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Chamber and committees

Meeting date: Tuesday, December 10, 2019

Meeting of the Parliament 10 December 2019

Agenda: Time for Reflection, Topical Question Time, Queen Elizabeth University Hospital Oversight Board, Education (Performance), Human Rights Defenders, Code of Conduct for Members of the Scottish Parliament, Decision Time, Miscarriage


Contents


Miscarriage

The final item of business is a members’ business debate on motion S5M-17959, in the name of James Dornan, on easing the burden and pain of miscarriage. The debate will be concluded without any question being put.

Motion debated,

That the Parliament acknowledges that experiencing a miscarriage is an extremely traumatic and serious event; understands that many women in Scotland, including in the Glasgow Cathcart constituency, feel that this is often not recognised by health professionals, family members and friends; believes that people’s perceptions of a miscarriage need to change so that women do not need to feel that they must “carry on as normal” and that many couples need time to grieve, and notes the view that the Parliament can help lead change by looking at ways to ease the burden of people who experience a miscarriage at any stage in pregnancy in a way that gives couples time to grieve together and helps to remove the taboo of talking about miscarriage.

17:04  

I thank the 21 MSPs who supported my motion, which allowed me to secure today’s very important debate.

In May this year, I attended a meeting of the Miscarriage Association at the Victoria hospital in my constituency, and I am privileged to welcome a number of its members to the chamber today. Their devastating loss moved me to bring the subject to the Parliament, and I am grateful for the opportunity to do so this evening.

Nothing as a parent makes us prouder than seeing our child grow, develop as a person and form their own family. I am the dad to two sons and the granddad to two grandchildren, and the meeting reminded me of the pain that is experienced in losing a baby—even 45 years later—and yet, as a dad, I cannot even contemplate the pain that their mother must have gone through.

I am sure that in this debate we will hear brave personal and painful accounts of baby loss, and although it will be difficult, it will help us to start much-needed conversations.

A miscarriage is the most common type of pregnancy loss, affecting around one pregnancy in four. Most miscarriages happen in the first three months of pregnancy, but they can happen up to the 24th week. From the 24th week onwards, pregnancy loss is known as stillbirth.

I mentioned that we are joined by local members of the Miscarriage Association. Like others, they offer a wide range of advice services through local support groups, helplines, online support and leaflets. They are always there to assist couples through what is undoubtedly the most difficult time in a couple’s life. They also provide research, such as the Alife 2 trial, which examines the effects of blood thinning treatments in reducing the risk of miscarrying. The PROMISE trial highlights how progesterone in the first trimester of pregnancy does not improve the chances of a successful pregnancy term where there is a history of miscarriage. One further trial is the TABLET trial, which investigates the role that thyroid antibodies play in unexplained miscarriages. There are many more examples, and I strongly encourage members to contact their local Miscarriage Association group for more detail.

When I met the local support group, there were a total of 37 miscarriage bereavements represented at the meeting, affecting a combination of eight woman and two men. If we reflect on that for a moment, we realise that that means that there were more than three dozen bereavements between 10 people. The group recognised the lack of support for men and how they have limited opportunities to deal with their feelings, as they are expected to be the strong ones in situations such as these. It discussed the impact on mental health, and how its members had to discover the resources and information on mental health support services themselves. Consider the desperation that the group members feel at their losses—and recurrent losses—and how miscarriage affects a person, from their ability to carry out simple domestic tasks to their ability to maintain relationships with friends, family and, of course, partners.

Miscarriages can lead to feelings of despair and desperation to continue to try to have a successful pregnancy. Of course, there are cases where some women self-medicate. That can place a strain on relationships, whereby partners worry about the risks that women are taking with their health, and possibly their lives, while the women are just trying to get through their loss in whatever way they can and hopefully get that much-wanted pregnancy.

One woman later told me that she recognised that her ability to think rationally was impaired, but she was willing to take the risk if it meant falling pregnant. Another woman later shared stories of her traumatic visits to the early pregnancy unit after suffering a miscarriage. At each visit, the couple were in the waiting room, which is right beside where families come out after seeing their scans. As one can imagine, the couples coming out are elated, holding their scan pictures and discussing their baby and future plans. Just think for a moment how incredibly difficult it must be for couples going through the pain of bereavement to have to listen to excited parents-to-be while trying to conceal the pain and hurt that they are feeling.

So far, I have considered the pain, the trauma and the effects on couples’ mental health that a miscarriage can have. However, there are two further points I wish to raise. Stella Creasy, who was the MP for Walthamstow before the Westminster Parliament dissolved, spoke about how she felt that she had no option but to carry on working through two miscarriages. “The One Show” presenter Alex Jones spoke in an interview on how she was back on set an hour after a missed miscarriage—a missed miscarriage being where the baby dies, but the physical miscarriage does not start straight away. It is a sad indictment of our society that so many women feel pressured to carry on regardless.

How many members have had a conversation with a woman they know, or their partner, who has suffered a miscarriage and been told that that woman cannot make the meeting, go to work or attend the parents evening because they are miscarrying? I would guess that not many have. Disclosure is difficult—sometimes exceptionally difficult--in the workplace.

However, New Zealand offers hope. New Zealanders are already entitled to leave after the death of family members or children, but there are now proposals to introduce three days of paid bereavement leave for women and their partners after a miscarriage or a stillbirth. I welcome that move, as anything that we can do to try to remove the stigma and taboo around miscarriage should be explored.

I apologise for not being able to stay for the whole debate. Has James Dornan come across any issues concerning the burial of babies following miscarriage?

There are a number of issues around what happens after a miscarriage has occurred and I would expect the issue to which Elaine Smith referred to be one of the major ones for parents who have lost a child in that way.

Countless women suffer in silence, as they do not let their families or friends know about a pregnancy until 12 weeks have passed—the implication is that if they miscarry, it is something that is often best kept to themselves.

The pain and trauma of a miscarriage run deep, and the trauma is not short term. On top of the excellent services that the Miscarriage Association and others provide, there is more action that Government, the national health service and society can take. Our mental health services can support parents and remove the feeling that they need to carry on after a miscarriage, regardless of the pain that they feel. Even providing couples with easily accessible information and support would be a huge step forward.

The NHS should consider looking at how it can reconfigure its services so that expectant parents are not in the same clinic at the same time as those who are undergoing the pain of having lost a child. The NHS could expand research into new drugs and procedures so that women do not turn to self-medication and risk their health and future fertility by taking foreign drugs. Finally, we need to open up as a society. It is, and must be seen as, acceptable for couples suffering a miscarriage bereavement to talk about it and share their pain. I call on the new Westminster Government, whoever it might be, to change employment law to meet the New Zealand proposals, where bereavement leave is granted at the loss of a child or children through miscarriage or stillbirth. People might have just got on with it in the past, but surely we should not just be reliving the past but creating a better future. That is the way to help the so many unfortunate people who have lost a child due to miscarriage.

17:11  

I congratulate my colleague James Dornan on bringing this debate to the chamber and I send my warmest sympathy to those who have experienced miscarriage and have come to listen to the debate.

Miscarriage is something that stays with both a mother and a father for the rest of their lives, and when it happens, parents need to be able to grieve together for their child. I am sure that many members in the chamber have gone through that appalling experience. Grieving is not an easy process, but it is a necessary one and acceptance is key. It is difficult to accept that miscarriage has happened if there is no explanation as to why the mother was unable to carry her baby to full term. Questions such as whether the miscarriage could have been prevented and whether it will happen again and a million others race through parents’ minds.

Members might or might not have seen a petition that was started in October by a couple from North Ayrshire who had just suffered their 12th pregnancy loss in three years. They say that, although NHS Ayrshire and Arran staff have always been helpful and understanding, they have been unable to investigate why the pregnancy loss keeps happening or to help them with how to deal with it afterwards and that that would have to be done via a private clinic, the cost of which can be prohibitive—it certainly would be for that couple.

Although nothing can turn back time, more research into the causes of miscarriage can help parents with their grief and managing expectations. Further, the more we know, the more we can perhaps do to prevent miscarriages from happening. Only two weeks ago, an extensive annual report was published on births that zooms in on factors such as maternal age, smoking habits, method of delivery, birth weight and so on. Having large data samples is crucial for looking at trends and establishing correlations. However, when it comes to recording miscarriages, it is almost impossible to paint a picture that accurately reflects what is going on. The Information Services Division collects data on NHS Scotland services, but it made the decision in 2017 to stop publishing data on miscarriage, stating:

“The data is incomplete and therefore of low clinical value. Accurate assessment of the number of miscarriages that occur is not possible from hospital based data as only miscarriages that require hospital inpatient or daycase treatment are recorded. It is possible that some, particularly early, miscarriages are either managed solely by General Practitioners or may not be recognised by the women, who as such are never referred to hospital. Requests for specific information on this topic will continue to be provided through ISD’s information request service.”

So, there we have it. In essence, data would not include an unknown but potentially very large group of women who were treated in outpatient settings or by their GP, or who did not seek any medical intervention, including those who do not know that they suffered a miscarriage. If, for example, ISD updated that table and saw a decline in recent years, it could not say that that was a true decline in the number of miscarriages. Given that we know that underreporting is a huge issue for miscarriage, it is almost impossible to interpret the numbers with any great degree of reliability and it is therefore not possible to make assumptions about trends. Having such metadata could have been hugely helpful if it accurately reflected trends, but miscarriage is such a personal issue that it is important to learn as much as possible from each woman’s miscarriage.

When individual circumstances are the only source of information to rely on, it is all the more important that access is provided to such information.

Perhaps this issue can be tied in to criteria that are similar to that which Scotland has for the provision of in vitro fertilisation treatment on the NHS, which is the most progressive in the United Kingdom. That may require additional funding for maternity services across Scotland. I hope that, working with NHS Scotland and charities such as the Stillbirth and Neonatal Death Society—SANDS—and Cruse Bereavement Care, steps can be taken to help families to better understand what has happened and their chances.

As a society, we need to do more to ensure that people who have miscarriages are understood by their employers, friends, neighbours and wider family. Miscarriage may be difficult to understand, so what James Dornan is trying to bring forward is essential and will be warmly welcomed by many people across Scotland. I thank him for the debate; I hope that a lot of people are listening. I think that a lot of people will appreciate his work in this area.

17:16  

Miscarriage is an intensely personal experience. There is no right or wrong about how to feel or behave. It is an experience that many women and their partners will go through, and the ability to talk openly about their loss and the feelings that they are experiencing can make a huge difference. Often, that need comes after the loss, when the shock and sorrow start to pass and grief, anger and fear set in. Or it may come later, at the date when the baby would have been due.

The advice that is often given—not to tell anybody about being pregnant until the first 12 weeks are past—may seem sensible, because more than 80 per cent of miscarriages occur during those early weeks. However, that wondrous first trimester, when you feel physically terrible but are filled with bubbling excitement, changes your life. Suddenly you are dreaming and planning what the new little person will be like and cannot resist buying that little pair of booties or cute bib.

When your joy and hope slips away one day, does the wisdom of not telling anyone lessen the disappointment and empty feelings? Does it stop the awkward looks and pitying glances? It may do so for some, but most of all, it means that you have no one with whom to share the grief, worry and fears.

I was just five weeks pregnant the first time that I miscarried. We had not told anyone, so I carried on as normal with the daily routine of work and family, pushing my sadness aside. These things happen, I told myself. As a nurse, I knew that around one in eight pregnancies end in miscarriage, so I told myself that it was normal.

When I fell pregnant again, I did not worry, but when I sensed that something was wrong, I was past the all-important 12 weeks and we had started to tell people. I was immediately referred for an emergency scan but, despite thinking that I was prepared for what was coming, the silence that pervaded the air, the absence of a heartbeat, still came as a shock. I felt my emotions drain away. I became numb and robotic.

The admission to hospital for surgery was immediate. I just wanted to be immersed in the cold professionalism of a routine surgery. I did not want the medical staff to explain the surgery or talk about it to me, because I did not want to feel the pain that I knew was just beneath the surface. The staff were supportive and, much as I did when I was the carer, they avoided unhelpful platitudes such as, “You are still young and you can try again”. I think that I was given a leaflet, but I just wanted to go home.

Two days later, pale and shaky at the school gates, a kind word of concern from another mother, who had seen me in the hospital when visiting her mother, opened the floodgates to shared stories of loss. It seemed that we had all kept our experiences and grief to ourselves and suddenly we were sharing. It was cathartic and we laughed and cried together. When I returned to work a few days later, it was easier to tell people that I had miscarried and to receive their well-meant concern.

I became one in 100 women when I had a third miscarriage, but, despite that, I also became one of the 85 per cent of women who go on to have a healthy baby following miscarriage. I hope that the work for parents who experience miscarriage by organisations such as Tommy’s charity, the Miscarriage Association and of course our NHS has improved access to information, support and understanding, whether through counselling or online information. Importantly, there has been a recognition that the provision of a certificate for a pregnancy that ends before 24 weeks without a living child can be a comfort to parents who want documentation to acknowledge the loss of their child. It is now recommended that all NHS trusts offer that option for parents.

I hope that miscarriage will become, like many other areas of life and death, less of a taboo subject so that we all feel able to support those who struggle with what can be a very distressing experience.

Usually, I would probably have talked about the facts, the research and the medicine, but today, given the subject of the debate, I felt that I had to share some of my personal experience in the hope that other people will do the same.

17:20  

I thank James Dornan for bringing this very important topic to the chamber for debate and discussion. I thank members who have shared their own experiences, especially Michelle Ballantyne. I know that that cannot be easy to do.

The motion rightly mentions taboo, and the fact that discussions about miscarriage are still very difficult to have, partly because of the pain and trauma that individuals experience. It is a topic that we have not to talk about. Women are told to keep things quiet and to themselves. I hope that, as a result of having this discussion, we as a Parliament can start to help to change that. It is great that James Dornan has taken a very close interest in the subject as part of his constituency work, and I hope that his guests from the local Miscarriage Association feel that this is a valuable debate.

As the motion rightly says, the pain and trauma of miscarriage and baby loss can be truly devastating for women and their partners, couples and families. It is still really difficult to talk about miscarriage—I have not experienced it personally, so I feel slightly hesitant about talking about it. If we do not have direct experience of something, we do not want to say the wrong thing. I am therefore very grateful to people who have been very brave in revealing their own experiences.

Before the debate, I read about a friend of mine, Sarah Owen, who is the GMB’s political officer. I declare that I am a member of that trade union. Sarah has written and spoken about her experience of not just one, but two miscarriages. The first happened while she was at work. She makes the point that most women will miscarry in public and that she is very fortunate to work for a trade union and in a supportive environment. She is concerned about women who do not have that support and are in insecure work or women who work in a sexist organisation and do not know what their rights at work are. Sarah lost twins in her second miscarriage. Before Elaine Smith had to leave the chamber, she made a point about burial or cremation. Sarah talks very movingly about her experience of cremation. I know that James Dornan has previously asked the minister questions about the national bereavement care pathway. It would be good to get an update on that.

To stick with politics, it was very moving when Councillor Rhiannon Spear of Glasgow City Council opened up about her experience of miscarriage. As we often do in 2019, we talk about such things through social media. It was very moving that Nicola Sturgeon reached out to Rhiannon on Twitter and basically said to her, “I know how you’re feeling right now.” The First Minister has, of course, been open about her experience. Such conversations help others, who are perhaps unsure, to find the right words and the right way to express themselves.

It is very important to think about the impacts on dads, too—other members have touched on that—but I am also mindful of women who do not have a partner and have to experience miscarriage alone. That must be incredibly difficult.

I know that I am running out of time, so I will pick up on the point in James Dornan’s motion about difficulties not always being fully recognised by health professionals. The minister has yet to respond but, if we can take anything away from the debate, it is that we must ensure that everyone who works across the NHS is equipped to support women and families in such difficult times and that we can work together to tackle the taboo and to remove some of the stigma. We must be compassionate and human and not ask people very personal questions about their intention to have children and start a family and why they are not drinking and so on. Do not be nosy, but if someone is having a hard time, reach out and be supportive.

17:24  

As others have done, I thank James Dornan for bringing what is a very important issue to the chamber. As Monica Lennon did, I thank Michelle Ballantyne for her powerful personal contribution.

I have not prepared anything as such, so forgive me if my presentation is slightly rougher than usual, Presiding Officer. There are two reasons why I put my name down to speak in the debate. A bit like Michelle Ballantyne, I want to reflect my experiences of miscarriage, from a dad’s point of view. I also want to speak about a fantastic local organisation, Baby Loss Retreat, which I have supported since becoming its constituency MSP.

As others have said, there is a real taboo around miscarriage. I can clearly remember when it happened to my partner and me, because it happened during our election campaign—or my election campaign, I should say, although the experience made it feel like it was our election campaign. It was one of those things that happened that we did not tell anybody about. We just had to get on with it because there was an election campaign going on.

Unlike other people who were in that position, I had what I suppose could be called the honour of being able to say something when I was successfully elected. As part of my acceptance speech, as well as thanking everybody who had helped me in the campaign, I made a reference to what had happened, but it was very obscure. Thinking about what others have said in the debate about that, I wonder why that was the case. Why was that reference so obscure? Why was I not more open? Family and friends who were there said to me after, “What did you mean by that? What were you referring to ‘wee stars’ for? What did you mean?” That is when I was able to talk about it. I said that I did not want to talk about it during the campaign—stuff like that. Conversations I have had since then, and this debate, have had me thinking about whether that was the right approach. The issue of it being a taboo subject is very real.

I put on record my thanks to my partner, Lynsay, who clearly took the brunt of that during the election campaign, when we decided not to talk about it. Thankfully, it was a successful election campaign—and we went on to have a second child. There are definite lessons there. I thank Elaine Smith—it is a pity that she has left the chamber but I am sure that Monica Lennon will pass on my remarks—because she was my rival candidate in Coatbridge and Chryston, and she ran a good and fair campaign. That is what we should all think about. There may be lessons there for everybody in politics, the press and other places—we do not know what people are experiencing when they are standing for office. It is a worthwhile lesson for us all.

I said that I wanted to talk about the charity Baby Loss Retreat, which was founded a few years ago by Bryan and Julie Morrison from Coatbridge. They sought my support not long after I was elected and I have been happy to support them since. They are a couple who now go around the country, mainly in the Lanarkshire and central Scotland area, talking about their experiences of baby loss and how it has helped to motivate them to help others.

The specific purpose of Bryan and Julie’s charity is to offer a break to couples who have experienced a child bereavement or miscarriage, as they feel that there is a gap in service in that regard. However, it is in their nature also to offer a counselling service and to campaign on issues such as the registration of deaths that occur before 24 weeks of pregnancy. I have written to the minister on that issue on behalf of Baby Loss Retreat, and I know that work is going on in that area. Bryan and Julie are clear that it is about making choices available and not about making registration mandatory, because some parents will not want that and some will. They also work and campaign on the issues to do with burial and so on that Elaine Smith and Monica Lennon mentioned.

Bryan and Julie do a fantastic job. At the Glasgow Times community champions event, which I think took place last Friday, they received a health and wellbeing award for their work, which shows the amount of recognition that the charity is getting. I note that some of James Dornan’s constituents are in the gallery. Perhaps it would be helpful if James Dornan and I worked together, so that we can link up his constituents with Baby Loss Retreat and good practice can be shared.

I again thank James Dornan for giving us—for giving me—the opportunity to talk about the issue. I did not think that I would ever be in a position to speak about it this openly, but I am glad that I have had the chance to do so.

I ask that the minister, in addition to the other things that he has been asked to comment on, think about the Scottish Government bringing such a debate to the chamber. If the issue is about breaking down the taboo of miscarriage, the discussion should not have been left to a members’ business debate, in which the numbers of speakers are limited. Let us have a Scottish Government-led debate on the matter. I think that that would be a fairly consensual debate. Let us start breaking down the taboo around miscarriage.

17:30  

I thank James Dornan for lodging the motion and the members who signed it, which helped to ensure that it secured time in the chamber for debate tonight. I also thank members from across the chamber for their contributions, particularly Fulton MacGregor and Michelle Ballantyne, who shared for the first time—certainly for the first time in the chamber—their personal experiences. Doing that is so powerful, particularly in a debate on a topic such as miscarriage, and I thank them for that. It is important that we work to reduce the stigma and taboo around the subject, and both members, along with others members who have spoken on the issue in the past, have helped to do that.

The loss of a baby, no matter at what stage of pregnancy, is a significant and traumatic event that affects many women and their families throughout Scotland. For various reasons, some of those women and families choose to remain silent about what has happened to them. They deserve to be treated with compassion and understanding and to be given time and space to grieve for their loss.

Miscarriage affects about one in five women before the 12th week of pregnancy. There is often no obvious cause. Recurrent miscarriage is less common, affecting—as Michelle Ballantyne said—about one in every hundred women. The chances of finding a treatable cause for recurrent miscarriage are better, but in many cases the cause may still not be identified.

It is vital that women and their families who have experienced a miscarriage are provided with the right information, care and support, taking into account their individual circumstances. We expect healthcare professionals to follow the guidelines that are set out by the Royal College of Obstetricians and Gynaecologists and the National Institute for Health and Care Excellence clinical guidelines to treat all women experiencing early pregnancy complications with dignity, sensitivity and respect, and to be aware that people react to complications or the loss of a pregnancy in different ways.

However, we are aware that, sometimes, care can be variable, particularly for women who do not present at an early pregnancy unit and for women who present out of hours. My officials have written to health boards to ask what their treatment and care pathway is for women who have suffered a miscarriage.

All bereaved parents should receive high-quality, sensitive bereavement care following a loss. That care may include further investigation or counselling as appropriate, which, in the first instance, should be provided by health professionals in their local area. They may also be referred to an appropriate voluntary organisation such as the Scottish Care & Information on Miscarriage, which offers counselling and advice to women and their partners following early pregnancy loss.

SANDS Lothians also offers care and support to women and families for all types of pregnancy and baby loss. I visited its offices during baby loss awareness week in October, to hear about its important work and to talk to members of the charity and bereaved parents.

I am really pleased to let members know about an event that will be running for patients in Edinburgh next May. Michael Rimmer, who is a PhD student at the Medical Research Council centre for reproductive health at the University of Edinburgh, as a well as junior registrar in obstetrics and gynaecology in NHS Lothian, is running a public engagement event on miscarriage. He wants to challenge the taboo around miscarriage by encouraging communication and displaying information from scientific literature, making it accessible to patients, and he has secured funding through an award from the Beltane Public Engagement Network.

Kenneth Gibson talked about grieving. It is important that we have consistently good, high-quality and sensitive bereavement care. The Scottish Government provided funding of £94,000 to SANDS UK to develop a national bereavement care pathway for baby loss in Scotland, which Monica Lennon mentioned. SANDS UK is leading the development of the pathway on behalf of baby loss charities, the royal colleges, other professional bodies and the Scottish Government. Five experiences of pregnancy and baby loss are included in the pathway: miscarriage, including ectopic and molar pregnancy; termination of pregnancy for foetal anomaly; stillbirth; neonatal death; and the sudden and unexpected death of an infant. The pathway will improve the quality of and reduce the inequity in the bereavement care that is provided to parents and families when a baby dies before, during or shortly after birth, building on the good practice that is already in place in health boards across Scotland.

All health boards were invited to consider whether they would like to become a pathway early adopter site, and we have now identified five health boards—NHS Ayrshire and Arran, NHS Fife, NHS Dumfries and Galloway, NHS Grampian and NHS Lothian—that will take that work forward early next year. I am pleased to let members know that I expect to launch the pathway next spring. I hope that Monica Lennon and others will look forward to that.

We have also set up a working group, chaired jointly by the Royal College of Midwives and the Royal College of Obstetricians and Gynaecologists, to examine the possibility of providing a non-statutory, voluntary certificate for loss occurring before the 24th week of pregnancy, which relates to an issue that was raised by Michelle Ballantyne and Fulton MacGregor.

We know that mental health during pregnancy and after birth is hugely important. That is why the Scottish Government has committed £50 million over the next four years to improving mental health services for women and their families during that period. Miscarriage, pregnancy complications and loss can be devastating for families. There can be many additional challenges around mental health following those traumatic experiences, and it is key that women who experience loss and trauma receive the right mental health support, if needed, and that that support is on-going and available during future pregnancies.

Again, I thank James Dornan for bringing this important motion to the attention of the chamber, and Michelle Ballantyne and Fulton MacGregor for their contributions.

This has been a good debate. Fulton MacGregor’s final point was correct, of course. The decision about what business comes to the chamber is for the Parliamentary Bureau, but I agree that it might be good to have a longer, more substantive debate on the issue. There might not be as many people in the chamber today as we might hope, but all the voices that we have heard today are recorded in the Official Report and will be heard on Parliament TV. That is important.

I hope that I have reassured the Parliament that the Scottish Government is firmly committed to helping to ease the pain and burden that is felt by women and their families who have, sadly, experienced a loss.

Meeting closed at 17:38.