I beg to move,
That this House
has considered baby loss.
It is an honour and privilege to open the debate, and I thank you, Mr Speaker, for giving us the use of your house to launch baby loss awareness week in Parliament yesterday, which is the first time it has been officially recognised. Parliament is helping to break the silence around the death of a child, which is the most devastating loss that can happen to any parent. Last year, when my hon. Friend Will Quince spoke in the Adjournment debate, neither of us was prepared for the huge response from parents who have suffered similar losses.
In the Prime Minister’s recent speech, she spoke about tackling injustice where she found it. The sheer scale of child loss in the UK is an injustice, and one that is suffered by so many families year in, year out. Child loss is devastating for each family involved. I should like to outline the size of the problem facing parents, speak about what can be done to prevent loss on the scale we currently face in the UK, and finally talk about bereavement care and best practice to support parents through such a terrible time.
The major types of child loss include miscarriage, stillbirth and neonatal death, although the Department of Health needs to look at streptococcus B deaths, ectopic pregnancies and many other specialist areas such as multiple birth pregnancies.
One in four pregnancies will end in miscarriage. This is often a silent killer, one where parents receive very little support. Of the estimated 200,000 mothers and their families who are affected by miscarriage every year, many will suffer in silence and isolation. A woman has to go through three consecutive miscarriages before any investigation will be carried out.
Ms O’Sullivan, speaking of her experiences after four miscarriages, said:
“The lack of recognition for miscarriage often just serves to reinforce the flawed idea that somehow a pregnancy ‘didn’t matter’, which increases the feelings of isolation”.
She went on to say:
“The loneliness and isolation that miscarriage brings, and the way that it can affect other aspects of life—hopes, dreams, decisions about work—are so difficult and yet under-recognised. We need to demystify it and make it okay to talk about.”
One parent I know wrote this to me:
“Before I even knew I was pregnant I developed a butterfly rash across my chest. My GP dismissed it as an ‘allergic rash’. No blood test, nothing. When I miscarried 9 weeks later at 12 weeks, my GP cheerily said, ‘Keep trying. Miscarriage is common at your age.’
I was 37. No blood test. Feeling disheartened and dismissed I went onto a further two early miscarriages without even daring to call the GP and waste his time. At my fourth miscarriage, I started googling. I approached my GP again—could all this be due to my existing thyroid condition? ‘Extremely unlikely’
was the response. Again, no blood test, but a recommendation to quit my stressful job. I obliged. It was only at a routine annual hospital check-up with my thyroid doctor after my fourth miscarriage four years later that I heard, ‘This sounds like Hughes syndrome, let’s do a blood test.’ St Thomas’s hospital confirmed the diagnosis, but sadly not soon enough to save the baby I was carrying—my fifth. Happily, after proper treatment I became pregnant again, finally giving birth to a healthy boy on the eve of my 42nd birthday. After five miscarriages and five years of my life lost to hope and grief and hope again due to my GP’s ignorance, I still feel cheated and, shame on me, a little bitter. I urge you please, give miscarriage the research, resources and respect it deserves.”
This is just one example of why we need action to help us to find the root causes of miscarriage. I am pleased that earlier this year the first miscarriage research centre in the UK dedicated to preventing early miscarriage opened. That centre is working with Warwick, Birmingham and Imperial NHS trusts, as well as Queen Charlotte’s. It is undertaking excellent research. I know that because my sister, who has had seven miscarriages, has benefited from its work. This year, she gave birth to baby Ella. I am thrilled for her.
The clinicians there, Dr Maya and the team, Dr Tom Bourne and others are doing ground-breaking work on the Genesis Project, looking at the issues around early miscarriage. As an example of how dedicated the staff are, the receptionists who had seen women walking in and out of Queen Charlotte’s, organised for the first time, and in their own time on a Saturday, a multiple miscarriage support group. Clinicians and psychologists also attended in their free time. It has benefited a huge number of women. That learning has the potential to really help to support the work the Government would like to achieve in tackling our child loss rates.
In 2014, 3,245 stillbirths were recorded by Embrace UK. That rate is shockingly high for a high-income country. Even more frightening is the fact that the causes of 46% of stillbirths are unknown. This is devastating for families who want answers. It is also unacceptable in this day and age that more is not being done to identify and investigate the cause of death. When combined with neo-natal death rates, over 6,000 patients are suffering child loss every year. Feelings of isolation and loneliness are experienced by parents who suffer other forms of child loss. Data on tackling stillbirth in The Lancet rate the UK 114 out of 164 countries for progress in reducing stillbirth. Justin Farrimond, who engaged in the digital outreach debate organised by the House on Monday, put it this way:
“To the nurse that had a bad day, that didn’t take correct measurements, that failed to notice a lack of growth, that chose not to look at previous records, that decided not to engage with the mother, that was instrumental in the loss of our baby—we don’t want an apology—your actions were unintentional—we don’t want you to lose your job, you need to continue in your post. In future we know you will be more careful, you will be a model nurse, because you will know what can happen if you have just one bad day. When you have lost a baby you don’t want revenge, retribution, or compensation. You only want to be understood, and for it to never happen again”.
That powerful quotation reflects what so many parents have said to me. They want lessons to be learnt. Most of all, they do not want it to happen to anyone else.
In order to achieve that, there needs to be better investigation of full-term stillbirth where no foetal abnormality is present. There needs to be greater willingness by medical staff to discuss the value of post mortems with parents, so that causes can be identified. There needs to be better and thorough investigation. Professor Cameron of the Royal College of Obstetricians and Gynaecologists has stated:
“The quality of local investigations into cases of stillbirth, early neonatal death and severe brain injury occurring as a result of incidents during term labour must improve”.
My hon. Friend is making a wonderful, wonderful speech and I am very glad to be involved in this debate. I am here because of my constituent Rolf Dalhaug, who lost one of his twin sons, Thor, due to some mistakes during birth. He is particularly concerned that we should take on board the messages in the report to which my hon. Friend has referred about the importance of learning and reviews. I want to underline the point she is making and look forward to hearing the Minister say what we are doing to ensure that that happens.
I am grateful for that intervention because it makes the point entirely.
Professor Cameron went on:
“Stillbirth rates in the UK remain high and our current data indicate that nearly 1,000 babies a year die or are left severely disabled because of potentially avoidable harm in labour. The emotional cost of these events is immeasurable…When the outcome for parents is the devastating loss of a baby, or a baby born with a severe brain injury, there can be little justification for poor quality reviews. Only by ensuring that local investigations are conducted thoroughly with parental and external input, can we identify where systems need to be improved. Once every baby affected has their care reviewed robustly we can begin to understand the causes of these tragedies.”
The parents who engaged in the digital debate on Twitter earlier this week to raise their concerns about baby loss spoke of the need for third trimester scans and greater consistency of care during the pre-birth period, during labour and following the loss of an infant.
I want to move on to neonatal death. Mr Speaker, as you know, I spoke about my experiences with Sam last year. Parents from around the country wrote to me of their experiences, some dating back many years and others from more recently. One father told me about his son George. He wrote:
“On 7th November my wife and I were delighted when baby George came into our lives, but on the 5th January just days after the festivities our lives were rocked, when our beautiful baby boy passed away in his sleep. Nothing could have prepared us for the hopelessness and feeling of loss, each morning waking up wishing that it was just a bad dream. As we watch the seconds turn into hours, days, weeks and even months, things for us felt hopeless, it was only the knowledge that our other children needed us that kept us from drowning in self-pity.”
George’s father went on that, like other parents,
“I found everyone affected share similar experiences, all wanting to do something, all wanting to make a difference. This is probably why I still feel I should do more, and more is never enough. I am now putting my spare time into raising awareness of sudden infant death syndrome and raising money for charities”.
My hon. Friend is making an emotional and passionate speech. Two of my constituents, Annika and James Dowson, attended a reception yesterday that was kindly provided by Mr Speaker. They suffered the loss of their baby, Gypsy, who was stillborn in Scarborough hospital. Annika stayed on the maternity ward, with expectant mothers, listening in the most tragic of circumstances to babies crying. Following that, she started to raise money, putting her energies to good use. She raised £9,000 towards the funding of the £134,000 bereavement suite at Scarborough hospital. Does my hon. Friend agree that by directing their energies in such ways, parents can really make a difference to other people and gain support from each other in the process?
I do agree. I had the pleasure of meeting Annika last year, following on from the speech in Parliament. I know that there are many parents like her who want to see some good come out of the loss. It demonstrates the importance of motivating those parents and allowing them to get involved. Very often, the Snowdrop suite at Scarborough hospital acts as a real reminder in memory of Gypsy.
I congratulate the hon. Lady on securing the debate and on speaking in such a powerful and deeply human way. She is talking about parents’ desire to see some good come from their loss. Does she agree that where failings have occurred, part of that critical process should involve NHS trusts communicating with parents on an ongoing basis about the actions and steps being taken to ensure that these tragedies are not repeated?
I certainly do. The more open trusts can be and the more they can share information, the more we are likely to achieve reductions in baby death rates. We need that learning to happen in order to tackle what went wrong and why. Without openness, we will not have that.
Freedom of information requests that I submitted to every NHS England trust indicated that approximately 25% of maternity hospitals still do not have bereavement suites. I am aware that, because of the huge difference it makes to parents, the Government have done much to ensure that funding is available and that action can be taken to tackle the problem.
I congratulate the hon. Lady on bringing this matter before the House. We well remember the Adjournment debates to which she and Will Quince contributed. One in four pregnancies end in loss, and every one of us in this House has seen the reality of that. My own mother had three miscarriages, as did my sister and one of my staff members. We want to take the opportunity to stand together with all those who have loved and lost a baby. We want to say to them, “We acknowledge the loss; we grieve with you; we pray for peace for your family.” Does the hon. Lady acknowledge the importance of having someone with faith in the grieving suite and of the Church assisting?
I know many good examples of that. I shall talk a little later about the Doncaster and Bassetlaw Hospitals NHS Foundation Trust, where a midwife together with the chaplain have developed the most amazing suite of resources to support parents. They have tailor-made the information available specifically for the loss that parents face—whether a miscarriage or a stillbirth—and it was all done in their own time, unpaid and unsupported. There is that level of dedication. For every area where there is bad practice, there are fantastic and dedicated clinicians, midwives and indeed chaplains, providing support to bereaved parents.
Like George’s father, members of the all-party parliamentary group want to make a difference. We welcome the Government’s commitment to a 20% reduction in stillbirth rates by 2020 and a halving by 2030 and the additional resources that have been put into the perinatal mortality tool. We are calling for some additional steps which we believe will help to deliver those targets.
The report that we launched yesterday identifies three key aims. The first is prevention. We need a sustained public health campaign that informs parents of the known risks. We know that parents of twins are three times more likely to suffer loss. Black and ethnic minority groups face much higher rates of stillbirth and loss. Mothers over 40, mothers living in poverty, and teenage mothers all have increased risk of stillbirth or neonatal death.
I am most grateful to both the hon. Lady and Will Quince for securing the debate.
A Dwyfor mother asked me to take the opportunity to express the depth of her feeling. She wrote:
“We don’t just suffer the loss of a baby, we lose a toddler, a child, a teenager, birthdays, Christmas days, mother/father’s days the list is endless as is the grief. The pain of losing a child never leaves you.”
She also wanted me to say that she believes that a third-trimester scan would have made a significant difference in her case.
I am very grateful to the hon. Lady for raising that point.
We know that information needs to be targeted at high-risk groups: messages about smoking during pregnancy, risks associated with obesity, and, of course, the importance of not sharing a bed with your baby, and of putting the baby back to sleep. The success of the Back to Sleep campaign, supported by the Lullaby Trust, has shown what can be achieved in reducing sudden infant death. We now need similar information campaigns in relation to stillbirth, Count the Kicks and reduced foetal movement. I welcome the additional steps being taken by the Department of Health—along with the major charities—to highlight avoidable risks, but it is vital for such messages to be targeted at the most at-risk groups in order to have the biggest impact.
The hon. Lady has done a great service in raising this issue today. I have had letters about it, and I know that many others have as well. What she is saying is very informative to people such as me, who have not had this experience. What struck me particularly was her observation that one individual had had five or six miscarriages before anything actually happened about it. I found that very enlightening, as, I am sure, did many people outside the House.
I think it is shocking. Miscarriage is one of the silent subjects. Other Members will probably speak about it, or will have had their own experiences.
The second key principle involves commissioning. We know that the knowledge and learning are out there. There are some inspirational NHS trusts, consultants, midwives and chaplains who have established best practice in hospitals. Greater Manchester, Lancashire and South Cumbria Strategic Clinical Networks has developed a stillbirth-specific integrated pathway. Doncaster and Bassetlaw Hospitals NHS Foundation Trust has introduced butterfly signs on maternity room doors to alert staff when parents have lost a baby, and has adapted its literature to ensure that they receive relevant information and advice. Abigail’s Footsteps offers equipment such as cold cots to hospitals.
The work that is being done by many charities and dedicated healthcare professionals needs to be shared within the NHS to address gaps in the service when parents are effectively left to fend for themselves. That means that there needs to be better and more effective training for healthcare professionals. It is really not acceptable that such limited pre-qualification bereavement training—sometimes as little as an hour—is given to midwives, given the current stillbirth rates. There needs to be better pre-qualification training for them and also for sonographers and GPs, given the statistics.
There are a number of inspirational examples of good practice in the country, and this weekend they are being celebrated at the Butterfly Awards ceremony in Worcester. If Members have examples of good practice in their constituencies, they should consider nominating them for next year’s Butterfly Awards, so that we can increase their prominence.
I thank the hon. Lady very much for initiating the debate. If there is one thing that we can do in the House, it is break taboos, and she, along with other Members, has done that very successfully. Does she think that it is partly because of that taboo that the quality of training is so poor, and does she agree that the more we talk about miscarriage and baby loss, the better it will be?
I certainly do. Baby loss awareness week has been running for 13 years, but we in this place need to ensure that it affects policy and delivers better outcomes, and that when outcomes do not change, we hold the Secretary of State and the Minister to account. I know that they have recognised the problem, but we will need to see a change in the figures by 2020.
I want to add my congratulations to the hon. Lady and also to express my intense respect and admiration for her moving and evidence-based opening to this debate. She mentioned the Butterfly Awards. Daddys with Angels, a charity that offers online help for those who have lost a baby, is campaigning for a day—
October 15 is the international Wave of Light day, on which parents across the world will light candles in memory of their children. I believe that a lighthouse in Scotland will be lit up for the first time in many years in memory of lost children. I agree that if we talk about the issues and really drill down into the causes, we can start to change the figures in the UK. Key to that is raising the issues here in this place.
Our final ask to the Secretary of State for Health and the Minister is for a bereavement care pathway for parents. That needs to involve an integrated support service, including counselling for parents following the death of a child. I am grateful that, as a result of the work of the all-party parliamentary group on baby loss and information obtained through freedom of information requests, the Department of Health has commissioned Sands—the stillbirth and neonatal death charity—to start developing such a pathway. It is clear that it will require clinical commissioning groups, GPs, local NHS trusts and healthcare professionals to recognise the need for these services and to support such a pathway, working together with the third sector.
I join other Members in thanking my hon. Friend and my hon. Friend Will Quince for bringing this issue to the Chamber today. A mother and father living in my constituency had the nightmare of their baby boy passing away unexpectedly at home. The baby was rushed to The baby boy was rushed to the nearest hospital, which happened to be in a different region. The fact that the death was registered in a different region from the one in which my constituents live has cause them incredible problems, not least in accessing counselling and therapy. Does my hon. Friend agree that geographical and regional boundaries must not prevent grieving parents from getting the help that they need and deserve?
I most certainly do. That is exactly the kind of bureaucratic barrier that needs to be broken down. My hon. Friend’s example powerfully demonstrates the need to have a proper bereavement care pathway in place in every region. It should not matter where someone lives; everyone who needs such support should be able to access it.
In relation to the integrated bereavement care pathway, does the hon. Lady envisage the same level of service for parents who have suffered bereavement post-hospital discharge as the service that parents would receive following a bereavement in their own home?
I agree with the hon. Gentleman. It should not matter what kind of loss a person suffers; they should be able to access that bereavement care pathway whether it is inside or outside hospital.
The hon. Lady has been very generous with her time. Before she concludes her remarks, may I, as an officer of the all-party group, commend her and my fellow officers, including the hon. Members for Colchester (Will Quince) and for Banbury (Victoria Prentis), for breaking the taboo, as my hon. Friend Alison McGovern has said? I also commend Antoinette Sandbach for her bravery in bringing this important issue forward for debate in the House. My daughter, Lucy, would have been 18 this year. When I became an MP 11 years ago, I intended to raise the issue, but I never had the hon. Lady’s bravery—I just wanted to commend her for that.
I am very grateful to the hon. Lady for her words; I know how important this debate is to her. She has done important work in the all-party group in helping to set out these aims and this vision so that other parents can benefit from our experiences. We know that the energy and commitment of a number of brilliant charities could be brought together with NHS trusts to help deliver the care pathway that is so badly needed for parents such as the hon. Lady.
By breaking the silence and the taboo of talking about child death, the APPG, which is composed of parents who have suffered loss, hopes that the debate will lead to better scrutiny of what is happening in maternity units and primary care relative to child loss. We welcome the additional focus from the Government in this area, but there is more to be done if other families are not to suffer the same grief and loss as so many parents in the UK.
I am sorry, but I am about to conclude my speech.
The time has come to act and to see real change in the rates of child loss. I thank all the charities and the bereaved parents who have worked with us and whose expertise has helped to inform this debate. I know that other Members will have their own personal contributions to make.
Order. Just before I bring in the next speaker, may I suggest that, although I am not imposing a time limit, we should aim to speak for no more than 10 minutes? In that way, everybody will have a fair speech time, and things will be equal across the Chamber.
I want to start by paying tribute to the hon. Members for Eddisbury (Antoinette Sandbach) and for Colchester (Will Quince) for securing this debate. This is probably the hardest speech that I have ever had to write and deliver.
This week has been a tough week, as I had never heard of Baby Loss Awareness Week but it has been all around me. There have been online discussions and commemorative badges, and we have a debate in the Chamber today. I have struggled in a debate with myself about whether I should contribute today, as it is such a personal issue, and whether I want to share my very personal experiences. The absolute truth is that I struggle to talk to my family and very close friends about this, but during the events of this week, I can see that a large focus is on people talking about their loved ones, supporting each other and making sure that, when needed, important issues are raised and addressed.
I thank all my friends who have come into the Chamber today to support me as they know how hard this is for me. I also want to apologise to my many friends who I have not told about this. It is not because I do not want them to know or that I am embarrassed; it is just because I find it so very hard to do so. Ever since I was elected, I have always said that I want to be the kind of politician who is willing to share my experiences—not for therapy, but to empower others and to seek to change things for the better. Lewisham bereavement counselling service tells me that it has a two-to-four month waiting list, and that just is not good enough.
I guess that now is the time for me to talk about and pay tribute to my little angel, Veronica. When I was 16 years old, I became unexpectedly pregnant. At first, I was terrified and even debated having her adopted, but during my pregnancy something changed—I became so attached; I was excited; I was going to be the best mum ever. Me and my partner at the time named our baby girl Veronica. We could not wait to meet her. I went full term and was 10 days overdue, so they had to induce me. I was in labour for a long time. I was sick, tired and in a huge amount of pain.
Veronica’s heartbeat was checked regularly and everything was fine, but once I was dilated, the staff checked for her heartbeat again and could not find it. This went on for about 20 minutes, checking with different machines because the staff were not sure whether the equipment was broken. Eventually, the doctor was called and I was rushed to the emergency room. I had to push, and forceps was used to get her out. The umbilical cord had been wrapped around her throat for the whole 20 minutes. She lived for five days, but we had to agree to the life machine being turned off. I got to hold her then for the first time until her heartbeat eventually stopped. She stayed alive for hours. I never wanted to let her go.
My baby awareness week is every year from 22 to
After Veronica was taken from me, my coping mechanism was to chuck myself into college and work. I could not talk about it; my heart was broken. I do not have children now because I have lived with the fear of the same thing happening again, and I just could not go through it twice. I have to say that, as a young woman going through this, I felt as if most people looked at me as if I should be grateful—I was not and I am not. It felt like every organisation I dealt with gave me that same message. Every time I wanted to campaign to highlight the problems that led to her life being taken away so unfairly, I was treated like a kid, not a grieving mum. I was her mum. I also hoped that, one day, I would be her best friend. If she was alive today, she would be 23 years old. The pain does get easier to deal with over time, but it never ever goes away.
I really welcome this debate and genuinely pay tribute to Members for bringing it forward. I hope that, one day, no one else has to endure this pain. I want my experience to be heard by young women in my constituency and across the country who have been through this, or who may go through it in the future, and to just say to them, “You’re not alone.”
I hope that the whole House will read the speech of Vicky Foxcroft and feel that she has done something incredibly brave and courageous today. To my hon. Friends who have proposed this debate, I say that nothing but the greatest respect is due. To my hon. Friend Antoinette Sandbach, who talked about this with such courage and straightforwardness, I say that all our thoughts are with her and all the other parents who have suffered these terrible losses.
I do not think that it is possible—having heard the hon. Member for Lewisham, Deptford I know that it is not possible—for anyone who has not suffered the unbearable tragedy of the loss of a child truly to understand the grief, the pain and the hopeless feelings that it must involve. I therefore warmly congratulate my hon. Friends the Members for Eddisbury and for Colchester (Will Quince) on securing this very important debate.
I will, if the House will allow me, speak about two issues. For the past 15 years, I have worked with a wonderful charity in my constituency that is very close to my heart and I greatly admire. I am patron of Group B Strep Support. I first became aware of the work of the charity in 2003 when its founder and chief executive, Jane Plumb—a remarkable woman—came to see me to raise the issue of group B strep. Jane and her husband, Robert, lost their middle son, Theo, to a group B strep infection in 1996 less than a day after he was born.
I learned that group B strep is the UK’s most common cause of serious infection in newborn babies. It is the most common cause of meningitis in babies under three months, and also causes sepsis and pneumonia. It is truly shocking that on average in the United Kingdom one baby a day develops group B strep infection, one baby a week dies from group B strep infection, and one baby every two weeks survives with long-term disabilities. It is even more shocking that most group B strep infections in babies can and should be prevented. The parents of these precious babies and their wider family live with the consequences of their baby’s unnecessarily horrible illness for the rest of their lives.
The right hon. Gentleman will know of the case of my constituents Fiona Paddon and Scott Bramley, whose son Edward tragically died at just nine days old from a group B strep infection. As devastated as they were and still are, they have channelled their grief into campaigning work and on a petition that has reached almost 250,000 signatures. Does the right hon. Gentleman agree that there is an urgent need for more consistent and effective screening, and that the risk factor strategy by which we have assessed this infection to date has failed to reduce the number of instances and should be reviewed?
I certainly agree, and I am grateful to the hon. Gentleman for talking to me last night. I look forward to working with him on this terrible illness and to joining him to present the petition when it comes along.
I have to say to my hon. Friend the Minister of State—he is not only my hon. Friend, but a real friend—who will be responding to debate, that what I have to say is not meant in any disrespectful way to him, but I have what can only be described as “issues” with the Department of Health about this matter. I have made representations on the issue to Governments of both complexions, and it has been an uphill, pretty unrewarding and generally lowering experience. Since the time of an Adjournment debate introduced by the previous Prime Minister, the former Member for Witney, on
The campaign has been pushing since 2003 for the enriched culture medium test to be made available, and I would like my hon. Friend to note that the Government committed to making the ECM test available on the NHS from
The charity has one overarching objective: to eradicate group B strep infection in newborn babies. To achieve that objective, which is frankly military in its clarity and precision, the charity informs and supports families affected by group B strep, educates the relevant health professionals and pushes for improvements. The charity has virtually single-handedly raised awareness of group B strep from virtually nothing to a position where one in 10 new and expectant mothers had heard of it in 2006, and five in 10 new and expectant mothers had heard of it in 2015. Amazingly, the NHS does not routinely provide information about group B strep as part of standard antenatal care, which makes that a significant achievement for a small charity. The charity has covered for an inexplicable shortcoming on the part of the NHS.
From the very start, Group B Strep Support has pushed for improvement to policy and practice, and it has done an extraordinarily good job. It is my view that the reason for the shortcoming is a fundamental disagreement between doctors, and we all know what that means. It is not clear to me why Ministers do not simply override this and order the test, which would save lives, and spare the tragedy and agony of those involved. I know that the Government say that they are committed to finding a way forward, but it is taking them a very long time to get there, and neither I nor the charity are one bit satisfied by the progress. When my hon. Friend the Minister winds up the debate, will he particularly mention group strep B and give us some hope that that cause will be considered?
The most wonderful young constituent of mine, an adorable girl aged 14 named Emily McStravik, came to see me at my surgery 10 days ago with her mother. Emily is a miracle child who survived two strokes at the age of 18 months. I shall be sending my hon. Friend the details of Emily’s case and the wider case for dealing with childhood stroke, which needs to achieve greater prominence and understanding. Stroke is one of the top 10 reasons why children die, and an alarming number of children who have had a stroke are misdiagnosed or sent home. There is no greater honour or privilege that Members of Parliament can have than to raise on the Floor of the House a child’s story and talk about her remarkable courage and survival. I would be grateful if my hon. Friend would examine carefully the information that I will be sending him from Emily and her family.
Mr Deputy Speaker, 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.
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.
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.
It is an honour to co-chair the all-party parliamentary group on baby loss and a privilege to follow 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 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.
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?
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.
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.
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.
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?
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?
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 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.
I congratulate the hon. Gentleman, 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?
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 Ben Gummer, my hon. Friend Victoria Prentis, who is not quite in her place, and 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.
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.
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 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.
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.
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?
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.
It is a pleasure to follow such an excellent and passionate contribution from Will Quince. This is such a sensitive and important subject. I congratulate him and Antoinette Sandbach on securing the debate in this important week, and on speaking about their own personal experiences. I also pay tribute to those other brave Members who have shared their personal experiences so eloquently today: my hon. Friend Vicky Foxcroft, Patricia Gibson and my hon. Friend—my very good friend—Mrs Hodgson.
In Hull the levels of stillbirth and neonatal deaths are higher than the national average. There is so much more that needs to be done, as we have heard. I want to put on the record my tribute to the excellent work in supporting parents of the Hull and east Yorkshire branch of Sands. I also pay tribute to the Lullaby Trust, under the inspirational leadership of Francine Bates.
I want to go back to the issue that the hon. Member for Eddisbury talked about at the beginning of her contribution: injustice. We know that the trauma of losing a baby can be compounded by what happens next. I want to share with the House the story of my constituents Mike and Tina Trowhill, who came to tell me about what happened to them. They explained that their baby son William had very sadly died in 1994, which was a long time ago. They were told at the time that when he was cremated there would be no ashes. Many years later, Tina discovered that William’s ashes had in fact been retained—they were never returned to her—and that somebody had scattered them without her knowledge. That was very sad and bewildering. Why would somebody do that? It soon became clear that it was not a one-off incident.
Tina has worked relentlessly in Hull and the wider area to help the many other families who have discovered that their baby’s ashes were not returned to them and were scattered without their knowledge, or that there is still a mystery as to where the ashes are. Tina set up the local Action 4 Ashes group, which now has 420 members. She has discovered that many families were told by NHS clinicians and nurses that there would be no ashes when their babies were cremated. Many families have since discovered that the ashes were scattered. Over 50 sets of ashes are still held by the Co-operative funeral service and have not been returned to the families. Cases are now coming to light in which babies appear to have been transported to the crematorium without the use of an undertaker. Tina has helped families submit forms to the local authority seeking information about what happened to those babies. She has submitted over 50 such requests so far.
It is clear that this has happened not only in Hull, but up and down the country, for example in Scotland and Shrewsbury. The local authority in Shrewsbury rightly held a local inquiry to find out what happened and get answers for local families. Tina and I decided to ask Hull City Council for a similar independent inquiry. Although initially sympathetic, the council decided that it was not willing to hold such an inquiry. We challenged that, stating that it was not okay for the local authority to investigate itself and that it had to be done in an open and transparent way. But the council said no. It was not willing to have that local inquiry.
I therefore raised the matter with the previous Prime Minister, David Cameron, and asked what he thought about it. He expressed to me that he thought it must be absolutely dreadful not to know what happened to a baby’s ashes and that something should be done. Eventually, Tina and I went to see the then Justice Secretary, Michael Gove, who I think was genuinely moved by Tina’s plight and by hearing about the many families in Hull who still did not know what happened. Tina made it clear that she wanted a local inquiry so that those families could get answers. On
“I am pleased to be able to tell you that my fellow Secretaries of State at the Department of Health and the Department for Communities and Local Government have agreed with me that there is a need for an historic investigation into the practices relating to infant cremations in the Hull area, and we have today jointly written to the Chief Executive of Hull City Council asking him to commission this.”
As Members can imagine, we were delighted to have three Secretaries of State acknowledge that the families in Hull deserve to know what happened. It was excellent news.
However, two issues rightly remained of concern. One related to jurisdiction. It was not just about the local council, which had responsibility for the crematoriums; it was also about the role that the national health service had played. It was about the training needs and anything else that might come out of an inquiry. It was therefore important that the health service was involved. There was obviously an issue about how private funeral directors would be compelled to take part in any investigation. It was clear that there were some issues that needed to be addressed.
The other issue, which I had a lot of sympathy with, was the cost on holding an independent inquiry, which we know can be expensive. We also know that local councils are under enormous financial pressure at the moment. I supported Hull City Council in returning to the Ministry of Justice and asking for clarification and assistance on the two points of jurisdiction and available financial help. That all seemed to be going well, and I thought those were genuine issues that the Department would deal with.
The letter from Hull City Council said the council had carried out investigations and was satisfied that everything that could be done had been done. Reading the letter, it was clear that the council had not really engaged fully with the problems around the NHS and funeral directors, and it certainly had not engaged fully with the families. In recent years, we have become a very much more open country, and we are less willing to take on trust the word of authority figures. Organisations left to investigate themselves rarely see the need for independent scrutiny of their actions; we only have to look at cases such as Hillsborough. Organisations that investigate themselves almost always find nothing much wrong and no one answerable for any error that is owned up to. “Nothing to see here. Go away. Move on” could be the motto of that culture.
The nearly 100 families in Hull who have come forward are not just going to go away and accept that they will not get the answers to their questions about what happened to the ashes of their deceased babies. A proper independent inquiry from outside the council—as they had in Shrewsbury—to ascertain whether more can be learned is the least those families deserve. If we do not learn the lessons of the past, there will be less confidence about whether measures proposed by Ministers to reform practices at crematoriums will be enough. I really do not understand what the Secretary of State for Justice had to gain by closing down the prospect of proper independent scrutiny of what went wrong in Hull.
In this week, in particular, I would ask the Minister to put himself in the shoes of those families in Hull who want answers and justice. There are three key demands. First, my constituent ought to receive an apology from the Secretary of State for Justice. Secondly, the Secretary of State should give her the courtesy of a personal meeting, just as the previous Secretary of State did. Thirdly, the independent investigation into what happened to the ashes of the babies of over 100 families in Hull should be reinstated forthwith, with funding from the Government to ensure that it can go ahead.
What an honour it is to follow that speech by Diana Johnson. She and I have worked closely together over the last year on difficulties relating to infant cremations, and I very much listened with interest to what she had to say.
When my son died, I was told by our consultant that, one day, it would be possible to put my grief in a box and open the box only when it suited me. Obviously, at the time, I thought she was completely insane; now I realise it is possible to have an element of control over lifting the lid in public—although it is not one I have exercised particularly well today.
Over the years, I have talked about my experiences to raise money for charities, including mental health charities, and I have learned that nothing opens those wallets quicker than a few tears. I have also trained hundreds of midwives for Action on Pre-eclampsia; midwives are fairly used to emotional mothers, so the lid can be fully lifted with them around.
It is an honour to be vice-chair of the all-party group and to have been there at its conception one very late night in the Tea Room. We have well and truly lifted the lid this week in Parliament, which is an achievement in itself. However, just as importantly, we have succeeded in enlisting Health and MOJ Ministers—certainly to date—to our cause. The emotion of the Secretary of State for Health was obvious to all yesterday, and I was pleased to see him here earlier in the debate. The charitable fundraiser in me did wonder whether, next year, we should ask a well-known tissue manufacturer to sponsor Baby Loss Awareness Week in Parliament.
In brief, my story is that, following two miscarriages, I developed severe pre-eclampsia and HELLP—hemolysis, elevated liver enzymes and low platelet count—syndrome during my third pregnancy 16 years ago. My son died soon after he was born, and for some time it was not at all clear whether I would survive. To put that in context, my father was slipped from this place at a time of enormous difficulty for the Government, which shows that my condition was clearly very serious. I went on to have two more children, now aged 15 and 13.
With your permission, Mr Deputy Speaker, I would like to touch first on learning points from my own experience and then on some of the work the all-party group has done this year, and finally to make some general points about maternity care going forward.
The learning points from my own experience are out of date, but, sadly, not all of these things have been put right—in fact, most have not. Obviously, physical care comes first where maternal and baby death is a real possibility. However, someone needs to be tasked with the mental care of the whole family, because the death of a baby, as we have heard, leaves deep scars in so many of his or her relations. Memories, clothes and photos make a real difference later, however much they seem like fripperies at the time. Putting bereaved mothers in with live babies is simply not on, however ill they are. Explaining what is going on all the time is critical, and it may need to be done many times to different family members. Medical conditions have to be understood by those who are suffering.
Midwives, as my hon. Friend Antoinette Sandbach said, need considerably more than one hour of bereavement training. They also need training on how to have grown-up conversations on things such as lactation—conversations which were utterly lacking, in my experience. In fact, training all obstetric staff is important, as so many parents go on to have more children. GPs, who are often the first port of call, and other health workers, also need to be aware of the very long-term effects of baby loss.
It is difficult to go back to hospital with whatever condition in the future, let alone one to do with pregnancy. Where possible, parents should not have to tell and re-tell their story at every appointment. HELLP syndrome, which I suffered from, leads to multiple organ failure. I am not a doctor, and I do not really understand what is wrong with me, but if I go to the doctor with a minor condition, I have to go through the whole blinking story again. It would be easy to have a simple flag on my notes so that every time I have my blood pressure taken, for whatever reason, I do not have to re-tell everything.
Fathers, as my hon. Friend Will Quince mentioned, get ignored. We need proper evidence of the effects on relationships of babies dying. We have some evidence, which he touched on, but it is not broad enough or good enough. Let me read from an article about stillbirth in The Lancet this January:
“Fathers reported feeling unacknowledged as a legitimately grieving parent. The burden of these men keeping feelings to themselves increased the risk of chronic grief. Differences in the grieving process between parents can lead to incongruent grief, which was reported to cause serious relationship issues”.
The effects on grandparents should also be considered. My parents had to cope with the loss of their grandchild and the near loss of their daughter.
Access to mental health provision must be standardised, and good practice copied. According to Bliss, 40% of parents of premature babies need some mental health intervention. I would suggest that every one of those whose babies die needs at least an assessment. Relationship counselling should also be offered as part of an automatic deal, although I do not know at what stage that would be beneficial. At the very least, we need evidence on the effects of baby loss on relationships.
The all-party group is made up of individuals with different experiences and talents. My hon. Friend the Member for Colchester is excellent on parental leave. My hon. Friend the Member for Eddisbury knows more than all others about pathways of care. My role this year has, sadly, been dealing with the issue of infant cremations, not least because of a constituency case I had. I am aware that the Minister is not the Minister who should respond on infant cremation, but it is important that we have a cross-departmental and joined-up approach to the issue, and I would welcome it if he could intervene or at least speak to the MOJ about it.
I have been horrified in listening to this debate. I have never lost a baby in my family, but I am horrified and upset. Surely for a mother who gives birth to a child, stillborn or not, that is her baby or the family’s baby, and surely she and the father should have absolute rights about what happens with the cremation and thereafter. I am absolutely horrified that they do not do so at the moment.
I thank my hon. Friend for his helpful intervention.
We in the all-party group welcome the MOJ’s consultation and the subsequent response, which was published just before the summer. It seems that we are—I really hope we are—on the cusp of making some very important changes in this area. I ask that we push for these changes to happen speedily, because they are really important.
I am very grateful to my hon. Friend for letting me intervene during her impressive and important speech. On the back of that comment, I want to inform the House that my colleague the Under-Secretary of State for Justice, my hon. Friend Dr Lee, announced last month the formation of a national cremation working group. It is now working with all interested parties, and it intends to take evidence from Members of the House. I strongly encourage all hon. Members with such an interest to participate.
In that contest, may I give the House a few more examples from the response of the MOJ that we feel are particularly important to take forward speedily? We hope that the MOJ will provide a statutory definition of ashes to make it clear that everything cremated with a baby, including personal items and clothing, must be recovered. We hope that the MOJ will amend cremation application forms to make explicit the applicant’s wishes in relation to ashes that are recovered. Crucially—I know this point is very important for many Members in the Chamber—we hope that the cremation of foetuses of fewer than 24 weeks’ gestation can be brought within the scope of the regulation, where parents wish that to happen. There is some positive news in this very sensitive area.
Moving on to the future of maternity services more generally, my overriding constituency concern at the moment is the future of the Horton general hospital. In fact, if I am honest, it occupies most of my waking moments, and my children complained during our summer holiday in August that I cannot formulate a sentence without the word “Horton” in it, which I fear is true. This summer, I found the lid repeatedly lifted on my own experiences, as we have real safety concerns about the downgrading of our obstetrics unit at the Horton general hospital.
Since last week, a midwife-led unit remains at the Horton general hospital, but all mothers who might—might, not necessarily will—need obstetric care, which is of course the majority of them, have to go under their own steam or be transferred as an emergency to the John Radcliffe hospital in Oxford. In a blue-light ambulance, that journey of between 22 and 27 miles, depending on the route taken, takes about 45 minutes. If my labouring mothers travel in their own car—of course, not all of them have one—the journey can easily take up to an hour and a half, depending on where they live and on the state of the Oxford traffic. The decision to downgrade the service was taken on safety grounds, as the trust had failed to recruit enough obstetricians, but I must say that I have severe safety concerns for the mothers and babies in our area. In 2008, an Independent Reconfiguration Panel report concluded that the distance was too far for our unit to be downgraded. As I see it, nothing has changed except that the Oxford traffic has worsened. I am keen, generally, that we start to be kinder to mothers during pregnancy and birth, and in my view, that does not mean encouraging them to labour in the back of the car on the A34.
We know that personal care leads to better outcomes. We need to take very careful note of Baroness Cumberlege’s recommendations in her “Better Births” report. She said that births should
“become safer, more personalised, kinder, professional and more family friendly”.
We must use the impetus of events such as this week to drive through her major recommendations.
Chief among these recommendations must be the recommendation for continuity not of care but of the carer, which has been shown to reduce premature deaths by 24%. Professor Lesley Regan, recently elected the first woman president of the Royal College of Obstetricians and Gynaecologists for 64 years, has done a plethora of well-evidenced research on miscarriage, demonstrating again and again that a system of reassurance and continuity, with weekly scans and meetings with a midwife, has reduced the rate of recurrent miscarriage by 80%. That figure of 80% is for women who have miscarried three or four times.
My hon. Friend the Member for Eddisbury mentioned the excellent work being done at Queen Charlotte’s as well. In this context, I am troubled that the sustainability and transformation plans might push us towards larger and larger units with less personal care. I may be wrong— I hope I am—and perhaps it is safer for such giant units to deliver the majority of babies, but I worry that in our case in Banbury decisions are being taken about my constituents without their views being considered and without real evidence of the risks involved.
Everyone in the House today is clearly committed to reducing baby loss, and I have never heard such emotion in a debate. We have evidenced-based research to show us how, in part, to do that. I refer the Minister very firmly to Baroness Cumberlege’s report. Yes, better bereavement care is important. Sadly, some babies will always die, as mine did, but let us really now make a commitment to reduce miscarriages and deaths from prematurity.
I need to be able to tell my constituents that they will not have to suffer as I did.
It is a pleasure to follow the excellent and very moving, yet very practical speech made by Victoria Prentis, who is making me want to cry as well. I think the idea of having a tissue manufacturer to sponsor this debate was quite a good one.
I pay tribute to the hon. Members for Eddisbury (Antoinette Sandbach) and for Colchester (Will Quince) for bringing this very important debate to the House. We owe both hon. Members and their families a great deal of gratitude for raising awareness about this issue through Baby Loss Awareness Week and their commitment to the all-party group.
I also pay tribute to the families who started Infant Loss Awareness Day back in 2002, and to the thousands of families across the country who continue to make a commitment to helping other families through their grief while highlighting the lack of maternity bereavement care in hospitals and in the community. As we have heard, thousands of families each year in the UK suffer the tragedy of losing a child. I hope that this debate may in a small way lead to their not having to suffer in silence and to their realising that they are not alone in their grief. This debate has raised many issues, some of which are uncomfortable, albeit very necessary if we are to change policy to help to reduce infant death, to save bereaved families from isolation and to make sure that the best possible maternity and neonatal care is available to everyone across the NHS.
Before I was elected to this place, I worked for the Pennine Acute Hospitals NHS Trust, which is based in the north-west. It performed some good work in this area, including by holding an annual baby memorial day for parents who had lost babies in the hospital. That was led by our excellent hospital chaplains, who perform such a good service for bereaved parents.
I was asked to attend this debate by my constituent Jane Casey, whose daughter Niamh tragically died shortly after her birth at the trust. Jane has still not received the root cause analysis of her daughter’s death from the trust and, 11 months after Niamh’s death, I am helping her to obtain the report. Jane says:
“The hospital has made me feel that my daughter’s life was not important. I am completely broken and find life a struggle. I keep on going because of my son.”
Those are such sad words, but they are typical of the examples that have been shared today. I really hope that this debate will achieve some practical steps to help other families to avoid such grief.
Health visitors, who have not yet been mentioned, play an important role pre and post-pregnancy. They can give support and practical help, but I feel that their role is undervalued. Since 2015, health visitors have been devolved to local authorities, but in that time there have been cuts to local authorities of nearly £200 million. The former Chancellor of the Exchequer announced a further £77 million cut in 2016-17 and an £84 million cut in 2017-18. The funding that was transferred with the health visiting services was not ring-fenced. I sincerely hope that, under the guidance of a new Prime Minister and Chancellor, the Government will consider protecting this vital service and investing more.
Staggeringly, 68% of local authorities do not commission bereavement support, and neither do nearly a fifth of clinical commissioning groups. This is a vital provision for families at their time of greatest need, and the failure to provide it is clearly apparent in our healthcare structures. I am pleased that NHS England is developing the children’s palliative care funding currency. That includes pre-bereavement care before a baby or child dies, but it sadly overlooks bereavement care after a baby or child dies, so I hope that amendments will be made to that policy.
The Government and the House have the opportunity, by passing the Parental Bereavement Leave (Statutory Entitlement) Bill, which was introduced by the hon. Member for Colchester, to put parental bereavement leave on the statute book. It would give bereaved parents the entitlement to a leave of absence from employment, which is a common right across Europe. That would be an important first step in the right direction as the entitlement should be afforded to all at their time of greatest need.
Although mothers, fathers and families will never forget the children they have lost, Baby Loss Awareness Week is a chance for them to meet other families and share memories in remembrance. The collective sharing of experiences can begin the process of healing and alleviate a small part of the pain. The most powerful thing it provides is the opportunity to speak out and prevent other parents across the UK from suffering the same agony. We, as legislators, must act upon the words that have been spoken today in the House and create a better environment of support for bereaved families.
Finally, I pay tribute to my hon. Friend Vicky Foxcroft for sharing the tragic story of her daughter, Veronica. I am in awe of the bravery and courage she showed in speaking out today. Her bravery and courage were echoed in the words of Patricia Gibson, my hon. Friend Mrs Hodgson, the hon. Member for Banbury and the two hon. Members who brought this debate to the House, whom I thank for giving me this opportunity to speak.
It is a great pleasure to participate in this incredibly important debate. I congratulate my hon. Friends the Members for Eddisbury (Antoinette Sandbach) and for Colchester (Will Quince) on securing it and thank them for the outstanding work they have undertaken on this issue through the all-party group on baby loss. I also thank the other hon. Members who have participated in that group. I pay tribute to the hon. Members for Lewisham, Deptford (Vicky Foxcroft) and for North Ayrshire and Arran (Patricia Gibson) and my hon. Friend Victoria Prentis for their brave speeches.
I have known my hon. Friend the Member for Eddisbury for quite some time. We are friends and were Members of the National Assembly for Wales together. Indeed, we used to sit next to each other in the Assembly, and I witnessed at first hand the terrible devastation she faced when going through the loss of her baby. It is testimony to her courage and resolve that, despite her tragic loss, she is highlighting once again this issue that has affected some of us who are here today. It takes bravery to tackle the silence and stigma that used to exist around baby loss. She was instrumental in tackling it as an Assembly Member, and she has been instrumental in bringing this issue to the national stage and raising awareness for the tens of thousands of families who need help and support. I pay tribute to the outstanding work that she does.
In November 2015, the Secretary of State for Health launched the national ambition to reduce the rate of stillbirths, neonatal deaths, maternal deaths and brain injuries that occur during or soon after birth by 50% by 2030, along with the short-term aim of achieving a 20% reduction during this Parliament—by 2020. That was, no doubt, in large part due to the extraordinary work that my hon. Friends the Members for Eddisbury and for Colchester are doing.
In 2014, there were 3,245 stillbirths and 2,689 infant deaths in England and Wales. The death of a baby is one of the most traumatic events for a mother and father to go through and to deal with the aftermath of. The care that families receive afterwards is vital in helping them to cope in the long term with the loss of their child. That is why I am so pleased that this issue is being raised by my hon. Friends. Awareness is the key to reducing stillbirths and infant mortality, and to tackling the stigma surrounding the issue.
There can be no greater grief than that caused by the loss of a child. It causes psychological conditions that can last years and even a lifetime. The loss never truly leaves you, but how we care for families and individuals can make a huge difference to the future lives of those who live with such tragedy.
I have been through it myself. My wife and I have a wonderful son, but we also lost a child in the 1980s, when there was certainly a stigma around the issue—you just could not talk about it; it was taboo. It was almost an embarrassment to bring it up in public. We could not discuss the grief and sadness that we felt, and we did not have help to deal with what was one of the most traumatic experiences of our lives. It is a devastating experience. I am pleased to say that my son, who is now 34, and his lovely wife Natalie have presented us with a grandchild.
Having children is one of the most marvellous and truly happy experiences for a couple, and something we cherish. Yet, in a moment, we can go from one of the happiest, life-changing experiences to one of the most devastating. When you lose a child, you lose something for which you and your loved one have built a life for and around. You looked forward to going to sports at school, graduations and marriages, and in an instant that cherished future, that child and that happiness are cruelly taken away. I well remember that when we experienced that loss, there was no way to talk about it and all those feelings had to be bottled up. That never does and never can help the grieving process. We, too, were given medical advice to keep trying. I am afraid that that was not quite good enough at the time.
That brings me to the crucial point that, as with many mental health issues, we must communicate to everyone that talking about problems is always a sign of strength and never one of weakness. It is vital that we have the very best care, counselling and services for mothers who have experienced this agonising loss. They must be treated with kindness, sensitivity and respect in the hospital afterwards. It is also crucial that we support fathers who, while being strong for the mother and focusing on her needs, also have to bear the terrible loss.
As I have said, my family have experienced this at first hand. There is a great feeling of powerlessness and anguish when you see your wife, girlfriend or partner rushed into hospital and then into theatre, with no idea of the issue or the outcome, when all you are trying to do is to start your own family. In an instant, the whole world, your family and your life spiral out of your control. You are a bystander to your fate and future, with no power to help your loved ones.
We must therefore ensure that the national health service provides counselling and advice, coupled with statutory leave, so that parents have the best professional support. With that in mind, I wholeheartedly support the efforts of my hon. Friend
Finally, I am pleased that the Department of Health has conducted a survey to map the bereavement provision in England to build up a picture of current provision and identify where the gaps are. It is crucial to highlight areas of good practice and understand the challenges that services face. It is also crucial that the Government are increasing the number of midwives, and I hope that that leads to an increase in the number of midwives who have specialist training in bereavement. That should be a lesson to all our devolved Governments.
A Sands report found that fewer than half of doctors and midwives had had mandatory training in care for after the death of a baby. It is vital that staff are trained in caring for the psychological and physical needs of families, and in counselling them when needed. I hope that the Government commit to going even further in improving mandatory training and in supporting the need for statutory leave for families to grieve for the loss of the most cherished thing in our lives—a child.
It is always with great care that one treads into some areas of one’s own life, but, like many hon. Members, I remember around that 21-week or 22-week point of pregnancy—obviously I am addressing the women Members in the Chamber—having that marvellous, magical moment of what the books describe as a fluttering. You suddenly realise then that the nightmare of morning sickness and the other afflictions that there often are in pregnancy are all about the new life there within you. I suspect that I am not alone in this but that many hon. Members of both sexes have had that moment of looking into the Moses basket and knowing that the next time you look into it that bundle of life that you bear will be in it. That is extremely exciting, and, the truth is, also really rather frightening, especially when it is your first child and so you have obviously never had a baby before. I absolutely cannot imagine what it must be like—something experienced by so many in this Chamber who have spoken today with such great courage—never to have that Moses basket filled with the joy of the child that you have borne for well over nine months.
I warmly congratulate my hon. Friends the Members for Eddisbury (Antoinette Sandbach) and for Colchester (Will Quince) not only on securing this debate but on the great work they have done. No one could been unaffected and unmoved by the incredibly sad stories of the hon. Members for Lewisham, Deptford (Vicky Foxcroft) and for North Ayrshire and Arran (Patricia Gibson). If I may say so—and I do so with no sense of lessening the terrible story we heard from the hon. Member for North Ayrshire and Arran—we were all particularly struck by what the hon. Member for Lewisham, Deptford experienced. I was not just struck with great sorrow, but, I have to say, I also felt anger rise within me. What happened to her was outrageous. I want to be made certain that what happened to her will never happen again to anyone in our society. Obviously, I extend that wish to the experiences related by everyone who brought to this place today either their own experiences or those of their constituents. We must learn the lessons from all of those experiences and do everything we can to make sure that babies do not die in the first place, so that we do not have the high rates of stillbirth that we have heard about or babies dying in the early months of their lives. But in addition, the treatment of both parents, as we have heard so eloquently expressed, must change.
I want to hold a spark of hope in my mind that what happened to the hon. Member for Lewisham, Deptford was a one-off, but sadly I have no doubt that it was not. But I would like to think that, given the passage of time, we can be confident that that kind of experience is now extremely rare. We must all work to make sure that no one ever again suffers what she did or what the hon. Member for North Ayrshire and Arran suffered.
I will make a short contribution about bereavement suites. My remarks are based entirely on the experience of two of my constituents. I first met Richard Daniels for reasons with which I need not trouble the House, and he and his wife have now become friends of mine. Members can imagine, as can anyone who hears their story, that there was much sympathy and real concern at the discovery that when their baby Emily was born in a stillborn birth at the Queen’s Medical Centre, in 2013, there was no bereavement suite. I had both my daughters there; I found that fact quite astonishing, as I know everyone else did who heard their story.
Hon. Members have already discussed this. There is no greater tragedy for any parent than the loss of a child, and, although there are no degrees of grief, I genuinely cannot imagine any greater tragedy and loss than to lose a baby in the circumstances that we are all now becoming more aware of. And then—and, let us be honest, this is almost cruel—while the rest of us are celebrating with balloons and relatives coming along, to be there with that terrible grief, which cannot really be described if it has not been suffered, and to have to sit with your loved one while all that jollity is going on around you because there is nowhere to go to grieve, and to have your private last moments with your baby before they are properly buried, is just appalling. I was horrified to learn from my hon. Friend the Member for Eddisbury that 25% of hospital trusts still do not have bereavement suites.
I am not one of those who says that it is just the role of the NHS to provide those suites. When a terrible tragedy happens, whatever it might be, human beings want to come together to make good of something that has been wholly horrible. I therefore have no difficulty in such circumstances with the idea of parents working hand-in-hand with hospital trusts that do not have a bereavement suite to create one.
Nottingham University Hospital Trust did much to make sure that when Richard and Michelle Daniels decided that they would raise money to fund such a suite, it was a relatively easy journey. It was not all easy—there were many bumps along the way—but they got through it. They started with a plan to raise £25,000 and within 18 months had raised more than £150,000. They did so by a variety of fundraising methods that we will all be familiar with. Emily died in 2013. They finally opened the Serenity suite at the Queen’s Medical Centre, with real joy and pleasure, in April this year. Such has been their dedication to Forever Stars, the charity that they founded, that even though they said that the fundraising would end, as they have been contacted by parents from other parts of the east Midlands—notably, from Derby, where there is no bereavement suite—they have decided to resurrect Forever Stars. They are embarking once more on a huge fundraising exercise to open a bereavement suite. I urge them to continue—I know they will. It is right that parents are involved. However, it is equally right that all those hospital trusts that do not have bereavement suites should now get on with getting them. They should not rely on a parent who has suffered such terrible loss to spark them into taking action to make sure that those suites exist and are fully equipped and their staff are fully trained.
I offer my absolute congratulations to all those who have spoken, and in particular to those who have laid bare the worst moments of their lives. They have put those experiences forward so that we can say to the Government—and I know that the Minister will be listening—that this is an area in which it is time for action, for all the reasons and in all the ways that have been described, as it is not just about bereavement suites. We must take that action so that we can be proud, as a nation, that we are reducing the number of babies who are born dead or who die in the first months of their infancy, and we are doing the right thing by their parents and families, for the sake of the future that they looked forward to but has been denied to them and their children.
I pay tribute to my hon. Friends the Members for Eddisbury (Antoinette Sandbach) and for Colchester (Will Quince). My constituency neighbour, my hon. Friend the Member for Eddisbury, made a courageous and gracious speech; my hon. Friend the Member for Colchester made a powerful and practical one. The number of colleagues in the House who have shared their personal experiences shows how many people across the country have been affected by this issue and the great potential there is to make a real difference to so many people’s lives by bringing it forward for debate. I pay tribute to my hon. Friends for doing that.
I add my tributes to those of other hon. Members to the contributions from my hon. Friends the Members for Banbury (Victoria Prentis) and for Gower (Byron Davies), and the hon. Members for Lewisham, Deptford (Vicky Foxcroft) and for North Ayrshire and Arran (Patricia Gibson). They were truly moving. I have never before in more than six years seen so many Members so visibly moved in the Chamber.
I also pay tribute to the many midwives, consultants and other NHS staff, who in many cases provide good medical and bereavement care to families who have experienced stillbirth and miscarriage. As we have heard, for many people, losing a child is the most difficult time in their lives. High-quality, empathetic care is vital. Thanks should go to all those in this country who work with such dedication and commitment in this arena.
I want to tell a constituent’s story that shows that, yes, the NHS does in part provide extremely good care, but also that it requires more rigour. I received a letter from a constituent whose daughter lost a baby at 20 weeks. She had had excellent care from the gynaecological consultant and the hospital staff, who treated the loss very sensitively, but there were failures in her care. My constituent writes:
“Unfortunately the symptoms leading to the loss of the baby occurred at a weekend. Protocols about sending her straight to the gynae department were not followed. (There was a chance that the pregnancy might have been saved). Nor were other protocols, so that, for instance her midwife hadn’t been informed and rang up”— that must have been some time later—
“asking why antenatal appointments hadn’t been kept. It took a year for my daughter to get the specialist follow-up counselling that should have been offered immediately and she didn’t know she was entitled to some maternity leave.”
That shows, as my constituent says, that there was a “lack of joined-up communication” between different physicians, who were there to assist her daughter. I understand that hospitals in the area are improving the training of staff and support for bereaved parents, but that happened in a large city. In this day and age, that care should have been better. I pay tribute to that young lady because she is setting up a new branch of Sands in her area. It has been wonderful to hear today of the personal experiences of so many Members who, in the course of assisting others, will relive them time and again and put their energies into such organisations.
Stillbirth is a taboo subject but, thanks to this debate, decreasingly so. Stillbirths affect the whole family and, as my constituent says, the
“wider social and work contact groups…Mothers losing babies suffer grief compounded by feelings of guilt and inadequacy” and
“suffer hormonal effects whilst still trying to hold down jobs. I myself”— she is the mother of a daughter who lost a child—
“have found this time emotionally very hard…Surely with more openness and appropriate training of staff our country’s shameful record of stillbirths could be improved. Mental health of bereaved mothers would be improved, resulting in less cost and burden to our health services…my daughter had an undiagnosed streptococcus infection. If screening for this during pregnancy were introduced less babies would be lost.”
I therefore support other Members who have called for better screening.
As an adjunct to the contribution of my hon. Friend the Member for Colchester, who mentioned smoking and obesity advice for mothers during pregnancy, may I, as chair of the all-party parliamentary group on alcohol harm, ask that advice on drinking alcohol during pregnancy is added? The chief medical officer recommended earlier this year that the best advice is simply not to drink alcohol during pregnancy because, as the all-party group has heard, different mothers respond to different levels of alcohol very differently. There has been inadequate publicity regarding that clear recommendation, which I welcome because it clears up decades of confusing advice.
I should like to add my support for one or two points that have been mentioned. Finally, I want to mention one other issue that is still a taboo that we must bravely address and endeavour to break in this country. A quarter of a million miscarriages occur every year. As I have said, it is not only the mothers who feel the loss and grieve and mourn when a miscarriage occurs, but fathers, grandparents and the wider family. They need help too.
Statistics cannot compare with the power of personal experiences such as those we have heard today, but to frame some of the problems encountered by women who miscarry, I have a Miscarriage Association survey of 300 women. Forty-five per cent. of the women surveyed said that they did not feel well informed about what was happening to them physically; only 29% felt well cared for emotionally; and nearly four out of five—79%—received no aftercare at all. The association has noted that access to information and emotional support has been shown time and again to help people to cope with the experience of loss, but that we need to make such support available later if needed. The association has also noted that what was said to grieving women and men was not always important; it was just enough that someone was listening. By having this debate and hearing so many individual experiences, I hope the House has shown to the nation that we are listening and that we care.
Another issue that has been raised is how unborn children are treated before the 24-week stage. As we have heard, when a woman has had a miscarriage, she can be in an extremely vulnerable state. As my constituent has said, women are often not in hospital—in fact, only 18% of miscarriages occur in hospital. As such, a mother is likely to ring up the hospital for advice on what to do, particularly to ask what they should do with the miscarried child. It is of grave concern that there appear to be no strict guidelines on how to advise women in such circumstances.
Zoe Clarke-Coates of the Mariposa Trust, an organisation set up to assist those who have experienced baby loss, has told my office recently that she regularly receives calls from women who have been advised to flush the miscarried foetus down the toilet or put it in a jar in the fridge. That is extremely distressing and traumatising for families. Some women have had to buy new fridges afterwards because it has upset them so much.
Hospital mortuaries need to be available for the foetuses for the unborn child to be properly taken to and stored at the request of parents. The staff who take those calls need to have training across the board to be aware of that. Mortuaries need to be open seven days a week for that purpose and it is important that a directive driven by the Government is given to that effect, and that it is not left to trusts to set up their own systems, which has clearly been completely unsatisfactory to date.
The issue of stillbirths has been raised, with people having to be on wards with celebrating families. Another problem is that women who have suffered miscarriage use the same early-care pregnancy unit. When I had a miscarriage at 16 weeks, I had to sit next to women who had scan photographs. It was very difficult. That must be considered more seriously by medical staff.
The hon. Lady makes an extremely good point. It is vital that we support women in appropriate settings for their situation. As other Members have mentioned, for women who have lost their babies inside the womb but need to go through labour, separate wards should be a priority. They might need to be in hospital for several days. To hear other women around them with their babies must be very distressing. Hospitals need to create better spaces for women at all stages in their pregnancies in such situations.
With your permission Madam Deputy Speaker, I would like to share my own experience. As I told the House earlier, I was in hospital for a considerable time because I had been very ill. After I was in intensive care, I was put in a post-natal ward with people with babies. I was in a separate room, but I had to share the bathroom, the midwives and all the other staff, with mothers of live babies. I found it terribly difficult when nice people who had not been told, who were bringing me cups of tea, food and all sorts of care, repeatedly asked me where my baby was. That was so distressing.
My heart goes out to my hon. Friend. The compounding of grief in that way is so unnecessary.
Families who have lost babies have spoken about the importance of acknowledging their child’s life. Unfortunately, this is an area where the law adds to distress. Under current UK law, a baby is effectively only considered a person at 24 weeks. This often means that that acknowledgement is not there as it could be. I have even heard of parents lying about the gestation period in order to try to obtain a birth certificate. Alongside other hon. Members, I appeal to Ministers to look again at this. As modern technologies improve, unborn babies are increasingly viable earlier than 24 weeks. The law should move not only with technology, but compassion. I ask Ministers to look at that, too.
There is one last point I would like to mention. It is very sensitive, but I feel I need to mention it. It is the taboo I mentioned earlier, but as one colleague said, if there is one thing we can do in this House it is break taboos. Parents can also suffer a deep sense of loss and bereavement when their longed-for child is not lost during pregnancy due to a miscarriage or stillborn, but due to a disability being diagnosed while their child is in the womb, leading them to have to make the often heart-rending decision to have a termination, sometimes late in pregnancy. There is little, if any, bereavement support or adequate counselling for such parents either before they make that decision or sometime after, yet they too have lost a much-loved child.
In 2013, the all-party pro-life group conducted a detailed, year-long inquiry into abortion on the grounds of disability. I have a copy here with me today. We were repeatedly told by witnesses about the lack of proper counselling and bereavement care for such parents should they want it, which many do. We were also told of some examples of very good practice. One parent told us that they had had a funeral service, which helped enormously. Another told of how they were able to bathe their child before the child was appropriately cared for following the termination. Other witnesses were amazed that this kind of care was available, because they had received none at all. One of our report’s key recommendations was that appropriate bereavement support and counselling should be available for all parents who want it in such situations, even if it is some time later.
I regret to say—I am following slightly in the footsteps of my right hon. Friend Sir Nicholas Soames who spoke earlier about an uphill struggle—that I have had an uphill struggle in trying to gain the attention of the Department of Health on this issue. I thank hon. Members who have raised their losses in this debate. I hope now that the Department will consider it. Our report was issued in 2013. After the deeply moving Adjournment debate led by my hon. Friends the Members for Eddisbury and for Colchester, I spoke with the then Minister responding to that debate. We agreed that I would send the report to the Department of Health after the debate, which I did. Unfortunately, I received no reply. I sent a reminder some time later. Again, I received no reply. I hope that as a result of today’s debate, the Department of Health will take seriously the additional point that parents in this situation need the same kind of care and support as the others who have been spoken about in this debate today.
First, may I apologise? I very much hoped to be here at the beginning of the debate, but we had a three-and-a-half hour meeting of the Home Affairs Committee. Due to very poor chairmanship, it dragged on. I was chairing it at the time, so it is entirely my fault.
I pay tribute to the hard work of my hon. Friends the Members for Eddisbury (Antoinette Sandbach) and for Colchester (Will Quince). I was lucky to have caught many of the emotional speeches in this debate, which has been extraordinarily well informed by personal experience. It has shown the House at its best. It has also shown some quite extraordinary systemic insensitivities within the health system that can only make a tragic outcome even worse for parents experiencing the grief of baby loss. We must do so much better.
This is a big and partly hidden problem. The rates of prenatal, perinatal and post-natal mortality in this country are appalling and shameful. We rank for stillbirths 33 out of 35 developed nations in the world. One in every 200 babies dies as a result of stillbirth in the UK, which is 15 times the rate of mortality for cot deaths, an area on which we have made huge progress. We have heard many statistics so I will not quote many more, but there is a 25% variance between mortality rates in different parts of the country. That is a cause for great concern in itself. We need to be doing better as a nation, but certainly we need to be doing much better for certain parts of the country that do not deserve to be lagging so far behind in the progress that has been made elsewhere. We have heard that that is down to a whole host of reasons, including poor and patchy monitoring during pregnancy and a shortage of specialist midwives in some parts of the country, but at the end of the day 4.9 out of every 1,000 live births are stillborn. That figure must come down, because it has stayed stubbornly high for too many years.
I welcomed the Secretary of State’s pledge in March this year to seek to halve the number of maternal and baby deaths by 2030. If successful, that would save some 1,500 more lives every year. I welcome the progress made in giving out information and advice leaflets to all expectant mothers by week 24, but for reasons I will come on to in a moment, that is too late. We need to do better.
Smoking is a serious cause of baby loss. The self-induced poison of smoking during pregnancy, and in too many cases smoking excessively, has been attributed to 2,200 pre-term births, 5,000 miscarriages and 300 perinatal deaths. There has been progress and I pay tribute to the work done in this area. My hon. Friend Fiona Bruce mentioned the progress on foetal alcohol spectrum disorder. The all-party group, on which she and I serve as officers, produced a report on this recently. We have visited hospitals with the charity that promotes this subject to give clearer, better and more high-profile advice to women about what is acceptable and potentially harmful about the use of alcohol during pregnancy. Progress has been made, but we need a lot more. I contrast the lack of progress on baby loss with the great progress made on cot deaths. The very high-profile cot death campaign, some decades ago now, had a huge and very quick effect.
The brief we have received from Together for Short Lives mentions the appalling figures for bereavement support, which we have heard about—that 17% of clinical commissioning groups and 68% of local authorities do not commission bereavement support. This is not something that happens just in a medical environment; it happens when people are at home and maybe coming into contact with other council services, yet it does not happen in two thirds of local authorities. There is also the psychological and bereavement support in neonatal services, or rather the lack of it. The figures from Bliss show that 41% of neonatal units said that parents had no access to a trained mental health worker, while 30% of neonatal units said that parents have no access to any psychological support at all and one third of neonatal intensive care units, which look after the smallest and sickest babies, said that their parents had no access to a trained mental health worker.
This is not just about a bit of tea and sympathy from untrained bereavement support; it is about ongoing trauma. We have heard from my hon. Friend Will Quince, for whom this tragedy happened some time ago, that it is still there. It is not something that leaves people, that they grow out of when they leave the hospital or that disappears when they are fortunate to have a healthy baby. It does not. People deal with it in different ways, with different levels of success or not, and those counselling services need to be available.
The figures for perinatal mental illness in this country are appalling. One in six women will suffer from some form of perinatal mental illness. Those are the women who are fortunate enough to give birth to a healthy baby, and we all know about the impact that attachment dysfunction can have on the child and the problems they may have growing up without a proper, good quality attachment with their primary carer. We know, too, from our report by the all-party group on the 1,001 critical days that the cost of not getting that right is £23 billion every year. It is therefore a hugely false economy financially, let alone socially, not to be doing more about this at those early stages.
There are many charities that step in and help on this front, particularly with after-support, and we have heard some good examples. As my right hon. Friend Anna Soubry mentioned earlier, this is not just down to the NHS. A very good charity approached me recently called Aching Arms, which provides free comfort bears to bereaved parents to support their mental health and healing after the loss of a baby during pregnancy, birth or soon after. Significantly, the bears it gives out are gifts from other families who have experienced the loss of a baby, so the parents receiving a bear will know that they are not alone. Each bear has a label attached with information about the charity and signposts to other charities from which bereaved families can seek support that is relevant to them. Thank goodness there are charities doing work like that, but frankly it should not be down to them to be relied on to provide what is some pretty basic, essential health and social welfare care to mums and dads at a point in their lives when they are particularly vulnerable.
What I want to major on—I thought my hon. Friend the Member for Congleton was going to upstage me earlier—is my private Member’s Bill, the Registration of Stillbirths Bill, which I launched in the House on
The private Member’s Bill I introduced in 2014 would have amended the Births and Death Registration Act 1953 to provide that parents may register the death of a child stillborn before the threshold of 24 weeks’ gestation. Twenty-four weeks is an arbitrary threshold. If someone happens to give birth to a stillborn child after 23 weeks, six days and 23 hours, that child never existed in the eyes of the state and is to all intents and purposes a miscarriage. If that child had clung on for another couple of hours and been stillborn beyond the 24-week threshold, it would be a child in the eyes of the state. That is an extraordinary anomaly in the law which we need to address.
As we have heard, some experience loss through miscarriage, often repeatedly, some give birth but routinely experience the pain of losing a child within days, weeks or months, and some go through all the trials and tribulations and the highs and lows of pregnancy, only to give birth to a stillborn child. The aim of my Bill was to help those parents. We have heard of the problems we still face, but the situation is made worse for parents who have stillborn children before 24 weeks because of the arbitrary nature of that figure. There are no central records of exactly how many babies are born in that way; they do not form part of the perinatal mortality figures; and therefore the position with stillbirths is actually even worse than we appreciate, because of those born before 24 weeks.
I do not wish in any way to downplay the importance and pain of a miscarriage, particularly for new parents struggling to have their first child, but those experiences are different. That was brought home to me most starkly by the story of a constituent of mine, Hayley, who came to see me back in 2013 to campaign for the change in the law that I then took up. Hayley was pregnant. For nearly 20 weeks, she carried the child of her and her partner Frazer. She felt the baby kicking. She went through all the other ups and downs of a first-time pregnancy, but sadly, after around 19 weeks, something went wrong, and Hayley and Frazer’s baby died unborn. It was not a miscarriage, and the following week Hayley had to go through the pain of giving birth to a baby that she knew was no longer alive. She had to take powerful drugs to induce the pregnancy. She experienced contractions. She went into Worthing hospital and had pain relief.
I pay tribute to Worthing hospital, which has the safest maternity department in the whole country. It has been rated as such by the Care Quality Commission and we are immensely proud of it. We are particularly relieved, given that many thousands of my constituents and I marched to save it back in 2008, when the idiot primary care trust thought we did not need a good maternity department at Worthing hospital. Despite having the oldest population in the country, if not the universe, in Worthing, we also have the best start-of-life facilities, and we are greatly thankful for that.
The day after Hayley went into hospital, she gave birth to her baby, Samuel—she gave him a name. She held Samuel in her arms. She and her partner took photographs, had his hand and footprints taken and said their goodbyes. Fortunately, Hayley was given good support by the clinical staff at Worthing hospital, as one would expect, and they had bereavement guidance. She has an understanding employer in West Sussex County Council and was also fortunate to find a sympathetic funeral director. The funeral took place two weeks later.
To all intents and purposes, Hayley, with her partner, went through all the experiences of pregnancy and the pain of childbirth endured by any other mother, but they were coupled in this case with the unimaginable grief of a parent who has lost a child before they could ever get to know him. She did not just go through a stillbirth: she had a still baby; she became a mum. The crucial difference is that Hayley and Frazer’s baby is not recognised in the eyes of the state because he was born before 24 weeks’ gestation. If he had been born after 24 weeks and one day, he would have been recognised and the death properly registered in a register of stillbirths, forming part of the statistics I referred to earlier. More than just adding to the statistics, though, that would have been the acknowledgment of an actual, individual life. To add further insult to injury, Hayley had to hand back her maternity exemption certificate straight after going through that experience.
When I launched that Bill, I got, as we all do, a wave of extraordinary, tragic experiences from mums and dads around the country, including one from a woman who had twins, one of whom was stillborn before 24 weeks. The other survived and was tragically born stillborn after 24 weeks, but in the eyes of the law she only had one baby. How absurd is that? That is why the law needs to be changed.
That stark difference surely cannot be right. It adds insult to the unimaginable pain that the parents have already had to suffer. Until the passing of the Still-Birth (Definition) Act 1992, which amended the Births and Deaths Registration Act 1953, the threshold was 28 weeks, so prior to that even more babies went unrecognised in official records. That change followed a clear consensus in the medical profession on the age at which a baby is considered viable. Since then, in fact, there have been cases of babies born well before 24 weeks who have, incredibly, survived.
It is true that there is an informal procedure for hospitals to issue so-called commemorative certificates for foetuses that are not classified as stillbirths. They provide parents with a certificate that records their pregnancy loss before 24 weeks; and Sands, that excellent charity of which we are all in awe, has produced a template for a certificate of births which it encourages all hospitals to adopt. However, it is unofficial and still counts for nothing in the eyes of the state. Since that Bill, there has been a happy ending, because Hayley and Frazer had a bonnie baby daughter called Bonnie, who I am delighted to say is well and healthy.
My Bill would provide for the official recognition and registration of stillborn babies of below 24 weeks’ gestation. It would be based not on a crude time threshold of what is deemed a viable foetus, but on the experience of giving birth. Hayley and Frazer’s baby would be recognised as having existed, and Samuel’s death would have been registered, which would go some way to providing some comfort to parents such as Hayley and Frazer at an unimaginably painful time.
The issues around registration and the line between miscarriage and stillbirth were very much brought up by parents in the online digital debate that we had on Monday. The difficulty of parents having to go to a registry office to register a birth and death of a baby also came up, as it is hugely distressing when parents have to explain what happened to a registrar. The Liverpool Women’s hospital has the ability to carry out those registrations in the hospital; the Minister might want to look at that good practice. I very much support what my hon. Friend is saying.
I thank my hon. Friend for that. The solutions are, frankly, not rocket science; a bit more sensitivity and common sense would go a long way towards alleviating an awful lot of pain and trauma.
The suggestions in my Bill, or a variation on my Bill, would go some way to providing some comfort to parents such as Hayley and Frazer at this difficult time. It would also provide more data to aid the analysis of why stillbirths happen and hopefully suggest what can be done to jumpstart a resumption of falling numbers from last decade’s plateau. For those who say that the physical act of registering such a child alongside those registering a healthy birth could open up wounds and exacerbate the parents’ grief—we have just heard that—I am sure that a more discreet and empathetic procedure could easily be devised. We could even do it online, you never know.
The Bill had nothing to do with changing the law on abortion. It did not propose to change the status quo on the entitlement to maternity benefits or bereavement entitlement, although I think official recognition would make it easier to secure appropriate empathy and flexibility from employers. The Government have already rightly made changes to maternity allowance guidance to ensure that mothers whose babies are stillborn after 24 weeks receive the benefits to which they are legally entitled; the process has been made easier.
The wheels turn slowly. I was making some progress with my Bill. I am particularly grateful to the former Minister, my hon. Friend Dr Poulter, who with his own clinical experience recognised the problems in this area. He worked with me, with various royal colleges and others, and we had a big stillbirth roundtable at Richmond House at the beginning of 2015, involving the Royal College of Obstetricians and Gynaecologists, the Royal College of Midwives, Sands, NHS England, the Miscarriage Association and other relevant bodies. I think we found a way ahead in a hugely complex area that is not easy to solve.
A new law was introduced in New South Wales, Australia, whereby a formal recognition of loss certificate is issued in such circumstances, and it has official status. If we could investigate something like that, perhaps we could get back on track with this problem.
We are talking about something that should not happen and that medical technology and innovation are not required to solve. It is something that should not be subject to the restraints and constraints of funding that might apply within the national health service. We are talking about a bit of common-sense admin, but a really important bit of common-sense admin, for somebody who has had to go through this traumatic experience.
In paying tribute to the extraordinary testimonies we have heard today from people who are far more expert and who have had far more first-hand experience—mercifully—than me, may I gently ask the Minister to put this matter back on the agenda as part of improving the whole issue of baby loss? We could do an awful lot of good for an awful lot of our constituents if we could just get this one simple thing done properly.
I congratulate the hon. Members for Eddisbury (Antoinette Sandbach) and for Colchester (Will Quince) on securing this debate, and I pay tribute to their courage in speaking so movingly about the incredibly difficult circumstances that they, sadly, have experienced personally. It is a great tribute to their character that they responded to such tragic experiences by seeking to do all they can to help others. We have heard from many Members how their constituents have done the same, following their own personal tragedies. I commend the work of the Members who comprise the all-party parliamentary group on baby loss, which has made an important and valuable contribution, addressing both the prevention of baby loss and the importance of offering the best possible care to parents when this happens.
This is the first time that we have discussed baby loss in the Chamber, but the third occasion on which I have responded to a debate on the subject over the past year. Each occasion has shown the House at its absolute best. I would like to take a few minutes to go through some of the compelling contributions.
The hon. Member for Eddisbury talked about the lack of recognition of how miscarriages can increase feelings of loneliness and isolation. I was sorry to hear about the lack of understanding that some people have faced when they have been contacted having suffered a miscarriage. I know from my own experience that there is a propensity to put miscarriage down as “just one of those things”, as we have heard several times today. The hon. Lady made very powerful comments that most parents just want to make sure that whatever has happened does not happen again. There is a recognition—a number of Members spoke about this—that parents sometimes do not feel that they get the answers they need.
It is disappointing to hear the statistic that the hon. Lady revealed that 25% of maternity hospitals do not have bereavement suites. Time and again today, we have heard Members welcome the provision of these suites in maternity units. I know from those I have visited up and down the country what a valuable contribution they make. They are often built following local fundraising and are often born from tragic circumstances. They always seem to receive significant input from parents who have suffered bereavements. I hope we are all agreed that we should aim to get a bereavement suite in every maternity unit.
As the hon. Lady said, one hour of bereavement training for midwives is clearly not enough, and the issue of training and support featured in several contributions. She is also right, however, that there is plenty of good practice out there, which we should disseminate across the country. Her comments about a bereavement pathway were important, and I am pleased to hear that Sands has been asked to look into it. I hope we will hear some good news about developments in that respect.
The hon. Member for Colchester spoke from personal experience with great passion and knowledge about what he believes needs to be done. He is absolutely right that no one who suffers a bereavement should have to go back on to a maternity ward. A number of Members made that point. He was right, too, to say that this is a far bigger issue than just ensuring that we have bereavement suites everywhere. We need to do much more work to understand why there are such disparities in occurrences across the regions and across different ethnic groups. His point that a mother can sense when something is not right was a powerful one. We should always stress how important it is to seek medical advice if there is any scintilla of doubt. The hon. Gentleman was right, too, that every stillbirth and every neonatal death is something that we should learn from. We need consistency right across the bereavement pathway and right across the NHS.
I wish the hon. Gentleman success with his private Member’s Bill, the Parental Bereavement Leave (Statutory Entitlement) Bill. We know that the odds of such legislation succeeding are not great, but perhaps today’s comments and the no doubt eloquent case he will make in support of the Bill will persuade the Government to bring forward legislation of their own.
My hon. Friend Liz McInnes spoke with her customary experience of the health service. She gave examples of some of the best practice in her constituency, but also spoke of the struggle of one of her constituents, Jane, who had been trying to obtain answers following the death of her daughter Niamh, and referred to the gaps in support throughout the country.
Sir Nicholas Soames talked about Group B Strep, which, he said, is one of the most common causes of infection. He told us that one baby a day develops it. That is a shocking statistic, given that, as we know, the infection is largely preventable. The right hon. Gentleman also mentioned childhood strokes and the courage of his constituent Emily. I look forward to hearing the Minister’s response to what he said.
Patricia Gibson has her own personal experience. She very bravely told us about Kenneth, who would have been seven on Saturday. She rightly made the point that people often do not know what to say in such circumstances, and end up saying nothing at all. We hope that the more Members talk about these issues, the less often such situations will arise. The hon. Lady also said that the response that she had received that it was “just one of those things” was not good enough. She talked about the culture of secrecy and the pulling down of shutters, which cannot possibly help bereaved parents who are looking for answers.
My hon. Friend Diana Johnson raised an important issue about her constituent’s son William, whose ashes had been scattered without the constituent’s acknowledge. She talked about her campaign to get Hull council to conduct an independent inquiry into what is apparently a widespread practice in Hull. The campaign was initially successful, and my hon. Friend is right to be furious about the U-turn that has now taken place, with no consultation or warning. We certainly support her campaign to have the inquiry reinstated, and I hope that the Minister will agree to look into the matter and make representations to the Secretary of State for Justice.
Victoria Prentis spoke, very bravely, about her personal experiences. She observed that we often hear that the nature of the public’s interaction with many public services means that people must tell their story again and again. She stressed the importance of relationship counselling, or, at the very least, an evaluation of how bereavement affects relationships. She also spoke with great knowledge about the importance of getting cremation right. I was pleased to hear that a working group is now looking into that.
Byron Davies said that awareness was the key to tackling this issue. He spoke with great sincerity about the fact that he and his wife had felt that they could not speak about their own loss, such was the stigma surrounding it. He rightly said that the medical advice that they were given at the time to “keep trying” was simply not acceptable.
Anna Soubry talked about her constituents’ daughter Emily, who was stillborn, and their subsequent discovery that there was no bereavement suite. She said that it was almost cruel for bereaved parents to have to be in close proximity to those who had experienced successful births, and I think we can all understand that sentiment.
Fiona Bruce highlighted the experience of her constituents, and the lack of joined-up communication in dealings with bereaved parents. She gave some disturbing statistics from a miscarriage survey which found that four out of five women received no aftercare at all. I think it is clear to all of us, given what we have heard today, how important it is for that support to be provided as often as possible.
Tim Loughton spoke with great knowledge of this subject. He mentioned the shocking statistic that 68% of local authorities do not commission bereavement support, and presented a volley of other statistics revealing a lack of access to mental health support across the board. As he said, this is not something that just fades away; ongoing support is needed for parents. He paid tribute to the many charities that provide such support, but rightly said that people should not have to rely on charities to receive it. He also drew attention to his own private Member’s Bill, and to the legal absurdity of the classification of births before 24 weeks. He made, I think, a compelling case for a change in the law.
Finally, let me pay tribute to the outstanding contribution from my hon. Friend Vicky Foxcroft, who showed incredible courage in telling us about her daughter Veronica. We could all feel the pain that she must have felt every day for the last 23 years, and we all admire her bravery in talking about her experience. I am sure that Veronica would be as proud of her mum as we all are today.
As we have heard, this debate coincides with baby loss awareness week, which provides an opportunity for bereaved parents, their families and their friends across the world to unite and commemorate their babies’ lives. I echo the tributes that have been paid to the many charities that do so much to support families through what is possibly the most challenging time that they will ever face. I do not think that any Member can be in any doubt about how difficult it is, having heard the moving speeches that have been made today. I know that the hon. Member for Colchester did not want to single out particular charities, but I shall name four. Sands, Bliss, the Miscarriage Association and Antenatal Results and Choices all do excellent work.
It is a demonstration of the importance of this issue that in baby loss awareness week—as in every week—we know that more than 100 families will experience one of the biggest tragedies of their lives. An average of 15 stillbirths occur each and every day. We have heard from Members that stillbirth is often a taboo subject that many find difficult to discuss. I think we are beginning to change that, but we owe it to all those families to address the issue, and I know that today’s debate is a valuable part of the process. The loss of 100 lives a week in any circumstances is a tragedy, and if it were happening in a particular industry, there would no doubt be calls for action to be taken. That is why the words of the Members who have spoken today about their personal experiences are as important as they are brave.
I followed with great interest Monday’s baby loss debate on Twitter, and I commend the hon. Members for Eddisbury and Colchester for their innovation in facilitating it. The debate offered members of the public from all over the country an opportunity to share their views about this issue, and I want to put on record my thanks to everyone who took part. Twitter and social media generally have gained a bit of a reputation over the last few years for being unforgiving and cruel domains, but Monday's debate showed how that arena can be harnessed to bring about genuinely thoughtful and meaningful engagement with the public.
One of the key themes that emerged from the debate was the fact that this country offers some of the best neonatal care in the world, along with some exemplary psychological and bereavement support services. However, it also made clear that—as we have heard from many Members today and in the past—it does not offer that excellent care equally in every area. There is a great deal of variation across the country, which is why, much to our shame, our rates of stillbirth are unacceptable in comparison with those of similar countries. There has been an enormous amount of progress in reducing the rates of stillbirths and infant deaths in the last century, but it has sadly stalled in recent years. Indeed, according to The Lancet, the annual rate of stillbirth reduction in the UK has been slower than those in the vast majority of high-income countries. Our annual rate of reduction has been 1.4%, compared with 6.8% in the Netherlands. I think we would all agree that that is not an acceptable level of progress, and variability may well be one of the key reasons for it.
We welcome the Government’s commitment to reducing the rate of stillbirths, neonatal deaths, maternal deaths and brain injuries that occur during or soon after birth by 20% by the end of this Parliament, and by 50% by 2030. During the debate that took place in June, the former Minister, George Freeman, confirmed that the first annual report on progress towards meeting those targets was due to be published this autumn. I should be grateful if the Minister would tell us whether that is still the Government’s intention, and when we can expect to see the report.
If we are to see a reduction in the number of avoidable deaths, another key priority, which is linked to the variability of care, is to ensure that there are safe staffing levels in neonatal units. According to the “Bliss baby report 2015: hanging in the balance”, 64% of neonatal units do not have enough nurses to meet national standards, and 70% of neonatal intensive care units regularly look after more babies than is considered safe. Given the strong evidence of a link between staffing levels and babies’ mortality, I ask the Minister to set out what steps the Government are taking to address that. We shall simply not be able to achieve the Government’s laudable ambitions if we cannot provide safe staffing levels in neonatal units.
Another issue that was raised during the debate in June was the investigation of stillbirths. At present, coroners do not have the jurisdiction to investigate the deaths of children who are stillborn to try to understand exactly why the deaths occurred and to inform best practice. As we have heard from many Members today, parents simply want to know what went wrong and whether it will happen again. Members of all parties were encouraged when the previous Minister undertook to discuss expanding the remit of coroners with his counterpart in the Ministry of Justice. I should be grateful if the Minister could tell us how those discussions have gone.
Let me end my speech by focusing on the families who so sadly experience bereavement, and the care and support that is offered to them afterwards. This is another area in which, sadly, there is a great deal of variability, with some families receiving the levels of support and care that we would expect while others have had shocking experiences such as those about which we have heard today. I should be grateful if the Minister could outline the steps that he will take to realise the Government’s commitments on parity of esteem for mental health in neonatal care. No one who has suffered the trauma of losing their baby should be left to suffer alone.
Members in all parts of the House have spoken very bravely and with great passion about their personal experiences. I hope that, following the debate, we shall be able to move forward, continue to break down the taboos, and ensure that every family to whom this happens receives the very best care, both medically and in terms of bereavement support. Families experiencing the very worst of times deserve a system that offers them the very best.
I am humbled to be responding to this debate. It is undoubtedly the most moving debate that I have participated in during the 11 and a half years I have been in the House and I pay an enormous tribute to all those who have spoken, particularly those who spoke of their own personal experiences. I shall touch on that further in a few moments. I want to start by congratulating my hon. Friends the Members for Eddisbury (Antoinette Sandbach) and for Colchester (Will Quince) on initiating this debate during baby loss awareness week. I also commend them on the remarkable progress they have made in launching the all-party parliamentary group on baby loss and on securing cross-party support for it. The group has had an unusually large impact compared with the plethora of other groups, and it has managed to achieve a Commons Chamber debate within a few months of being set up. That is an unusual and impressive achievement by them and the other officers of the group on both sides of the House.
Yesterday, hon. Members from across the House showed tremendous support for the work of the group. This was evidenced by the support from Mr Speaker in hosting a reception in his state rooms which was attended by many of the 21 pregnancy and baby loss charities that are dedicated to arranging support and care for families that go through this terrible experience. Events such as those that have taken place throughout the week here in the House—and indeed on Twitter, as Justin Madders mentioned earlier—help to raise awareness for the families who suffer this loss, often in silence. One of the things that has struck me most about this debate is the determination of those who have experienced such loss, either directly or through their families or constituents, not to allow the issue to remain in the closet.
I would like to address some of the comments that have been made and to applaud the contributions and interventions that we have had today from the more than 30 hon. Members who have spoken of their own personal experiences and those of their constituents. Interestingly, although we have had contributions from 17 Back-Bench women, we have also had contributions from 13 Back-Bench men, some of whom have had personal direct experience as well. Particularly moving have been the contributions from Members who have not raised their experience of this issue in public in this place before. They included the hon. Members for Lewisham, Deptford (Vicky Foxcroft) and for North Ayrshire and Arran (Patricia Gibson), my hon. Friend Victoria Prentis—she might have mentioned it before, but she made another moving contribution today—my hon. Friend Byron Davies and Carol Monaghan. Such personal testimony obviously touches the heartstrings of everyone who hears it, and there was barely a dry eye in the House when they were speaking. I pay tribute to their courage in making so clear the pain that they went through, either recently or some years ago. Foremost among those Members are my hon. Friends the Members for Eddisbury and for Colchester, who brought this matter so vividly to our attention with their speeches nearly 12 months ago.
I shall not go through every contribution that has been made today, but I shall try to refer to many of them in my remarks. In particular, I should like to pay tribute to the hon. Member for Ellesmere Port and Neston for his very thoughtful contribution and for the spirit in which he made it. I shall try to address most of his questions as I continue. Before I forget, I should like to address the question put by my right hon. Friend the Member for Crawley—
I am sorry. Have I got it wrong again?
My right hon. Friend Sir Nicholas Soames asked about progress on screening for group B streptococcus, and I can reassure him that the UK national screening committee is reviewing its recommendation on antenatal screening for GBS carriage as part of its three-yearly review cycle. It will be taking new published evidence into account. We are anticipating that a public consultation will be held on this topic shortly, and I am sure that my right hon. Friend will want to participate in it. Once it has been concluded, we will review the recommendations that emerge.
The loss of a baby is clearly devastating for its parents and the family, regardless of when or how the death occurs. Those experiencing the heartbreak of miscarriage, stillbirth, the death of an infant or the decision to terminate a much-wanted pregnancy need our support and kindness, and the acknowledgement that their child was here for a short time and was loved. I have been deeply struck by the comments about the lack of sensitivity that can occur when such a loss takes place, and it is absolutely right that the Department of Health should encourage best practice across the NHS in order to minimise the distress caused by insensitive conduct on the part of those involved in supporting families at this time.
Such feelings of loss are real, but as has been said, in particular by my hon. Friend the Member for Gower, who explained this dispassionately and clearly, the issues are often not discussed. Many of us do not realise that on an average day in England around 32 women will be diagnosed with an ectopic pregnancy, 15 babies will be stillborn and eight babies born on that day will die before their first birthday. Most of those infants will probably be less than a month old. It is therefore important that we in Parliament discuss the issues around baby loss and the care for those families experiencing such tragedies.
I want to talk about the steps we are taking with the NHS to reduce stillbirths and other adverse maternity outcomes. I also want to talk about what we are doing to support families who experience this loss. England is a very safe country in which to have a baby, and it is encouraging that the stillbirth rate in England has fallen from 5.2 per 1,000 births in 2011 to 4.4 in 2015. In 2014, the neonatal mortality rate was 2.5 deaths per 1,000 births, and the rate of deaths in babies aged 28 days to one year was 1.1 per 1,000 births. Those rates have been steadily declining and are now at their lowest levels since 1986. There is, however, as we have clearly heard from every contribution today, more that we can do, and, as a Government, we are determined to do so.
It is important that we do not accept all miscarriages, stillbirths, pregnancy terminations or neonatal deaths as inevitable, or simply nature taking its course, as has been touched on by a couple of contributions today, because many of them might have been prevented.
When compared with similar countries, our stillbirth rates remain unacceptable. In the stillbirth series of The Lancet, which was published earlier this year, the UK was ranked 24th out of 49 high-income countries. The same publication showed that the UK’s rate of progress in reducing stillbirths has been slower than that of most other high-income countries. The annual rate of stillbirth reduction in the UK was 1.4% compared with 6.8% in the Netherlands. That places us, as we heard from my hon. Friend the Member for Eddisbury, in the bottom third of the table, in 114th place out of 164 countries around the world, for progress on stillbirths.
We also know that the rates of death in some higher risk groups are not coming down. Again, that was referred to by my hon. Friend the Member for Colchester. According to the Twins and Multiple Births Association, stillbirth rates for pregnancies involving twins, triplets or more increased by 13.6% between 2013 and 2014. Multiple births make up 1.5% of pregnancies in the UK—around 12,000 pregnancies each year—but a disproportionate 7% of stillbirths and 14% of neonatal deaths.
We want NHS maternity services to be an exemplar of the kinds of results we can achieve when we focus on improving safety. With a concerted effort, we can make England one of the safest places in the world in which to have a baby. That was why, last November, the Secretary of State launched a national ambition to halve the rates of stillbirths, neonatal deaths, maternal deaths and brain injuries that occur during or soon after birth by 2030, with a shorter-term aim of achieving a 20% reduction in each of these rates by 2020. I am glad that that was recognised by my hon. Friend the Member for Eddisbury and pleased that she will be keeping an eye on the progress that we make each year to achieve those targets.
To support the NHS in achieving this stretching ambition, the Government have announced plans for investment. There will be a £2.24 million fund to support trusts to buy monitoring or training equipment to improve safety. More than 90 trusts have been successful in receiving a share of the fund, enabling them to buy equipment such as training mannequins, and fetal or maternal monitoring equipment such as carbon monoxide monitors and portable ultrasound equipment.
As my hon. Friend the Member for Colchester acknowledged, we are also investing in the roll out of training programmes to support midwives, obstetricians and entire maternity teams to develop the skills and confidence they need together to deliver world-leading safe care. We hope to be able to say more about how maternity services can apply for this funding soon.
We are also providing funding via the Healthcare Quality Improvement Partnership for developing the new system—the standardised perinatal mortality review tool—which, once complete, should be used consistently across the NHS in Great Britain to enable maternity services to review and learn from every stillbirth and neonatal death. That was an important element of the APPG’s vision for the future. We need to develop proper learning and understanding from what goes wrong, and then the lessons learned should be spread to maternity services across the country. As my hon. Friend Nick Boles emphasised, many reports have highlighted that we do not effectively learn from our mistakes. Indeed, the guidelines of the Royal College of Obstetricians and Gynaecologists state that all stillbirths should be reviewed in a multi-professional meeting using a standardised approach on analysis for substandard care and future prevention. That is something that we would like to see taken up.
We must view individual failings as important and recognise the need for accountability, but balance that with a need to establish standard processes that can prevent avoidable mistakes from happening again. In April we established a new independent healthcare safety investigation branch to carry out investigations and share findings. The HSIB will operate independently of Government and the healthcare system to support continuous improvement by using the very best investigative techniques from around the world, as well as fostering learning from staff, patients and other stakeholders.
An important improvement in maternity care is care that is more collaborative and responsive to the needs of women. Several Members referenced the investigations by Sands, the stillbirth and neonatal death charity, which has revealed that 45% of women who raised a concern with a health professional during pregnancy were not listened to and then went on to have a stillbirth. Clearly, that is not acceptable. All women should receive safe, personalised maternity care that is responsive to their individual needs and choices.
The hon. Member for Ellesmere Port and Neston asked where we are on supporting those with mental health conditions through pregnancy. I draw his attention to the announcement in January in which the Government set out that an additional £290 million will be made available over the next five years to 2020-21 to invest in perinatal mental health services. That is funded from within the Department of Health’s overall spending review settlement, and it will go a long way to providing support for women who are pregnant and need mental health counselling both before and after birth.
Last November we asked the national patient safety campaign Sign up to Safety, which was launched by the Government in 2014, to support all NHS trusts with maternity services to develop plans to improve safety and share best practice. In March this year we launched “Spotlight on Maternity”, with guidance for maternity services to improve maternity outcomes. This set out five high-level themes that are known to make maternity care safer that services could focus on: building strong clinical leadership; building capability and skills for all staff; sharing progress and lessons learned across the system; improving data capture and knowledge; and improving care for women with perinatal mental health problems.
In February this year, “Better Births”, the report of the independent national maternity review that was chaired by Baroness Cumberlege, was published, and hon. Members have touched on it today. It sets out that the vision is for maternity services across England to become safer, more personalised, kinder, more professional and more family-friendly. The Department of Health is leading the promoting good practice for safer care workstream of the maternity transformation programme that was launched last July to deliver the vision set out by the national maternity review, and we will set out our action plans shortly.
As my hon. Friend the Member for Eddisbury highlighted, it is vital that we support research into the causes of stillbirths and neonatal deaths so that we can better understand how to identify babies at risk and improve services. In recent years, the Government have invested in research, looking at important questions regarding stillbirths and neonatal deaths. From 2012, the National Institute for Health Research biomedical research centres at Cambridge and Imperial College will have invested £6 million over five years in research on women’s health, including research to increase understanding of the causes of still births and neonatal deaths. We continue to encourage research bids for new studies that will help us to identify babies at risk.
The evidence shows that this stretching ambition cannot be achieved through improvements to NHS maternity services alone. The public health contribution will be crucial. As The Lancet stillbirth series concluded, some 90% of stillbirths in high-income countries occur antenatally and not during labour.
We heard from a number of hon. Members about the need to do more to highlight risks during pregnancy so that women are aware of what they can do while they are pregnant to minimise the risks. When starting pregnancy, not all women will have the same risk of something going wrong, and women’s health before and during pregnancy is one of the factors that influence rates of stillbirths, neonatal deaths and maternal deaths. We know that a BMI of over 40 doubles the risk of stillbirth, that a quarter of stillbirths are associated with smoking, and that alcohol consumption is associated with an estimated 40% increase to stillbirth risk. In addition, the MBRRACE—Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries—report published in June last year showed that women living in poverty had a 57% higher risk, babies from BME groups have a 50% higher risk, and teenage mothers and mothers over 40 have a 39% higher risk.
I will come back to my hon. Friend’s point just as I conclude.
These striking facts are why the Department of Health will continue to work closely with Public Health England and voluntary sector organisations to help women to have a healthy pregnancy and families to have the best start in life. A new information campaign will be launched shortly, and I encourage all hon. Members to support it during the launch period.
I would like to say a few words before I conclude about the importance of delivering good bereavement care for those families who have experienced baby loss, which was a topic raised by many hon. Members. Having not gone through the experience myself, I can scarcely comprehend how devastating it must be for parents to lose a baby. It is important that parents receive appropriate care and support as sensitively as possible when that occurs. The MBRRACE report that I referenced stated that 60% of parents currently receive a high standard of bereavement care, but that clearly leaves 40% who do not, which is not good enough.
Since 2010, we have invested £35 million in the NHS to improve birthing environments, including better bereavement suites and family rooms at some 40 hospitals, to support bereaved families. I have seen some of those rooms, including the superb suite opened last month in the Medway Maritime hospital, which I think was one of those that indicated that it did not have such a suite when my hon. Friend the Member for Eddisbury undertook her research. We have heard from my right hon. Friend Anna Soubry about the recent improvement in Nottingham.
We have been working with Sands, the Miscarriage Association, the Lullaby Trust and others to understand the challenges that maternity services face and to highlight areas of good practice. I am pleased that the all-party group’s report, which was published this week, recognises the work that we are supporting to develop an overarching bereavement care pathway to help to reduce the variation in the quality of bereavement care provided across the NHS.
In response to the comments made by my hon. Friend Tim Loughton in his intervention and elsewhere during the debate, I should like to say that I have been impressed by comments made about the distress caused by the registration of post-24 week baby loss, often in the same place where mothers with young babies are registering births. I can well imagine that that compounds the sense of grief. It is appropriate that we look at best practice and the common-sense delivery of registration to see whether it could be spread more widely, so I will ask officials to look at that, but I am not promising legislation.
I again thank again all hon. Members for participating in the debate and their deeply moving contributions. In particular, I thank those who secured the debate for their work in driving the all-party group and raising awareness across the nation. It is important that we as a Government try to drive an improvement in outcomes, and I reassure hon. Members that the Government are fully committed to reducing the number of babies who die during pregnancy or in the neonatal period, and to supporting those families who are bereaved. Although the Baby Loss Awareness Week events here in Westminster culminate with today’s important debate, other events are continuing to take place throughout the United Kingdom and internationally. I should like to encourage everyone to join in the global wave of light, which we heard about earlier this afternoon, by lighting a candle at 7 o’clock this Saturday
I want to pay a huge tribute to my colleagues, particularly Vicky Foxcroft. I know that it is incredibly hard when we sit in this place to decide whether we want to put something that is a deeply personal piece of our lives into the public domain. Any parent who is dealing with child loss deals with the same dilemma. Do they talk to their employers? Do they talk to their friends? Do they explain what has happened?
I therefore thank the hon. Lady and all other colleagues: Patricia Gibson, my hon. Friend Victoria Prentis, the hon. Members for Washington and Sunderland West (Mrs Hodgson) and for Glasgow North (Patrick Grady), and my hon. Friends the Members for Gower (Byron Davies) and for Colchester (Will Quince). We were not aware a year ago where this path would take us. I am grateful for the fact that we are breaking the silence about child loss. We need professionals in the NHS to break the silence about child loss, too. That way, we will get real change.
I certainly will join the wave of light on Saturday. There is a series of awards called the Butterfly awards whereby people can nominate good practice in their local hospitals, or a local blogger or small charity that has made a difference in this field. I urge hon. Members to think about nominating people they know for next year. I will be there, listening to the awards. I will certainly be lighting a wave of light candle, and I know that many others will, too.
Before I put the Question, I should like to commend everyone who has taken part in this extraordinary debate, many of whom have shown incredible courage in talking about sensitive personal issues. Those who criticise this Chamber and the way it works should pay a bit of attention to how powerful it is when it operates as a unique forum for national debate, and how effective it is when it operates at its best, as it has done this afternoon.
Question put and agreed to.
That this House
has considered baby loss.