Item 7 on our agenda this afternoon is the Member debate under Standing Order 11.21(iv) on baby loss, and I call on Lynne Neagle to move the motion—Lynne.

Motion NDM6801 Lynne Neagle, David Rees, Adam Price

Supported by Angela Burns, Dai Lloyd, Helen Mary Jones, Jayne Bryant

To propose that the National Assembly for Wales:

1. Recognises that, in 2016, 263 infants died or were stillborn in Wales and that families who are affected by baby loss often cannot access appropriate services or support.

2. Welcomes Baby Loss Awareness week, which is organised by a collation of more than 60 charities throughout the UK and will take place from 9 to 15 October 2018 providing an opportunity to raise awareness about the importance of excellent bereavement care for all parents after pregnancy loss or the death of a baby.

3. Recognises that Baby Loss Awareness Week also provides an important opportunity for bereaved parents, and their families and friends, to unite and commemorate their babies’ lives.

4. Recognises that all bereaved parents should receive the same high standard of care when a baby dies, and that while good care cannot remove parents’ pain and grief, it can help parents through this devastating time.

5. Calls on the Welsh Government to take action to improve the care that parents receive after pregnancy or baby loss by:

a) committing to improve and deliver better bereavement care which can be accessed by all parents after pregnancy or baby loss;

b) adopting the core set of standards for bereavement care which have been used to underpin the National Bereavement Care Pathway in other areas of the UK;

c) working with NHS Wales to ensure all staff who come into contact with bereaved parents receive bereavement care training.

Motion moved.

Thank you, Deputy Presiding Officer. I'm grateful for the opportunity to open this individual Member debate on pregnancy and baby loss. Sadly, pregnancy loss and the death of a baby are not rare events. One in four pregnancies end in miscarriage, and, across the UK, 15 babies die every day either before, during or shortly after birth, meaning thousands of parents go through the tragedy of their baby dying.

Most childhood deaths in the UK occur within the first year of life. Neonatal deaths—the death of a baby within the first four weeks of life—account for between 70 per cent and 80 per cent of all infant deaths across the UK. And, in Wales, in 2016, the families of 263 infants went through the devastation of their baby dying or being born stillborn. This means that the vast majority of parents who will need support for the death of a child are parents of very young babies aged 28 days or younger. The quality of care that bereaved families receive after pregnancy loss or the death of a baby is key to their recovery. Good care cannot remove the pain and grief of parents, but it can help them through the tragedy. In contrast, poor care can significantly add to their distress. That is why today's motion is calling on the Welsh Government to take action to improve the care that parents receive after pregnancy or baby loss, to ensure families can access appropriate services or support.

The difficulties families face in accessing bereavement services following a miscarriage or stillbirth is not a new issue for us in Wales. Only last week, Welsh Government was presented with a report calling for better access to specialists and more compassionate care for women who suffer miscarriages. The report, making the case for better miscarriage care in Wales, outlines perspectives from women about the care they had received after having a miscarriage. Among its recommendations, it calls for greater levels of psychological and emotional support, and the creation of two dedicated recurrent pregnancy loss clinics in Wales.

The committee I chair, the Children, Young People and Education Committee, heard about the lack of psychological support for neonatal and bereaved parents in its recent inquiry into perinatal mental health. Public Health Wales told us that the effects the loss of a baby has on maternal mental health were well recognised, and highlighted the Royal College of Midwives's call for specialist bereavement midwives to support families. The Royal College of Obstetricians and Gynaecologists told us that its UK-wide survey of women who had experienced perinatal mental health problems found that some respondents who had experienced miscarriages and stillbirths did not feel there'd been enough support following these events or in subsequent pregnancies. And the Royal College of GPs told us that bereavement by miscarriage, stillbirth or neonatal death is more likely to lead to mental health problems in both parents.

And yet, we heard that on occasions where women were offered support, often, their partners were denied it, with many women reporting feeling that there was an assumption that these events did not affect men in the same way they do women. We also heard that some women reported not being offered any bereavement support, despite asking for it, or receiving it too long after the event. This is clearly not acceptable.

The Children, Young People and Education Committee's report into perinatal mental health was published in October last year. Among our recommendations was a call for Welsh Government to outline how it expects the lack of psychological support for neonatal and bereaved parents to be addressed, and standards to be met, and what steps it will take if compliance with the standards is not achieved. The third edition of the all-Wales neonatal standards was published in May—longer than we had hoped it would take in committee. There is a reference in the standards, which all health boards should be working to achieve, to psychological support for parents. The standards state that timely access to psychological support is vital to prevent any impact on a parent's mental health, and that each neonatal unit should ensure there are enough psychologists, counsellors and other mental health workers available, so that parents, siblings and staff have access to support.

In a briefing from Bliss, the charity for babies born premature or sick, they state that, despite these clear requirements in the standards, they have found that parents in more than half of neonatal units have had no access to psychological support and none of the three neonatal intensive care units has a dedicated mental health worker. This is clearly not good enough, and an issue I will be taking up with the Welsh Government now that the new standards have been published, as part of the follow-up work that the committee is doing on our inquiry into perinatal mental health. That is why I'm glad to have this opportunity to raise the issue again today. I'm grateful too to my co-submitters—David Rees and new father and new leader of Plaid Cymru, Adam Price—in supporting this motion, and also all the Members who have indicated their support for it.

Next week is Baby Loss Awareness Week across the UK. It will run from 9 to 15 October. It is organised by an alliance of more than 60 charities, working to raise awareness of the importance of excellent bereavement care for all parents after pregnancy loss or the death of a baby. Throughout the week, bereaved parents, their families and friends unite with each other and others to commemorate the lives of babies who died during pregnancy, at or soon after birth, and in infancy. A light-a-candle event is being sponsored by my colleague Mark Drakeford in the main hall of the Pierhead on Wednesday 10 October, from 12:15 to 12:45, as part of Baby Loss Awareness Week, and I hope that lots of Members will join that event.

The organisations behind Baby Loss Awareness Week and behind the motion I'm moving today are calling on healthcare professionals, policy makers and parliamentarians to make sure that parents who experience pregnancy or baby loss get the best possible support, wherever they live, when they need it. The quality of care for bereaved parents should not be a lottery. The parents of Wales deserve better. That is why this motion calls on the Welsh Government and NHS Wales to take definitive action to improve the care that parents receive after baby loss.

I understand that England and Scotland have made significant progress in the past 18 months to develop and deliver a national bereavement care pathway designed to improve the quality of care experienced by parents and families at all stages of pregnancy and baby loss. The pathway includes resources, toolkits and training for professionals. It must not be beyond us in Wales to ensure that our parents also receive good-quality care after pregnancy or baby loss. That is why this motion today calls on Welsh Government and NHS Wales to adopt a core set of minimum standards of bereavement care for those parents who have experienced baby loss.

While much more needs to be done to support families whose babies have died, there are some fantastic initiatives in Wales. One such scheme is the neonatal bereavement support provided by the neonatal outreach team at Hywel Dda Local Health Board. Surely, it is incumbent on us to insist on quality support for all parents after pregnancy or baby loss. It's time to stop talking and do something, and I hope that all Members will support this motion today.  

Well, there are some powerful presentations this afternoon—in the previous debate and this one. I'm grateful to Lynne Neagle for opening this important debate because it is with pride and honour that I speak in this debate, in support of the motion and in celebration of all of the work done in this difficult field. But, so much more needs to be done to provide extra resources for all the nurses, doctors, midwives, bereavement counsellors, neonatal units and all the charities. Services are so stretched and, really, I have to say, I am in awe of all of you providing services out there.

On 9 November 1985, our first-born baby son, Huw, died, 40 minutes after he was born, in my wife's arms. We had one rushed Polaroid picture of him. A postmortem followed, and then, a few days afterwards, the funeral. It's all a bit of a blur now, really, because after the funeral, I had to go straight back to do a surgery in Fforestfach. Huw lies buried in an unmarked grave in Morriston cemetery today, like so many other little babies. 

At the time, nobody could talk to us about this tragedy. Our families clammed up. My staff in the surgery were specifically instructed by my GP partners not to talk about Huw. But, what a fantastic bereavement counsellor we had. It does make you think, 'Why us? Why Huw?', and you can subside into self-pity, or you can say to yourself, 'This tragedy is not going to define my whole life.' Huw's short life certainly made me think about life, its meaning, what you can accomplish in 40 minutes, what you can contribute to humanity in warmth, compassion and kindness that other people, like Huw, never have the chance to make any contribution—only to kick-start me to also contribute on his behalf.

He is not forgotten. Our actions as his parents are in tribute to him; his life that could not contribute, but sparked others. I became a better doctor after this tragedy. My counselling now had the depth of lived experience rather than just being lifted from the educated text. Because people do not know what to say in tragedy when they were facing me and my wife. I say now to people—they don't know what to say, and I say, 'Just say, "I am so sorry." Don't walk away. Don't turn your back. "I am so sorry." There are no words', I counsel, 'And "I will listen when you want to talk."' Never turn your back on somebody who has faced tragedy.

Huw challenged, in his 40 minutes, me to do his bit, and not stay a victim but live as a tribute to him. Three wonderful children followed and on 9 November last year, our first grandson, Dyfan, was born.

In conclusion, as Plaid AMs we often say that we stand on the shoulders of the giants of Welsh history here in the Senedd, keeping the flame of Wales alive. We also stand on the shoulders of those who would dearly have loved to make a contribution but could not. Diolch yn fawr.

I'm pleased to have the opportunity to speak on this motion ahead of Baby Loss Awareness Week. No-one can underestimate the impact of pregnancy loss or the death of a baby. Feeling able or allowed to grieve can be incredibly difficult, particularly in the months and years after. One mother told me that special remembrance services bring such comfort because it's when families can allow their emotions to come out and commemorate the baby's life. Services will be taking place across Wales next week helping to bring together families who have experienced similar losses.

As today's motion sets out, it's crucial that families who are affected by pregnancy or baby loss can access appropriate services and support, and we've already heard that there's a disparity in access to services across Wales. In Newport we have some excellent support groups, and one of those is the Beresford pregnancy counselling centre. Staff at the centre provide free help, information and support to families across south Wales. As well as extreme distress, losing a baby or pregnancy can cause feelings of anger, resentment, anxiety, panic and sleeplessness. These feelings are all a normal part of grieving, and sessions allow parents to let off steam. The centre is a safe space for mothers and fathers that they so desperately need.

Immediate access to care and support will never ease parents' grief, but it can help them cope at a devastating time. I recently spoke to a mother who told me how she's incredibly grateful to staff at the Royal Gwent Hospital for how they looked after both her and her husband when they lost their baby. The sensitivity and genuine compassion shown to both parents will stay with them forever. Another mother told me that she didn't know how she'd have carried on if she hadn't already had a child.

The depth of feeling does not diminish over time. Not long ago I spoke with a couple who've just marked the fiftieth anniversary of their baby who was stillborn. While their baby will never be forgotten, they were only recently able to have a memorial made. The parents, who went on to have other children, have never forgotten their daughter who died. At the time, they were told to just get on with it and get over it, but they now feel more able to speak of their grief all these years later. I pay tribute to my colleague Dai Lloyd for his personal contribution today, which was so powerful.

It wasn't long ago that people didn't speak about pregnancy or baby loss. There are families and parents across Wales who have been silently grieving for decades. Raising awareness now should hopefully bring some comfort to families, although nothing will ever be able to take away that pain. It's important for mothers and fathers to have time to grieve and not feel they just have to carry on. Access to an excellent level of bereavement care for all parents after pregnancy loss or the death of a baby is crucial. 

The stillbirth and neonatal death charity, Sands, is there to help parents grieve and to support them through their darkest times. The Newport Sands group is run by bereaved parents who aim to help others going through similar tragedies that they have experienced themselves. Support packs and memory boxes are handed out at the monthly meetings, which, like those at the Beresford centre, are a safe space for bereaved parents. The bereavement suite at the Royal Gwent Hospital was funded by Sands, and this facility has been able to support many families. Sands are an incredibly dedicated group of volunteers who provide an invaluable service.

Whilst there's more support available to bereaved families now than previously, there's certainly more to do. In England and Scotland, health professionals and a group of baby loss charities have developed a new approach to improving bereavement services using a set of minimum standards. I hope that these can be adopted here in Wales. Improving the consistency and continuity of care for parents is crucial and I agree with the motion to adopt the national bereavement care pathway. This underlines the need for all NHS staff who come into contact with bereaved parents to receive bereavement care training and I hope this is something that NHS Wales will look to facilitate.

I urge Welsh Government to accept the proposals put forward in the motion today. They'll make a big difference to parents who have already been bereaved and also those who, sadly, will experience pregnancy and baby loss in the future. I hope to see many Members standing by bereaved parents, lighting a candle with Sands in the Pierhead next week. It's vital that those who need support always have access to the best possible care that can be offered.

I would like to thank Lynne, Adam and David for bringing forward this very important debate. Next week is Baby Loss Awareness Week and what better way to mark it than to debate the support Wales gives to those families affected by baby loss?

It is a sad fact that pregnancy loss and the death of a baby are not rare. A quarter of pregnancies end in miscarriage and every day in the UK 15 babies die before, during or shortly after birth. This is devastating for the parents and, sadly, they often don't get the help and support they need, but we give thanks to all of those who give their time and help, and succeed in making things better. We can do so much more for the hundreds of Welsh families that suffer from baby loss. Unfortunately, Wales has no specialist miscarriage clinic and Welsh patients find it difficult to get a referral to the Tommy's clinic in Coventry.

Campaigners recently presented the Welsh Government with a 24-page report, detailing actions that could be taken to improve services for families suffering from recurrent miscarriage. The 'Making the Case for Better Miscarriage Care in Wales' report makes 11 recommendations, which include the creation of dedicated recurrent pregnancy loss clinics in Wales.

We are providing care for those suffering from pregnancy loss, but it has to improve, and sometimes pregnant mothers are given a leaflet and sent home following a miscarriage and there is no bereavement support for the mother or the father and no follow-up. Some families suffer this multiple times and if they are lucky, they may get a referral to a gynaecologist. One couple were told, after their fifth miscarriage, that some people are just incompatible and they should consider adoption. So there needs to be more understanding of how to treat bereaved families. Even though we are succeeding in many areas and many people get the support that they need, there are those slipping through the net.

Sadly, less than half the local health boards provide mandatory bereavement care training for staff and those that do offer training provide less than one hour of training each year. I am pleased that the Welsh Government accept that compassionate bereavement care and support is a key part of maternity services provision. However, this is not happening on the ground. There are very long waits for bereavement counselling in Wales and, as a rule, these services are not offered to families suffering from miscarriage.

I do hope the Cabinet Secretary, in responding to this debate, will indicate support for the 'Making the Case for Better Miscarriage Care in Wales' report’s recommendations. We have to do better for families in Wales suffering from baby loss. Although we are doing an awful lot, there's more that we can do. So, let’s mark Baby Loss Awareness Week by improving services for Welsh families by working together. I pay thanks to those who are already succeeding and helping people in Wales to move on and have the support that they need. So, I urge members to support this motion. Thank you very much.

Thank you. Can I now call the Cabinet Secretary for Health and Social Services? Vaughan Gething.

Thank you, Deputy Presiding Officer. I'd like to start by thanking Members who both tabled the debate on this again important and emotionally charged issue, but in particular to those who have contributed.

Stillbirth, pregnancy loss and the death of a baby are often events that we don't consider happening to us. They're things we hear about with other people. But they do happen to lots of people in our country and they will happen again in the future. I am committed to doing what we can and what we should do to reduce these distressing events.

When families suffer the loss of a baby, NHS Wales must ensure that bereavement services are available to provide support and the appropriate environment for families to spend time with their baby. The Welsh Government is already working with the maternity and neonatal networks in collaboration with health boards to ensure improved and standardised practice. 

In Wales, our response to stillbirth was strengthened following the National Assembly one-day inquiry into stillbirth held in 2013, and like a number of other Members I was on the committee during the course of that inquiry. The maternity network was set up as a recommendation from that. It focused on raising awareness of stillbirth, implementing measures to detect babies at risk and improving the health of mothers, which is a key risk factor. In addition, it included the implementation of a growth assessment programme right across Wales, with multiprofessional training and emergency drills and guidance for reduced foetal movements, and a perinatal mortality review process and learning to come from that. 

But stillbirths and pregnancy loss are often subjects that are not discussed. We've heard from Jayne Bryant about her recollection of that, but in particular Dai Lloyd's own experience. There are times you hear from Members in this Chamber things you did not know and would not have expected. It may have happened some decades ago, and for all the medical experience and life experience, I think it's still a remarkably brave thing to share in the Chamber about the real impact, and it brings home that that story is played out in other families each day within the country and it highlights why we need to improve what we can do. 

The safer pregnancy initiative led by the maternity network listened to families who wanted midwives and obstetricians to break the silence. With increasing complexity in pregnancy, including obesity, smoking and maternal health factors like diabetes, stillbirth has a risk of increasing prevalence not reducing. That's why the safer pregnancy initiative was so important, with the posters, the information wallets to carry hand-held notes, and to raise issues such as foetal movements, smoking, eating well, and seeing your midwife early to take advantage of the excellent midwife care that is available. A recent evaluation of that initiative has shown that women and healthcare workers welcomed the approach, and the network is already looking at ways to extend the message with a consistent approach. 

The Wales neonatal network was established in autumn 2010 and it aims to ensure the best possible outcomes for babies and mothers with more standardised care. It brings together NHS health professionals and partners from other organisations to oversee neonatal care against all-Wales neonatal standards. Those standards stipulate that each unit should ensure that timely access to psychological support is available to parents, and as we've heard in the opening, we still have some way to go before we get there on a consistent basis. Earlier this year, the neonatal and maternity networks commenced their plans to merge and become a joint network during next year, with revised governance and leadership arrangements. That merger will bring us opportunities to foster closer links across that broader pathway for mother and baby, and to provide new areas for joint working and improvement. 

The birth of a baby on the threshold of survival is uncertain in outcome, and Welsh Government has worked with our NHS and with families to develop guidance for professionals, to ensure that all babies receive individualised assessment. Where the birth of a baby on the threshold of survival is anticipated or occurs, maternity and neonatal teams should ensure that clinical assessments and individualised decisions are made about the ongoing management and support provided. And the use of that clinical judgment must take place in a sensitive partnership with families, who should be treated with respect and dignity.  

The death of a baby is a devastating experience for all those involved. Women and families deserve personal support and information following stillbirth and the death of a baby. There has been collaborative work already with third sector agencies such as the stillbirth and neonatal death charity, Sands, and 2 Wish Upon A Star, to help provide training, information for families and to develop improved environments, and to give opportunities to build future memories.

The positive point that we should take is that there is already excellence within our services here in Wales. Members may remember Laura Wyatt, who is a midwife in Cardiff and Vale. She is a recent UK midwife of the year in the Royal College of Midwives Awards, and that award came on the back of her nomination by bereaved parents, and it was the support that she gave to them and her support afterwards, as they had become parents, that was the point of the nomination—to recognise the difference that her work made. She is part of the bereavement sub-group of the maternity network, helping to develop those improved standards and helping to develop better environments for parents. 

Within maternity services now, all health boards have an identified bereavement lead to support families and enable them to spend time with their babies. So, I welcome the launch next week of the UK standards for bereavement care. The maternity network has linked with Sands throughout the development and pilot of the care pathway and standards. The maternity network has adopted these within the new all-Wales bereavement standards, so all maternity services have a bereavement pathway in place, and will review these following the UK pilot evaluation. 

Baby Loss Awareness Week gives us the opportunity to remember those babies who have died, and should help us to break the silence and start conversations about this important issue to make sure that Dai Lloyd's recollection of people deliberately avoiding having a conversation is not the way in which we will work and behave in the future. Providing safe and effective maternity and neonatal services for women and families will help to support every child and every family to have the best possible start. I'm committed to ensuring that families who suffer the loss of a baby have the best possible care and support from our health service here in Wales, and I'm also happy to commit to providing a future update to Members on the progress that we make following the passing of this motion.  

Thank you. Can I now call on Helen Mary Jones to reply to the debate? 

Thank you, Dirprwy Lywydd. I'll respond to this debate on behalf of my colleague Adam Price, who's one of the persons named in tabling it. I'd like to begin, of course, by thanking all Members for taking part in what has been, I think, a very moving debate. It is not always appropriate for politicians to bring our personal experiences to bear on our politics, but sometimes it very much is, and that was very much the case today. Before I respond to anything that other Members have said, I'd like to thank Dai Lloyd for his contribution. It was very moving, and I also think inspiring. I'm very grateful to you, Dai, for that.

Lynne set out a very powerful case for improvement in services, and set out the inconsistency that families too often have to bear. But Members across the Chamber who've participated have also highlighted that there is some very good practice, and the important thing, I think, is to learn from that. Jayne Bryant's comments about some of the excellent services provided by the third sector, some of the services that are led by the parents—they're very valuable and very important.

Lynne talked about the silence that often surrounds these issues, and other Members have mentioned that. It can be very difficult. Often a miscarriage, for example, is treated as if it isn't a real loss, as if it isn't really a bereavement. But of course, to those parents, that is a real child, of course it is. I think Members have also highlighted—Lynne particularly—the need to provide services for fathers as well as for mothers. Too often, still, no bereavement support is offered, but when it is, too often it is only offered to the mother as if the father has not suffered a loss, and it's very important that we ensure that the loss for both parents and indeed family members and, as others have mentioned, siblings too who can be affected by the loss of a baby—that that is all acknowledged.

I'm grateful to Caroline for making the points about the need for specialist services for women suffering from recurrent miscarriages. The idea that you can simply say to a couple, 'Well, there's some sort of incompatibility here, and you will never be parents and you just have to accept it' is something that I think, in Wales in the twenty-first century, none of us would want to tolerate. I also think the points about further and better training for staff are very well made.

I'm grateful to the Cabinet Secretary for his response and appreciate what he set out in terms of the work that is being done, but I think the evidence that has been presented today, the evidence from the charities that have formed part of the alliance for Baby Loss Awareness Week—and I would briefly wish to thank those organisations for coming together so effectively to help raise these very important and very difficult issues, and I'm certainly looking forward to participating in some of those commemorations with families that Jayne and Lynne and others have mentioned that will take place next week—. 

But I'm sure that the Cabinet Secretary would agree that there is no room for complacency here. I'm very glad to hear him tell us that, through the maternity networks, all services will now have an identified bereavement pathway. I wasn't quite clear from his remarks how long those pathways have been in place. If it's very new, then I think we can look forward, as he said, to hearing an update on how well those services are being delivered. But we do know that there can be a gap between national policy and delivery on the ground, and I'm sure that none of us in this Chamber will tolerate such a gap around such a sensitive issue.

No mother, no father losing a child in Wales should be left alone to deal with that. And we know that that still happens now. Many of us in this Chamber will have family experience. I think we tend to think sometimes of the loss of a baby as something rare. As Lynne and others have pointed out, in fact, that is not the case, and those early days are the most dangerous time for any child in Wales.

So, in conclusion, Deputy Presiding Officer, to repeat my thanks to everybody who's contributed, to thank all those who have spoken out, particularly parents and families who've shared with us the challenges that they faced, to say a huge thank you to all the wonderful people who do provide excellent services, but to say that I look forward to the update from the Cabinet Secretary about the actual delivery of proper psychological counselling services for families everywhere in Wales who experience this, if this is what they want. If one family is left alone in this experience in our health services in Wales, that is one family too many, and that we cannot tolerate. Diolch yn fawr. 

Thank you. The proposal is to agree the motion. Does any Member object? No. The motion is therefore agreed in accordance with Standing Order 12.36. 

Motion agreed in accordance with Standing Order 12.36.