Baby Loss Awareness Week

Debate between Will Quince and Antoinette Sandbach

Tuesday 9th October 2018 Commons Chamber

[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.

Parental Bereavement (Leave and Pay) Bill (Second sitting)

Debate between Will Quince and Antoinette Sandbach

Wednesday 7th February 2018 Public Bill Committees

[Will Quince]

I will speak to amendments 14 and 15. One of the hardest elements of the Bill is the definition of a child. Amendments 14 and 15 would define a child as a person under the age of 18 or in full-time education, or both. These are probing amendments and I do not intend to press them to a vote, for all of the reasons that I have set out in our previous sessions.

In my ten-minute rule Bill, I defined a child as a person under the age of 18, in compulsory full-time education, or both. I think my amendments are fundamentally flawed, because they say, “in full-time education, or both” but of course somebody can go back to full-time education at a later stage—they could be a mature student. Somebody in their 30s, 40s or 50s could be caught under the scope of the amendments, and that is certainly not the intention.

What I want is to get us all talking about where we should set the legal definition. The hon. Member for Glasgow East referenced teenagers in his points about teenage cancer, but of course teenagers are pre-18 and post-18, because someone who is 19 is also a teenager. The age of 18 is the point at which we all accept that there is a legal responsibility for dependents, and it is also when we can leave full-time education. However, as we all know from our days at school, people can be old for their class—they could be 18 and still in secondary school doing their A-levels. We have to consider that.

I hope the Minister can take the amendments away and look at them. There is that element of “compulsory” —those who are still at school; that would not catch people who are at university. However, there is an argument for doing so, because many students are still wholly dependent on their parents. There is also the issue of apprenticeships and so on, which are not necessarily compulsory post-18; nevertheless, students are on a relatively low income, so will be dependent on their parents. They are often living at home.

I hope the Committee will consider the amendments in more depth, so that we can work out what the right age is. Certainly, considering compulsory full-time education might be one of the potential solutions.

[Antoinette Sandbach]

I shall speak to amendments 18 and 19, which would add the words

“or a person under the age of 25 with a lifelong disability and a recognised dependency.”

The Bill applies to children under the age of 18, for all the reasons raised by my hon. Friend the Member for Colchester. Amendments 18 and 19 would extend the definition of “child” for the purposes of parental bereavement leave and pay to those under the age of 25 with a lifelong disability and recognised dependency.

From my own experience with the children’s hospices that work in my area, they have a cut-off of around the age of 25 for those with disability or illness—they are classified as still entitled to attend the children’s hospice as opposed an adults’ hospice up to that point.

Therefore, there should be an extension to cover disability and dependency. We know that the care offered by parents to those with a disability or a recognised dependency is very often very high, and they will have provided extensive love and support to their child. There are many parents who have children with a disability or a lifelong dependency who, sadly, do not make it to the age of 25. I question whether my amendment should be limited to 25 for such cases—