Baby Loss

Kevan Jones Excerpts

Thursday 13th October 2016 Commons Chamber

[Patricia Gibson (North Ayrshire and Arran) (SNP)]

I am deeply honoured to participate in this debate on an issue that could not be closer to my heart, and I am grateful to the cross-party group on baby loss for bringing this forward.

As we have heard, the loss of a baby is what every parent dreads. Those to whom it occurs are irrevocably changed for ever—their lives scarred by unspeakable tragedy. A year before I was elected, I had no notion that I would ever have the honour of being elected to represent the good people of North Ayrshire and Arran, but here I am, and because of my own horrific experience of stillbirth I feel profoundly that I should use that experience to help shine a light on this issue, which truly is the last taboo.

For too long, too many of those to whom this has happened understandably did not feel equal to the task of speaking out about this issue, and in turn those who have no direct experience of this issue simply do not know how to broach it and are often surprised to find out how prevalent stillbirth is across the UK. Around 3,500 babies each year across the UK are stillborn and another 3,000 die shortly after birth. To put this into context, that is around one baby every hour and a half, the equivalent of 16 jumbo jets crashing every year. It is inconceivable that this should continue. But it will, unless we remove the taboo and shine a light on this awful, awful phenomenon and do all we can for all the mums and dads of the future and all the babies yet to be born. It is sobering to think that in the course of this debate, somewhere in the UK two more little babies will have died, and two families will have been destroyed. It does not bear thinking about, but think about it we must. Yes, it is extremely difficult to talk about this, but we have a duty to all the babies who have been lost and a duty to all the bereaved parents who are struggling to put the pieces of their lives back together.

The fact is that, in Scotland, 34% of stillbirths are babies at the full term of pregnancy, and in England the figure is 33%. This is shocking, since medics at all levels will say that, barring some terrible freak accident, no baby who has survived a full pregnancy need die—not if proper monitoring and procedures are in place—yet such babies do die. In Scotland, some progress has been made in recent years to reduce the incidence of stillbirth, but we still do not compare favourably with our European neighbours. Across the UK, we still have a long way to go.

I know, as many others do, the horror of losing a baby. My baby, Kenneth, would have been seven years old this Saturday, the very day when we reach the culmination of Baby Loss Awareness Week—international pregnancy and infant loss awareness day—when we will see a wave of light for all our babies.

When children lose their parents, they are called orphans. When a husband loses his wife, he is called a widower. When a wife loses her husband, she is called a widow. When parents lose their child, there is no name for that. The reason that there is no name for it is that there are no words. It goes against nature. And in other loss of loved ones, all those who knew and loved them can share memories such as the last holiday, the last Christmas or the last important family milestone, but it is not like that with a stillbirth, so people understandably do not know what to say. How on earth could they? Sometimes, people are so keen to avoid saying the wrong thing that they say nothing at all. I have heard reports of women after a stillbirth seeing their neighbours cross the road to avoid speaking to them, such is the discomfort and anxiety about saying the wrong thing, because there is no right thing to say. There simply are no words; just a deafening silence and a terrible sense of being utterly isolated in consuming grief.

Like so many parents who have lost their babies, my husband and I are haunted by the loss of how we expected our lives to be after five years of fertility treatment. We are haunted by the potential wiped away so cruelly, so suddenly and so unexpectedly; haunted by the fact that it was completely avoidable; haunted by the fact that all this grief and sense of waste was because the Southern general hospital in Glasgow, now called the Queen Elizabeth university hospital, made a series of basic errors; haunted by the fact that that same hospital pulled the shutters down and for six and a half years refused to recognise that any mistakes were made at all and to this day has still not done so; and haunted by the fact that that same hospital, despite independent experts flatly contradicting it, insists that it did nothing wrong.

And this matters. It matters because this is an all too common story and demonstrates an unwillingness openly to engage in a learning process when mistakes are made. That shows the real culture—a fear even—of improvement if people cannot accept it when mistakes are made. How many parents must go through this horrific ordeal only to feel swept aside, ignored, dismissed and told, “It’s just one of those things,” as they try somehow to cope with the crushing weight of grief?

As we have heard already, bereavement care for parents is simply not good enough. Sands has done very important work in this field, and I want today to pay tribute to it. It understands the importance of listening to mothers’ concerns. It found that 45% of the mothers it surveyed who had undergone a stillbirth felt something was wrong before any problems were diagnosed, yet too many of those women were told that their concerns were unfounded and sent home, only for their babies to die shortly afterwards. Antenatal care must be a collaborative process. Mothers’ concerns must be paid attention to. Women know their own bodies.

We must have better monitoring of pregnancies, particularly those of women at risk of experiencing a stillbirth or neonatal death. The truth is that we are failing to identify many babies at risk. In addition, we must have more knowledge, data and research to help us to tackle this issue. The more we know about why our babies are dying, the more measures we can take to militate against it happening. It is very important that if mistakes are made—and remember that one in three stillbirths are at full-term babies—health boards and trusts should not investigate themselves. For investigations to be credible, they must be independent and carried out by people outside the situation. That is the right and proper thing to do to challenge the culture of secrecy.

Where it is believed to be merited, we should allow coroners in England to investigate stillbirths, so that errors in care can be addressed, where they have occurred. In Scotland, the equivalent would be a fatal accident inquiry. These are not straightforward or easy asks, but such an investment now will increasingly mean that, as expertise grows and intelligence is gathered, the need for such measures will necessarily decrease over time.

[Mr Kevan Jones (North Durham) (Lab)]

Does the hon. Lady agree that local authorities need to take into account the registration of deaths? I have heard of cases where people have had to register deaths at the same place where people were registering births. That is most upsetting for those parents.

[Patricia Gibson]

Indeed. I take on board what the hon. Gentleman says. It is an extremely traumatic experience to register the death at the same place where people are registering births. That simply makes the experience much more traumatic.

In my own case, my notes recorded that I was asked if I wanted a post mortem performed on my son. My notes did not record who asked me this question, what information I was given, or when I was asked it. I was so drowsy on morphine in intensive care, since my liver had ruptured after my body tried for 48 hours to deliver my baby naturally and the hospital repeatedly refused to perform a caesarean section, that I have no idea if I was actually asked this question. Why was the conversation not properly recorded in my notes? It is all pretty suspicious and only feeds into the sense of cover up and evasion by hospitals in such circumstances.

I am delighted that we are finally putting this very important issue firmly on the political agenda, and that is where it must stay. For those of us inside the Chamber and those of us outside—all the grieving parents watching today—it is too late to save our little boys and girls. But there are other boys and girls—other people out there, thinking of starting their own families, for whom it is not too late. It is our duty to do all we can to ensure that those little boys and girls enter the world as safely as possible. It is our duty to commit ourselves to this cause for their sakes and for the sake of all the babies who have been lost but will never be forgotten.

--- Later in debate ---

[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.