Baby Loss Awareness Week

Will Quince Excerpts

Tuesday 9th October 2018 Commons Chamber

[Will Quince (Colchester) (Con)]

It is a pleasure to follow the hon. Member for Coatbridge, Chryston and Bellshill (Hugh Gaffney); I am pleased to say that his is one of the Scottish constituencies that I do not have a problem pronouncing. I should also like to thank all the previous speakers, particularly the hon. Member for Ceredigion (Ben Lake). He and the hon. Member for Coatbridge, Chryston and Bellshill have shown the importance of hearing men’s voices in the Baby Loss Awareness Week debate. I particularly want to thank the Backbench Business Committee for allowing the time for this debate, and my hon. Friend the Member for Eddisbury (Antoinette Sandbach), the co-chair of the all-party parliamentary group, for securing this important debate for the third year running.

In November 2015, when I was a relatively newly elected MP, I remember coming back after the recess and putting in for an end-of-day Adjournment debate. Based on my own experience, I thought we should have a debate on bereavement care in maternity units. Little did I think that we would have made such progress in just over three years. We now have the all-party parliamentary group, and we are in our third year of marking Baby Loss Awareness Week here in Parliament. That demonstrates the power of this place when we put aside the squabbling and party political differences and work together with a clear aim. It is clear that we are united and speak with one voice when we say that we are committed to reducing stillbirths and neonatal deaths—I include miscarriage in that description. We are also committed to ensuring that we have world-class bereavement care right across our world-class NHS for those who go through the huge personal tragedy of losing a child.

This is a particularly important and poignant week for me and my family, because it is four years ago this week that we lost our son, Robert. We will be marking his birthday on Friday, when he would have been four years old. On Sunday, my two daughters and I picked out the birthday cake that we will be sharing. Sadly, we are just one of the families who are going through this experience week in and week out, up and down our country.

We should not underestimate the importance of talking about baby loss. This is why debates such as these are so important and powerful. Totally wrongly, baby loss is a massively taboo subject. We have made huge efforts over the past three and a half years to try to break the silence and the taboo by working with charities, organisations and health professionals, but the taboo still exists. It exists because we do not like talking about death, full stop, and particularly about the death of children or babies. It is important that we talk about it, however, because that little baby was a huge part of somebody’s life. It is part of their story and their journey, and to ignore it can cause irreparable issues.

We must use the power of Parliament to break that taboo and talk about the issue, rather than crossing the street and avoiding someone who has suffered a stillbirth, miscarriage or neonatal death. We should talk to them about it. We should ask about their child and refer to them by their name, because people do want to talk. If they do not want to talk, they will tell us. It is really important that they should not be ignored.

[Richard Graham (Gloucester) (Con)]

I am so impressed by the work of the all-party parliamentary group. I rang my sister, who lost a baby a long time ago, to ask her what she would say if she were here. She asked me to encourage hon. Members to ensure that two things are available in hospitals. First, there should be someone practical to give advice on issues such as burials. The second, more important, thing was to have someone who can give emotional support to people who are in a moment of crisis and panic, and she felt strongly that in today’s era such services should be multi-faith and no faith. The chaplain’s offices in our Gloucestershire Royal Hospital can do that.

I should also like to mention a male constituent of mine who said that there had been a lot of support for his wife when they lost a child, but there had been no male support group. What does my hon. Friend think of those suggestions?

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[Will Quince]

I thank my hon. Friend for raising those very good points, which are entirely valid. His points about support, both in hospital and post-hospital, and about the support available to fathers, are very important and I shall come on to them in a moment.

Just before we move on to the debate proper, I want to talk a bit about my right hon. Friend the Member for South West Surrey (Mr Hunt), because we have not had a chance since his elevation to the position of Foreign Secretary to praise him for the work he did on these matters when he was Health Secretary. From the beginning, we also felt supported by Ben Gummer—I think I am allowed to call him that now, as he is the former Member for Ipswich; he encouraged us to set up the all-party parliamentary group. However, the former Health and Social Care Secretary, now Foreign Secretary, could not have been more supportive, and we felt from the very beginning that we were pushing against an open door. He knew that the issue needed to be addressed, and he threw the full weight of the Department behind it. I thank him on the behalf of the APPG, and I know that all the charities feel the same way. He was hugely supportive and continues to be so.

We produced a video for Baby Loss Awareness Week, which is live now, and my right hon. Friend features in it, showing how passionate he is about tackling this issue. I also want to say how much the rest of the APPG and I are looking forward to working with the new Secretary of State for Health and Social Care, my right hon. Friend the Member for West Suffolk (Matt Hancock), who has already reached out to me and other members of the APPG, as have his special advisers, to continue that work, which they recognise is important.

Several colleagues have already referenced the hugely important work done by charities up and down the country. That includes both big charities such as Sands, which is marking its 40th anniversary this year, the Lullaby Trust, the Mariposa Trust, Tamba and so many others and small charities that provide support locally. The support that they provide to parents at the most difficult time in their lives is so valuable, and I thank everyone who works in and volunteers for those charities.

[Lilian Greenwood]

The hon. Gentleman is making a powerful contribution, as he always does, and I congratulate him and all the members of the APPG on their work. Will he join me in congratulating a local Nottinghamshire charity called Forever Stars? Not only is it doing fantastic work supporting parents who have lost a child, but it has managed to raise £300,000 to create two new bereavement suites at the two Nottingham hospitals over the past year. I know that that has already been touched on in the debate, but it makes such a difference to parents who have experienced the loss of a child when they have somewhere suitable to be with their baby and deal with the aftermath of a terrible situation.

[Will Quince]

I thank the hon. Lady for her intervention. I will absolutely thank and pay tribute to that charity. In so many cases, bereaved parents want to do something to make a difference and to provide a legacy for or mark the life of their child, however short, and raising money to support our NHS or to provide support for bereaved parents is hugely worth while. If I heard the hon. Lady right, an incredible £300,000 was raised: I pay tribute to the work that parents across the country do to raise such sums, which support the NHS in providing world-class facilities. I will discuss this further in a bit, but although we do have world-class facilities and bereavement suites some of our hospitals do not have them, which is an issue in and of itself.

I have thanked charities, but it is also important to thank the clinicians and support staff within the NHS who work so hard in this area. They really are heroes, and their work is incredible. Midwives do an incredible job, because although they are so often there at the best time in someone’s life—when a child is born—they are sometimes sadly also there at the very worst time in someone’s life. Their ability to, in effect, wear both hats and provide that caring, compassionate, empathetic support is a credit to them. We really do have world-class staff in our NHS.

I also thank all the clinicians who are working so hard on the national bereavement care pathway. Numerous colleagues have mentioned it already, and it is important to reference the progress made so far. I do not want this to be a back-patting debate, because I will move on to some areas where the Government could do more, but we have achieved quite a lot in just over three years. The first, and probably most significant, achievement was the Government’s commitment to reduce stillbirth and neonatal death by 20% by 2020 and by half by 2025. I note that that target has been moved forward—I think the target three years ago was 2030—thanks to the work of the Secretary of State for Health and Social Care, Health Ministers and clinicians. Having spoken to the Department and to clinicians up and down the country, I understand that those targets are realistic and achievable and that we are on track to achieve them, which is quite incredible.

However, it is important to note that even if we achieve the target of reducing stillbirth and neonatal death by 50%, that still means that around 2,000 or 2,500 babies are dying in the UK every single year and that a similar number of families will be going through a horrific personal tragedy, so we must ensure that we have world-class support. That is why the national care bereavement pathway, which I think it is fair to say was a concept initially drawn up based on the APPG’s work with charities, is game changing. The pathway is game changing, because what we had and continue to have across our NHS is world-class bereavement care, but it can be found only in pockets. It is not consistent across the NHS.

A particular hospital trust may have one or perhaps even two specialist bereavement suites and one, two or maybe more specialist bereavement-trained midwives or gynaecological counsellors, and all sorts of charities may be supporting bereaved parents within that hospital trust. In other hospitals, however, there may be no bereavement suite and perhaps just one or even no specialist bereavement-trained midwives or gynaecological counsellors. That is an issue, so a national bereavement care pathway that provides consistent, compassionate, empathetic care and support across our NHS, whichever hospital one visits, is so important.

[Antoinette Sandbach]

I congratulate my hon. Friend on that point. However, even where world-class care is not available, that can change, and the Medway NHS Foundation Trust is a great example of that. It received a negative inspection report, but it completely turned the situation around and now has absolutely first-class facilities. World-class care is achievable when hospital managers and NHS trusts are absolutely committed to delivering it.

[Will Quince]

My hon. Friend is absolutely right. The core purpose of the national bereavement care pathway is to show what good care looks like so that it can be rolled out across our NHS. My hon. Friend is right that we can do that by having bereavement suites and trained gynaecological counsellors and midwives, and we are seeing it. The pathway has now been launched in 32 sites, and I must again praise the Government for their initial funding, which supported the establishment of the principle and the pilots, and then the further funding for the roll-out into more sites.

I echo the comments made by my hon. Friends the Members for Eddisbury and for Banbury (Victoria Prentis) about further funding to roll out the pathway to ensure that it reaches the entire NHS nationwide, but 77% of professionals at the pilot sites who were aware of the pathway agree that bereavement care improved in the trust during the trial, and some 95% of parents interviewed agreed that the hospital was a caring and supportive environment. We therefore know that the pathway is making a difference and will work, which is why the Government have been so supportive. We just want to ensure that it is rolled out. The roll-out has deliberately happened in stages because ensuring that it is effective and embedded is just as important as the initial implementation.

Others have mentioned the Parental Bereavement (Leave and Pay) Act 2018, which is an incredible and ground-breaking piece of legislation. It is the first time that workers have had such a right, and it is one of the best rights in this area in the world. I pay tribute to my hon. Friend the Member for Thirsk and Malton (Kevin Hollinrake) for so ably and passionately steering the legislation through the House of Commons and then ensuring its passage through the House of Lords and beyond. It is game changing, because it means that, from 2020, parents who lose a child up to the age of 18 will be entitled to two weeks’ paid leave. That is particularly important in relation to this baby loss debate, because it means that parents who lose a child to stillbirth will also be entitled to those two weeks.

For a mother, those extra two weeks may not be a huge change because mothers are entitled to their full maternity leave, but for a father it is game changing. Instead of two weeks’ paternity leave, he will get four weeks, because he will get the additional two weeks of paid leave. The Act will make a huge difference to fathers up and down the country who go through the awful experience of a stillbirth.

I said earlier that this was not a back-patting debate. Far, far more needs to be done. Earlier we had reference to bereavement suites. It is essential that we have bereavement suites in every hospital up and down the country. It is not acceptable that any parent should have to suffer a stillbirth or neonatal death in a maternity unit where they can hear happy families, crying babies and people with balloons and teddies—all the joy of that. People who are going through this most traumatic of experiences need somewhere quiet for reflection, to grieve and to spend time with their baby in peace. We know that we can provide this because NHS trusts up and down the country are providing bereavement suites. In Colchester we were lucky to have use of the Rosemary suite, and I am not quite sure what we would have done without it.

So we have to ensure, Minister, that we have a bereavement suite in every hospital away from the main maternity unit. Ideally, I would like another room to be available, because you cannot book in. You do not know when exactly you are going to have a baby—these things do come on, as my wife and I found out with our second, who was born at home, unexpectedly. It was also a pretty traumatic experience, but it ended well. The point is that people do not know and they cannot book suites out. They can just turn up at hospital. If, sadly, the suite is already being used, another room should be available. It might not have the full facilities of a bereavement suite, but it is important to have that room.

As was mentioned earlier, cold cots are also important. Not all parents will want to spend time with their child, but those who want to should be able to spend as much as they need after the birth, and for that cold cots are important.

As I mentioned earlier, it is important that bereavement-trained midwives or gynaecological counsellors are available in every hospital—not part time but full time, and available for parents when they need them. Let us not forget that many stillbirths and neonatal deaths are sudden and unexpected. It is a hugely traumatic experience and people need support immediately. A trained individual is so important. However, there is merit in ensuring that bereavement training is a module in the midwifery course so that every midwife is trained to an extent, because sadly we know that they will come across stillbirth and neonatal death in their career.

The other thing is to ensure that there is learning from every miscarriage and stillbirth. We still do not really understand why 50% of stillbirths happen. I will come on to it, but research is so important. I have already mentioned embedding the national bereavement care pathway.

I want to touch on the new pregnancy loss review, because it has not been mentioned so far. One of its heads is Zoe Clark-Coates of the Mariposa Trust. We often talk about stillbirth and neonatal death, but we do not talk enough about miscarriage and we still do not really know the true numbers of miscarriages. Colleagues in the Chamber have spoken emotively in previous debates about their experience of losing a child at less than 24 weeks. They said that their loss was not recognised in any way because it was classed as a miscarriage, not a stillbirth, even though they gave birth. This is why the pregnancy loss review is so important.

I echo the comments made by my hon. Friend the Member for Banbury about post-mortems. Too often, people are scared to have the conversation about a post-mortem. It is a difficult subject; I would not want to approach parents who have just lost a child and ask if they would consider a post-mortem. But it is so important that that question is asked, because post-mortems will enable us to start to understand why stillbirths happen. So changing cultures within NHS trusts to ensure that that question is asked as a matter of course is important. The parents can say no, but if they are not offered the opportunity, they may look back and say, “My child’s life could have made a difference to future children.”

I would like to see the national bereavement care pathway and bereavement support more widely included as part of the matrix and assessment regime for the Care Quality Commission. We do not put enough emphasis on bereavement and the support that parents are given. I would also like to see support for subsequent pregnancies. There is pretty good support in many NHS trusts at the point at which someone suffers a loss, but what about subsequent pregnancies? Often the mother and the father will be thinking every single day up until the 12-week scan, every single day up until the 20-week scan, “Is this going to happen again?” But at that point often no support is available unless they reach out. The support network is patchy across the country.

My hon. Friend the Member for Gloucester (Richard Graham) spoke about fathers, and he was absolutely right to do so. As I said at the beginning of the debate, it is important that men take part in it. So often, men bottle things up. They think they have to be the tough guy and hold it all in to support the family. I did it, and I have spoken to other fathers, so I know that it is a common reaction. Men are often treated like the spare part. That is by accident, not design. The chaplain or midwife will often be talking to the mother—understandably—but the father has just witnessed the woman they love give birth to a child they love and have now lost. They have been through the experience too. They are often the ones who will have to go off and tell family members, register the death and make arrangements for the funeral. So it is important to ensure that fathers have all the necessary support available to them, and it is one area that the NHS needs to get much better at.

It is important that we have more research into baby loss. The taboo nature of this issue means that charities that specialise in it—even the bigger ones such as Sands, the Lullaby Trust, the Mariposa Trust and others—do not get the financial support that other charities do. I implore people up and down the country to support baby loss charities, because they can fund vital research, which will lead to fewer babies dying.

Lastly, I want to touch on another passion of mine. We talk about 15 babies dying every single day in the UK. Every single one is a tragedy. But 7,175 die every single day worldwide. Every day 830 mothers die from preventable causes related to pregnancy, and 99% of them are in developing countries. So let us be passionate about reducing stillbirth and neonatal death here in the UK, but let us be equally passionate about tackling this issue worldwide. I am a big champion of UK aid because I know that it makes a difference around the world. UK aid is not sold, especially by some of the right-wing media, but it is so important in tackling issues such as this. I do not think that there is one person in this country who would say that spending money on reducing the number of deaths of babies is not money well spent. If we were to get the newborn mortality rate of every country down to the average of high-income countries such as our own, or even better below it, that would save 16 million lives a year.

UK aid is already making a huge difference to this issue. In 2015-16, something like £124 million was spent on maternal and neonatal health. That is equivalent to about 15% of aid spending. The Department for International Development is supporting programmes in about 16 countries, focusing on maternal and neonatal health. I recently made a visit with Unicef to Ethiopia, a country that has a high prevalence of baby loss. Although the number of deaths of children aged between one month and five years has dramatically fallen in recent decades, newborn death remains a massive issue. Think of the difference we can make worldwide if we can share some of the learnings from this country and others in the western world by using UK aid and support from clinicians in this country. Let me give an example of that.

One of the biggest causes of newborn death in Ethiopia is sepsis, which is relatively rare in the UK because we have high levels of hygiene and sanitation. UK aid water projects will make a huge difference on that, but we can do far more. At one neonatal unit there, the scrubs and clogs I was asked to put on were dirtier than the clothes I was wearing, which was a little worrying. There was a baby in there with sepsis, and I spoke to the doctor, who was a general practitioner, not a specialist in gynaecology or an obstetrician. There is a real need for some specialism and specialist training there. I asked, “Where is the hand wash? Where is your alcohol rub? This is commonplace. You can’t go about 10 feet along a hospital corridor in the UK without finding an alcohol rub dispenser.” He replied, “Ah, yes, I’ve got some of this” and he reached into a bottom drawer, underneath a load of stuff, and pulled it out. This is exactly the sort of intervention, on cleanliness, hygiene and sanitation, that we in the UK can share with countries around the world and that can make a difference. So I invite the Minister, and I will also be pushing the Secretary of State for International Development on this, to have a little more focus on tackling infant mortality, stillbirth and neonatal death on a global scale.

I have probably spoken for long enough, but I just want to say that this is a hugely important subject. We in the all-party group will continue our work, and I wish to thank all Members here from across the House, the Government and Members from all parties for their ongoing support.

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[Jim Shannon (Strangford) (DUP)]

I thank Mr Speaker for granting this debate and the Backbench Business Committee for selecting the subject. I thank the hon. Member for Eddisbury (Antoinette Sandbach), who as always set the scene on a subject about which she is very passionate and knowledgeable, with her personal story. I thank all the right hon. and hon. Members who have made incredible contributions, every one of them straight from the heart. They have certainly set the scene for a very serious debate in which we acknowledge what has happened. The hon. Member for Colchester (Will Quince) put forward ideas that he thought would be helpful. Everyone did that, to be fair, but he did so especially.

I will never begin to speak in a debate of this variety without first expressing my sincere sympathies to all those who have been affected by the loss of their baby, at whatever stage. My thoughts are with those people today, and I pray that the God of peace and comfort will be their strength. Baby loss is an extremely painful topic, but it is one that is being spoken of more and more. Such debates enable some of the pain and hurt to be talked about, and that can only be a good thing. We must thank charities such as Saying Goodbye for raising the topic and saying that it is okay to speak out, remember and reflect. Whatever way a person deals with their pain is okay, as long as they know that they are not alone. Such debates allow us to express the message, “You are not alone.” The Members present who speak in these debates reflect the opinions of our constituents outside the Chamber, about whom we talk.

As I have said in previous debates, my mother suffered several miscarriages, as did my sister and a member of my staff—in fact, the member of staff who helps me to prepare my speaking notes. For me and for all of us in the Chamber, this is a matter that is very close to our hearts. The hon. Member for Caithness, Sutherland and Easter Ross (Jamie Stone) spoke of the miscarriages that his mum had between his birth and that of his younger brother. That is probably very real to me, as well. As we spoke about my staff member’s workload for the coming week, we realised that it was Baby Loss Awareness Week. Might I suggest that if a debate ever came at the right time, this one did? We discussed how during the last two weeks of September, we had heard of six couples who live in my constituency who had suffered miscarriages. That is six children lost; six expectations never to be fulfilled; six homes filled with sadness; six women who felt empty; six partners who felt so helpless; and countless loved ones who simply had no words. Those six people were known to all of us very personally, and the fact that one in four pregnancies ends in miscarriage has never felt so real.

In the past eight months, I have known three ladies, who are also constituents of mine, who have carried their babies for the full nine months only to have them for just two hours. I can well remember my wife, Sandra, informing me that she was pregnant with our first son, Jamie. Like every parent, I had never felt such joy. I planned for our future and imagined what he would look like. I did not check whether the baby was a boy or a girl as I have always liked the element of chance. I just hoped that whatever sex the child was, they would be accepted. To be truthful, I did ask for three boys and I got three boys—I am not sure how that worked. As I held my child, I realised that the expectation could never meet the reality of having a child in my arms. I also remember very well holding my first grandchild, Katie—I know that there are other Members here who are grandparents as well. Katie is now nine years old. I remember when Del Boy, the character on TV, took Damian in his arms and he looked at him in wonder, and there was I at the Ulster Hospital in Dundonald. I said, “Next year, Katie, we will be millionaires.” Of course, we were not millionaires, but we were in a way as we had our grandchild. Such was the joy that we felt. Therefore, when I think of those families who have lost that hope for their future, my heart simply aches. Through my constituents, I have stared into the face of pure sadness and emptiness, and I would have given anything to change the outcome. That was never going to be in my power, or in the power of anybody in this Chamber, but, having spoken to many women, one theme is clear: they cannot forget their loss and they do not want others to forget it either.

I know that my parliamentary aide will not mind me saying that she lost her first baby abroad while on a church mission trip. She returned a few years later with her family—she now has two wee girls—and planted a tree with a simple plaque in remembrance of the wee child who had died. This simple act of remembrance, while not addressing her grief, helped her to move forward, as she knew that that tree would grow and be a testament to the life that began but could not flourish and grow. This is a desire that is reflected in the events that are organised to celebrate the short lives of babies. Women no longer feel that they must and should grieve in silence. The taboo that existed in my mother’s generation that kept women silent in their grief has gone now. One look on social media will reveal messages that say no more than a date, or a number of dates, and that is proof that it is good for some women to acknowledge and commemorate their loss. Balloon releases and services of remembrance indicate that those who grieve want to see their loss acknowledged.

There are, of course, other women who wish to grieve in silence and that is their right, and I absolutely respect that. Some pain can never find a voice. We may never know the people around us who have gone through baby loss—I am sure that a trawl of families of staff members in this place would show us all to be connected in some way to a loss of child—but what we must know is that there is a way in which we can remember and pay tribute to those lives, those hopes and those dreams that have been lost.

I want to take a brief moment to think about the fathers. This is something that my aide mentioned to me and that others have referred to as well. Fathers suffer emotional loss—not the physical emotional loss—and have to watch their loved one going through the physical and emotional trauma of loss and they need to be remembered as well. It is their loss as well and they have a right to grieve, and that should be said in this place, too. Others have also referred to grandparents and other family connections. There must be support available for the whole family, and I feel that this is lacking. I have heard it said that the leaflet that is handed to a mother when she miscarries does not help. It is often not read or thought about. A follow-up phone call offering help and advice may go a long way to dealing with the pain and the fear, and I am grateful to the charities that fill that breach when perhaps, with great respect, the NHS does not.

What words do I have for those who have lost babies?

[Will Quince]

I distinctly remember the intervention that the hon. Gentleman made in that speech back in November 2015 when he raised the importance of the hospital chaplain and the huge comfort that they give to families. Does he agree that the point he made then is as valid today as it was three years ago?

[Jim Shannon]

Absolutely, and I thank the hon. Gentleman for his intervention and for reminding us of that debate. Like many others in this Chamber, I am a man of faith who feels that it is important to have a chaplain available—to have someone to share one’s grief and hard times. The intervention that he mentions was right along those lines. I felt that it was so important to have that help at that time, just when one needed it the most. I thank him for his intervention and for his salient reminder.