethos around baby loss will help to address these issues.

Of course, we could not measure progress and the support that parents and families can access without mentioning the Parental Bereavement (Leave and Pay) Act 2018, which we heard about earlier in the debate. This legislation means that, for the first time ever, bereaved parents who lose a child up to the age of 18 years old are entitled to statutory paid leave under the law. Parents who go through a stillbirth are also protected.

An age-old wrong has been corrected in this legislation. The law has rightly recognised the enormity of losing a child and the protection in the workplace that parents should be entitled to expect as a right, not as a gift conferred on them by their employer. I thank everyone in the House with whom I had the privilege to work alongside on this legislation, particularly Kevin Hollinrake, whose approach was sensitive and reflective; for that, I think we all thank him. The Act is not perfect, but it is ground-breaking and I am sure that it will evolve over time.

Another measure that will help with baby loss is the move in England to permit the registration of babies lost before 24 weeks’ gestation. The Scottish Government are also actively looking at this with input from professionals in the field and baby loss charities, examining the current system, its effects and how a potential voluntary registration process or other kind of process could work in practice. Certainly, parents who lose their baby before the 24-week threshold—when it is classified as a miscarriage, rather than a stillbirth—often feel that their loss is dismissed, officially at least, because there is no documentation to testify to the fact that their baby existed, was eagerly awaited and that their loss has left a lasting impact on the entire family.

In such cases, the opportunity to register their baby’s death may provide many parents with some comfort at an extraordinarily difficult time. For that, if nothing else, such a provision must be seriously examined. We are all mindful of cases we have heard about whereby twins are lost—one before the 24-week threshold and the other after it—but only one baby is eligible for registration. Imagine being the parents going through that. It is not hard to see how much worse that makes parents and families feel. That is something that we are looking at in both England and Scotland—it is something that we should look at, and it is time that we did so. All that can be done to ease the trauma of losing a child must be done.

The speech that I have delivered today on this issue is, thankfully, more optimistic than previous speeches that I have delivered on it. Progress has been made, and I am delighted about that. Slowly—very slowly, but we are getting there—we are beginning to break the taboo on this issue, which demands that we move forward. We have come some way, but there is still much to do, and the hon. Member for Eddisbury pointed out some sobering examples in England and Wales. According to Embrace, 15 babies are stillborn or die within the first 28 days of life, and 80% of stillbirths and deaths that are investigated could have been avoided with better care. We can and must do better, and progress in recent years shows that we are capable of doing so. For my part, as a Scottish MP, I will continue to communicate with the Scottish Government and maintain a dialogue on this matter. I will also work with the all-party parliamentary group on baby loss.

We have discussed the emotional trauma of baby loss, but we should remember that there is also a social cost. Parents who lose a child, whatever the circumstances, are eight times more likely than their counterparts to divorce. They are more likely to drop out of the workforce, perhaps never to return. We have to do everything that we can to support parents in this position. The former Cabinet Secretary for Health and Sport, Shona Robison MSP, was receptive to concerns that I raised with her. Her successor, Jeane Freeman MSP, has continued very much in the same vein. I very much look forward to next year and continuing to work to challenge the silence, taboo and difficulties surrounding baby loss and neonatal death. Cross-party work has never been so constructive, I suspect, and on an issue that we all care about and which impacts all too often on too many families in every single constituency across the United Kingdom. We have a duty to work together, we have a duty to make things better, and we have a duty to break the silence.