Baby Loss

Will Quince Excerpts

Thursday 13th October 2016 Commons Chamber

[Will Quince (Colchester) (Con)]

It is an honour to co-chair the all-party parliamentary group on baby loss and a privilege to follow the hon. Member for North Ayrshire and Arran (Patricia Gibson), who is an active member of the group.

I should like to share some statistics, some of which have already been shared with the House, but repetition is important in this case, so that we have a real understanding of the scale. One in four pregnancies end in miscarriage. One in 200 babies are stillborn in the UK. About 15 babies die each day either before, during or shortly after birth in the UK. There are about 3,500 stillbirths every year in the UK. Half of all stillbirths are said to be preventable. The rate of stillbirth in the UK is higher than in Poland, Croatia and Estonia. The lives of 2,000 babies could be saved every year if the UK matched the best survival rates in Europe.

It is a great honour to follow all those right hon. and hon. Members who have spoken so far and shared such harrowing accounts of what has happened to them. In particular, I should like to praise—I do not want to appear patronising in any way—and to say how proud I am of the hon. Member for Lewisham, Deptford (Vicky Foxcroft), who is a good friend of mine, for giving her account in such a powerful and emotional way. I want to make it absolutely clear that I genuinely believe that we are doing something very special in the Chamber today. We are breaking a silence; we are breaking a taboo; and we are showing parents up and down this country that it is okay to talk about the babies and children we have lost. In fact, it is more than okay; where we feel that we are able to, we should. I hope that people across this country have seen today that there is no subject that we will not debate and talk about in the mother of all Parliaments if doing so will improve the lives of others.

[Kevin Hollinrake]

I congratulate my hon. Friend on securing this debate. On his point about inspiring people to come forward, what he describes is exactly what happened to Luke and Ruthie Heron, constituents of mine. Their son Eli was born after 23 weeks and six days. He lived for two and a half days further. Had he not lived those two and a half days, he would have been considered a miscarriage, rather than a short life. Grief cannot be measured in hours, days or weeks. Does my hon. Friend agree that we should reconsider the time criteria that determine when a life is considered a life?

[Will Quince]

Yes. I thank my hon. Friend for that contribution. The all-party parliamentary group is very much looking at that. He is absolutely right to say how important this is. There are people who have suffered what is currently termed a miscarriage when—let us be clear—we are talking about a life, a baby. However, because of our abortion laws and all sorts of other rules and regulations, we are not allowed to register that life and give that baby a name. We are certainly looking at that.

[Mrs Hodgson]

Lucy, my daughter, was born at 23 and a half weeks. Sadly, she did not live; if she had, she would have been rushed straight to the special care baby unit at the Royal Victoria infirmary. I always class her as a stillbirth, but officially it was put down as a miscarriage, and I was not given a death certificate, which was another trauma on top of the trauma I had already gone through. On paper, it was a miscarriage, but she was blessed by the chaplain while I was still in hospital, and we went on to have a funeral, which I felt was right; I had held her in my arms, and she was a fully formed baby. There is an anomaly that has to be addressed.

[Will Quince]

Indeed. I absolutely agree with the hon. Lady. Moreover, I thank her for the huge role that she plays on the all-party group, and played in its formation.

To come back to the point that I was making about the importance of today’s debate, we are really lucky—I hope that all hon. Members agree—to have the best job in the world. We have a duty and responsibility to try to use our experiences—some great, some good, and some terrible—where we can to make the lives of others better. Through this debate, we would like to, in the fullness of time, reduce the stillbirth rate and neonatal death rate by 50% and save the lives of 2,000 babies. That is an incredible target to aim for.

[Hannah Bardell (Livingston) (SNP)]

I congratulate the hon. Gentleman and other Members on being so brave and speaking out in this debate. In the spirit of sharing experiences, friends of mine who were due to have twins sadly lost one due to twin-to-twin transfusion syndrome. Does he agree that it is important that, in the aftercare for parents who have lost babies, we consider the very different nature of, for example, multiple births, and ensure that care is tailored appropriately in all circumstances?

[Will Quince]

Absolutely; the hon. Lady makes a very good point. I will mention that a bit later. Charities such as the Twins and Multiple Births Association do incredible work in this field; one of my hon. Friends raised that issue earlier.

[Melanie Onn (Great Grimsby) (Lab)]

Following on from the point about mothers who experience late-term baby loss and the treatment that they receive in hospital, very often they are kept on maternity wards, which can be incredibly traumatic. The point was made about tailoring care and support for parents who lose their children. Is remaining on a maternity ward the most suitable option for them?

[Will Quince]

I thank the hon. Lady for that point, which I will come to in a moment.

Begging the indulgence of the House, I would like to share my experience, in the spirit of showing people outside the Chamber how important it is to talk about this, if we are able to. We found out at our 20-week scan that our son had a very rare chromosomal disorder called Edwards syndrome, a condition that is rather unhelpfully described as being “not compatible with life”. We knew throughout my wife’s pregnancy that the most likely outcome would be stillbirth, but our son was an incredible little fighter, and he went full term—over 40 weeks. He lost his life in the last few moments of labour at Colchester general hospital.

To pick up on the hon. Lady’s point, Colchester has a fantastic hospital that has a specialist bereavement suite called the Rosemary suite, where we got to spend that really special time—including before the birth, because we knew what outcome was, sadly, likely. I got to stay with my wife; we got to stay there overnight; we had a cold cot, so that we could have lots of cuddles. We could continue, the next morning, to spend time with our son. I completely agree with the hon. Lady, which is why my hon. Friend the Member for Eddisbury (Antoinette Sandbach) and I had a debate in November last year on bereavement care in maternity units. Bereavement suites are so important. In this country, in the NHS, there should never be any excuse for a mother and father, or a mother, who have lost a baby to go back on a maternity ward with crying babies, happy families and balloons; that is just not appropriate or acceptable. Having gone through that experience, I know that what people need is the peace and quiet to come to terms with the personal absolute tragedy that has just happened.

[Keith Vaz (Leicester East) (Lab)]

I congratulate the hon. Gentleman, the hon. Member for Eddisbury (Antoinette Sandbach) and all others who have been involved with the all-party group. When my child died at term, 23 years ago, we did not have a bereavement suite in Leicester, although we do now. The issue is not just parents’ ability to grieve and be with their child; it is also about getting expert help and counselling at that moment. My wife was told that she would never have children again after the stillbirth, but we had two children subsequently. It is so important to get that advice right at that time. Does he agree?

[Will Quince]

Yes, of course I agree. I will come to that point later. After the debate in November on bereavement care in maternity units, my hon. Friend the Member for Eddisbury and I were taken aback by the number of people across the country who got in touch and shared their stories with us. We sat down—this was during proceedings on a Finance Bill, so it was about 1.30 am —with the then Minister with responsibility for care quality, my right hon. Friend the Member for Ipswich (Ben Gummer), my hon. Friend the Member for Banbury (Victoria Prentis), who is not quite in her place, and the hon. Member for Washington and Sunderland West (Mrs Hodgson). We thought, “This is a far bigger issue than just bereavement suites. The whole subject of baby loss needs addressing.” We were pretty surprised that there was not already a group looking at the issue.

The all-party parliamentary group was formed in February, and I am very proud of the work that we have done so far, working with amazing charities across this country. I cannot name some of them, because I would have to name them all. From large charities that do the most amazing work and fundraising, through to the groups made up of just a handful of people who get together in a local pub or village hall and knit really small pieces of clothing for babies who are premature and sadly stillborn, it means so much that so many people across this country want to play their part and make a difference.

I cannot let this speech go by without referring to the support of Mr Speaker, who is not in the Chamber at the moment, not just for this campaign, but in kindly allowing us to use his apartments for the reception yesterday, and during baby loss awareness week. Yesterday, which would and should have been my son’s second birthday, he called me to ask a Prime Minister’s question on this subject, and so raise the issue in front of millions of people and the country’s media.

[Mr Kevan Jones]

I know that the hon. Gentleman does not want to name individual charities, but Sands does a great job. The point raised with me by Ashleigh Corker, a north-east co-ordinator who lives in my constituency, is that one of the most powerful things that Sands can do is put parents in touch with other parents—people who have gone through the same thing—so that they can share experiences. Does he agree that that is a very powerful thing to do? A lot of people can empathise with what parents are going through, but unless a person has gone through this themselves, it is very difficult to understand.

[Will Quince]

The hon. Gentleman raises an incredibly good point. In the run-up to birth, people can go to groups such as NCT and prenatal classes, so I totally agree. We have made friends who have gone through similar experiences. You feel that you can talk openly with them, because they have gone through very similar experiences and are feeling the same things as you. That is very powerful. There may be a role that charities and the NHS can play in putting parents—where they feel able—in touch with other parents who may want to talk about their experience.

I shall speak briefly about Government targets. I know that the Government sometimes get a hard time on the NHS, but they have accepted the premise of our argument. I remember first meeting my right hon. Friend the Member for Ipswich as Minister responsible for care quality—it was like pushing at an open door. We now have firm commitments to a reduction of 20% by the end of this Parliament and 50% by 2030. It is our job as an all-party parliamentary group to hold the Government’s feet to the fire and to make sure that they are working towards those targets and that we start to see results.

I could not let this debate go by without talking about some of the issues that charities have raised with me. I shall touch on prevention and then talk about bereavement. Research in this area is vital. As my hon. Friend the Member for Eddisbury said, around 50%—in fact, the figure is 46%—of stillbirths and 5% of neonatal deaths are unexplained. We need to look, for example, at ethnicity and ask why south Asian women are 60% more likely to have a stillbirth, and why black women are twice as likely to do so. Why is there a geographical disparity across the UK? I know that part of the answer is social inequality, but why is the figure 4.9% in some parts of the UK and 7.1% in others? That is around a 25% variation. It is not acceptable and we need to understand why it exists.

We need to look at multiple pregnancies, as the hon. Member for Livingston (Hannah Bardell) mentioned from the Scottish National party Front Bench, and at lower income families. We need to study our European counterparts and see why they are getting it so right and whether we can implement similar measures in the UK.

Some right hon. and hon. Members have mentioned public health and they are right to do so. Maternal age, nutrition and diet, drugs, alcohol and smoking are all relevant. We could achieve a 7% reduction if no woman smoked during pregnancy. That is a huge target to achieve and we could do a lot of work on smoking cessation, especially during pregnancy. Studies show that we could achieve a 12% reduction if no mothers were overweight or obese.

There is a huge piece of work that we could do on empowering women and mothers-to-be. Initiatives such as Count the Kicks are important. Nobody knows their body as well as a mother. If she feels that there is something wrong, there is a good chance that something is wrong. When she picks up the phone to the hospital or to her GP and her concern is dismissed with the words, “Don’t worry, it’s not important,” she needs to get it checked out. If there is nothing to worry about, great, but on the occasions when we do not get a concern checked out and then something terrible happens, we have to hold ourselves responsible.

There are various initiatives to empower women. Teddy’s Wish is currently sponsoring fantastic folders—as anybody who has had a baby will know, mothers-to-be get purple maternity notes which they carry around religiously just in case the baby comes early. The wonderful plastic folders that the maternity notes go in inform mothers—and fathers—what to look out for, what are the signs if something is not right, when to pick up the phone, when to go and see their GP and when to go to the hospital. Such innovation is exactly what is needed.

Investigation and reporting are important so that we learn the lessons of every stillbirth and neonatal death. Covering things up and dismissing them with comments such as, “That’s unexplained. These things happen. I’m terribly sorry,” are unacceptable. We have to learn from every case. I am pleased that the Government have put a significant amount of money into setting up a system of reporting to enable us to investigate and learn from every stillbirth and neonatal death.

The hon. Member for North Ayrshire and Arran (Patricia Gibson) rightly mentioned post-mortems. So many parents are not offered a post-mortem. One might wonder what parent would want that opportunity, but parents who lose children often want to know why. They want to understand how and why it happened and how they can make sure that it does not happen again. Offered the opportunity, many parents opt for a post-mortem because they know that that research can help others, but clinicians may not be asking the question—often with good intentions, because it is not an easy question to ask. We must ask the question if we are to get post-mortem rates up, which will feed into the research that will allow us to cut our stillbirth rate.

An hon. Member—I apologise, I cannot remember who it was—mentioned late-stage pregnancy scanning. In this country we do not scan past 20 weeks. We scan at 12 weeks and we scan routinely at 20 weeks, but there is no routine scanning past that. I find it bizarre that the abnormality scan takes place halfway through the pregnancy, but after that the mother-to-be is not seen again for a scan until she arrives at the hospital when she is in labour. Other countries across the world and particularly our counterparts in Europe do scans at 36 weeks or Doppler scans. There are huge improvements that we could make in that area.

I want to clarify one point in relation to prevention. The NHS is brilliant, and where we get it right in this country, we really get it right. The problem is the inconsistency across the NHS. I know that the Secretary of State and the Minister of State will agree when I say that we have some of the best care in the world, but it is important that that is replicated in every hospital and every maternity unit in the country, so that whatever hospital a woman goes into and whatever GP she sees, she will get the same level of care and consistent advice.

Even if we manage to achieve our target, even if we match our European counterparts and reduce our stillbirth and neonatal death rates by 50%, that will still mean between 1,500 and 2,500 parents going through that personal tragedy every year. That is why it is important that the APPG puts an equal emphasis on bereavement. I have talked about consistency of care across the NHS, and there should also be consistency of bereavement pathway and bereavement care across the NHS. It is important that we consider aspects such as training for staff. I know that Ministers have put huge amounts of funding into training as part of the plan to achieve a significant reduction in the stillbirth rate.

[Victoria Atkins]

I am extremely grateful, as I said, to my hon. Friend for his part in securing this debate. I mentioned my constituents who had the nightmare of losing their baby boy. I asked the mother to write to me to set out precisely what had happened. Perhaps one of the most harrowing parts of an already harrowing story was when she told me that at the hospital she and her husband were not allowed to stay with the little boy for long. They were pressured to leave and when she was leaving the baby boy, she wanted to go back to say her last goodbye. She was refused. She collapsed to the floor and the officials around her said that if she did not get up, she would have to leave in a wheelchair or a stretcher, as it was time to go. Does my hon. Friend agree that kindness costs nothing, and that there is a duty on everyone, whether in the NHS or in the police, to make sure that when they are dealing with parents in such a situation, kindness is very much part of the way that they behave?

[Will Quince]

Yes, and my hon. Friend raises a good point. I only wish that the disgraceful behaviour and story that she has just related was unique, but sadly it is not. Reports from across the country and personal testimonies that I have read, sadly, echo such experiences. That is exactly what we need to address, and it is why training in this area is so important. Midwives and clinicians should be trained to deal with bereavement, including what language to use and what not to say. I will not repeat some of the things that I have heard said to parents who are grieving.

In our case, a stillbirth did not come as a huge shock, but let us not forget that many parents have no idea that such an experience, of stillbirth or neonatal death, is coming. It is one of the most emotionally sensitive periods of their lives and they are at their most fragile. My hon. Friend is right: it costs nothing to act with kindness, empathy and compassion. I would like to think that we can reach a point where those themes run through every maternity unit in the country. I know that that is the case in the vast majority of maternity units, but where we have instances such as my hon. Friend describes, they have to be ironed out.

I know that I am pushing your patience with regard to time, Mr Deputy Speaker, but I think that the bereavement point is so important. We must have bereavement suites and bereavement-trained midwives in every hospital in the country, and we need gynaecology-trained counsellors in every maternity unit. We also need ongoing mental health support, because the time a bereaved parent leaves the hospital is the not the end of their grief; for many it is just the start. Indeed, future pregnancies can be the most traumatic periods, because from the day they find out they are pregnant to the day they have a crying baby in their arms, they are thinking, “Is this going to happen again?” What mental health support is available? In some parts of the country it is fantastic, but in others it simply is not.

I want to make two final points. One relates to relationship support. We know that between 80% and 90% of relationships break down after the loss of a child, and that has a huge social cost. That is why mental health support is so important. I also think—this is one of the reasons I co-chair the APPG—that the voice of fathers must be heard. Fathers feel that they have to act as a rock, but in many cases we were there too. In my view, there is no worse experience than seeing your wife give birth to a lifeless baby. It is something that never leaves you. Every single day I think about my son. I think about what he would have been like yesterday, on what would have been his second birthday. I imagine a small boy running around our house, causing havoc and winding up his sisters. It is not to be, but every single day we live with that grief. Fathers need support too, as indeed do the wider family.

I want to end on a positive note. This is a hugely exciting time for us, because the opportunity for change is enormous. The APPG has made enormous progress since publishing our vision document, and I encourage those Members who have not yet seen it to find a copy—it is available online and in paper copy. What we have achieved since February, working with magnificent charities across the country, and with individuals feeding in their personal experiences, has been absolutely incredible. This is just the beginning of the journey, because we have just set out our aspirations and our vision of what we want to achieve. I know that we are pushing at an open door, because the Government want to achieve these targets too.

I want to send one final message to every parent who is bereaved up and down this country: we care; we are going to keep talking about it; and we are not going to stop talking about it until we reduce the stillbirth rate and, most importantly, we have the best quality bereavement care in the world.