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Children’s Grief Awareness Week

– in the Scottish Parliament on 25th November 2015.

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Photo of John Scott John Scott Conservative

The final item of business is a members’ business debate on motion S4M-14730, in the name of Gil Paterson, on children’s grief awareness week.

Motion debated,

That the Parliament notes that 19 to 25 November 2015 is Children’s Grief Awareness Week; understands that bereavement can be a complex and difficult period for children when they lose a relative or friend; recognises that Children’s Grief Awareness Week is being organised by the charity, Grief Encounter, to raise awareness of how the charity can make opportunities for families to grieve and to raise funding to continue its work in this field; understands that the charity will run fundraising and awareness exercises all week, commencing with a commemorative candle ceremony; understands that the Scottish Cot Death Trust provides a wide range of support for bereaved families and educates the public and professionals about cot death and how to reduce the risks; further understands that, as part of its campaign to provide information and awareness, the Scottish Cot Death Trust has created, printed and published two books titled, Andrew’s Rainbow and Rory’s Star, which are targeted at children, parents, relatives and teachers to help provide a starting point for difficult conversations in a gentle and child-centred way, and notes the view that the work by all charities involved in this area should be publically acknowledged and commended and the advice and support that they provide should be more readily available to everyone who works, engages with or has children that have been affected by bereavement.

Photo of Gil Paterson Gil Paterson Scottish National Party

I thank members for supporting my motion and allowing the debate to take place this evening—it is an important evening for it to take place. I welcome people from the Scottish Cot Death Trust, Richmond’s Hope, Sands UK, the Muslim Bereavement Support Service, Child Bereavement UK, Seasons for Growth, Petal Support, Sands Lothians, affected parents and Wilma Carragher, who are all in the gallery. If I have missed anyone, I apologise; there may well be people here whom I do not know.

I will use most but not all of my speech to talk about recent pieces of good work done by the Scottish Cot Death Trust. One in 29 children in the United Kingdom today has been bereaved of a parent, a brother or a sister. Today marks the last day of the week-long children’s grief awareness week, which allowed all of us to come together and show our support for bereaved children.

When a child dies, most of the focus is usually on the adults, rather than the siblings. It is recognised that children react to loss differently, but regardless of that, children require support to adjust to change and to understand what has happened. Families who use the Scottish Cot Death Trust’s services are often worried about how their children are going to cope. When they are in that position, parents worry about their children, rather than focusing on their own grief.

The Scottish Cot Death Trust offers a valuable home-visiting bereavement support service that enables the organisation to meet parents and children together. For more specialist support for children, referrals can be made to play therapy and filial therapy, where parents are taught how to offer support to their children through structured play.

Referrals are often made to specific support that is tailored to the child’s age and available in the area where they live. To make that possible, the trust works collaboratively with a number of other organisations, including Seasons for Growth, Richmond’s Hope, Winston’s Wish, Child Bereavement UK and Simpson’s Memory Box Appeal, which is known as SiMBA. The services that are offered by the trust and all the organisations involved not only are vital to the children and families who receive them but ensure that the widest support is available. Richmond’s Hope, which is based in Edinburgh, is about to open a centre in Glasgow, which is welcome news indeed. There are so many organisations doing sterling work in this vital sector that it might be worth while for the Parliament to consider a strategy to enhance that work.

It is well known that adults find it daunting to address and explain death to children when it happens. That is made even harder when the death is that of a child’s sibling and the adults are still grieving themselves. The introduction of the two resources that I am proud to highlight this evening has helped not only adults to approach the discussion of death with a child but children who are born into a family who have lost a child.

The first of those resources is “Rory’s Star”, which is a book such as people might pick up in a nursery or school. It is well illustrated and can be easily read by children. When the book was first published, there was no other resource available in Scotland to help young children following the death of a baby from cot death. The book, which is aimed at children, tells the story of a young girl who has just begun to get used to having a little brother when he passes away. It deals with her witnessing grief during that time and attending the funeral, and it reassures children that it is okay to cry about the loss of their brother or sister. For grieving parents, who must struggle to come to terms with the sudden death of their child while still being a good mum or dad to the children who remain, the book is an invaluable resource.

Wilma Carragher’s son Andrew passed away in 1990 from cot death, aged 16 weeks. The trust invested money that she raised in creating a second book called “Andrew’s Rainbow”. It is in the same vein as “Rory’s Star”; it, too, is written for children and is beautifully illustrated.

Following the launch of “Rory’s Star”, Wilma became aware of a gap in sibling support for children who have been born into a family after the death of a child. It is important that those children, who are often called rainbow babies, are supported through any grief that they feel for their brother or sister. There will be photographs of their sibling and other family members, and their family will have important days in the year when they remember their brother or sister. They will form a bond with their sibling through their family sharing memories and looking at photographs. It is also important that they know that they are not a replacement for the child who has died, as some may wonder whether they would have been born if their sibling had not passed away.

The idea is that the child is like a rainbow after a storm. The beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, that does not mean that the storm never happened or that the family is not still dealing with its aftermath; it means that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may hover, but the rainbow provides a counterbalance of colour, energy and hope.

It is complex situation for any young children who have an older sibling who appears only as a baby in a photograph. They may tell people that they have an older sibling or include the sibling when drawing family trees or other activities. They may wonder what their older brother or sister would look like. Would they look alike? Would they share the same interests?

“Andrew’s Rainbow” contains the words of rainbow children. It was written to help both parents and professionals explore some of the children’s feelings about being born into a family after the loss of a sibling.

I was prompted to bring the debate to Parliament by the two books that I have highlighted. I sincerely hope that the debate will assist with promoting the support and resources that are available to children. By holding the debate, we acknowledge the work of all the organisations that highlight the importance of supporting children and adults through bereavement, and commend the work of all the organisations that are engaged in this difficult area that is of immense importance to us all.

Photo of Malcolm Chisholm Malcolm Chisholm Labour

I congratulate Gil Paterson on securing the debate. I welcome all the different groups to the gallery. I looked only into the two groups that are mentioned in the motion: Grief Encounter and the Scottish Cot Death Trust. However, I would also like to thank the childhood bereavement network and Marie Curie for their useful briefings.

I suppose that most people say that all deaths are equal, but it always seems to me that the most terrible deaths are when a parent loses a child or when a child loses a parent. The Scottish Cot Death Trust is perhaps best known to the public as a result of the grief that parents feel when they lose a child. We are told that in Scotland a baby dies every nine days from cot death. That is absolutely awful and devastating for parents, but the motion emphasises that it can also be a heart-rending experience for the sibling of the child who has died. We can imagine that if we think of having to explain the sudden absence of a new life to a confused sibling. That is what the books that Gil Paterson has described seek to do—they are an honest and heartfelt way of answering some of the most profound and difficult questions that a child can ask in such a situation.

More generally, the trust seeks not only to support families, but to educate the public and professionals about how to reduce the risk of cot death. I pay tribute to it for its work.

In its briefing, the childhood bereavement network emphasises that children need support in grief. It also points out the long-term consequences, as well as the immediate consequences, if we fail to provide that support. We must bear that in mind.

The trust’s briefing also reminds us about how many children are affected in Scotland each year. Five per cent of children have been bereaved of at least one parent by the age of 16. It also emphasises the importance of schools and having sensible and flexible people and systems to provide support. That connects with one of Marie Curie’s two recommendations: that awareness of grief and bereavement should be built into the curriculum for excellence. Marie Curie also recommends that there should be a national co-ordinator for childhood bereavement in Scotland. I hope that the Government will reflect on those suggestions.

Grief Encounter is the other organisation that is mentioned in the motion. It also works incredibly hard to help children grapple with loss and death. It supports the family as a whole in such situations and aims to work closely with professionals in the sector, providing training to counsellors, teachers and company employees—people who work closely with children who have experienced loss.

As the motion reminds us, Grief Encounter organises children’s grief awareness week, which I think started on 19 November. It was very moving to read about the candle ceremony that commences the week’s events—a poignant way to remember loved ones who have been lost. The theme this year is supporting parents and carers who support grieving children. Grief Encounter also runs a helpline, which currently supports more than 300 people annually.

I pay tribute to the work of Grief Encounter, the Scottish Cot Death Trust and all the organisations concerned—those that are represented in the public gallery today and those that are not—that work in this very important field.

Photo of Kenny MacAskill Kenny MacAskill Scottish National Party

I, too, thank Gil Paterson for raising the issue and for his eloquent speech, which narrated the depth and complexity of the issue. It is not a high-profile one, but it is certainly high up in its consequence and effect and, indeed, its intensity for many people.

As we are all aware, the issue is hidden in many ways. That is perhaps for two reasons. First, it can be hidden because of age and the inability of a child to communicate. It can be because of reticence, the lack of maturity and the inability to verbalise feelings or speak about the situation with others. That can be compounded by the inability of adults to address the needs of the child. They might be concerned with their own grief, or the situation might simply be difficult. Those challenges multiply the problems that affect everybody when there is a loss.

Secondly, there is the culture in Scotland. We have a culture of “Big boys don’t cry,” and even girls are sometimes expected just to soak it up and get on with it. That is not just in Scotland; the western world is not particularly good at dealing with death. That has probably been compounded in recent years, but it is something that we have passed down through the generations. The older generation, who should be able to address it better, are not particularly good at helping those who are younger and who are struggling to cope.

This is a significant issue. The statistics that appeared in the briefing from the childhood bereavement network to which Malcolm Chisholm referred are substantial:

“2,400 parents died in Scotland last year ... leaving dependent children”.

There were

“3,900 newly bereaved children last year ... Around 3.5% of school-age children and young people (5-16) have been bereaved at some point”.

The briefing also notes:

“5% of young people have been bereaved of at least one parent by the time they reach the age of 16.”

The network goes on to narrate the mental and physical health outcomes and the effects on education and employment. It also mentions criminal and disruptive behaviour, sadly:

“The death of a parent by the age of 26 increases young people’s risk of conviction for violent offences.”

The statistics are rather stark.

I recall when I was Cabinet Secretary for Justice challenging the Scottish Prison Service about the difficulties that we have with women offenders, who are treated sympathetically for the loss and trauma that many of them will have gone through, and asking it about comparisons with young men. The Prison Service said that the same difficulties often apply to young men but that the culture of big boys not crying and simply soaking it up, which I referred to earlier, transcends them, so that they are not addressed and are never articulated.

That will have lifelong consequences for those young men and, sadly, it means them getting into the Polmont young offenders institution or the adult prison network. That is not to condone their behaviour—they have to address it and face the consequences of their actions—but we need to tackle the underlying effects and the manifestations of it. Sadly, such young men often try to address their bereavement and loss by the traditional Scottish method of self-medication through alcohol or drugs. That is why we need to address it.

We in Scotland are blessed by the agencies that Gil Paterson mentioned. I am glad to see that representatives of Richmond’s Hope are here. I visited the organisation, which is located in my constituency, and I am delighted to hear that it is extending its services elsewhere. It faces challenges in the resources that it has. A few people do an awful lot of good work with a large number of young people.

We need a strategy, but we also need delivery. We are in tight, straitened circumstances, which are probably compounded by what has been happening in another Parliament elsewhere today, but I ask the minister to ensure not only that we have that strategy but that we do what we can to ensure that we have the necessary resource for the outstanding organisations that Gil Paterson mentioned, which are necessary for every individual—and especially every child—who has suffered loss.

Photo of Nanette Milne Nanette Milne Conservative

I, too, thank Gil Paterson and congratulate him on securing a debate on his motion this evening.

There have been many members’ business debates in the Parliament on various awareness weeks, but I feel that it is particularly important for an issue such as children’s grief to be recognised here. The week exists to highlight the challenges that are faced by children who have been affected by bereavement and to make it clear that these children, wherever in the country they may be, should have access to support services to help them cope and rebuild their lives.

I note that, this year, the week has been co-ordinated with the charity Grief Encounter, which was established in 2003 to provide grief services to support bereaved children and their families, and I am pleased to have the opportunity to discuss this important issue on its very last day. I understand that since 19 November a number of activities have taken place across the UK, including promoting awareness on social media—through, for example, the thunderclap, which reached more than 850,000 people—and encouraging supporters to organise events such as training days and workshops for families.

The statistics on the number of children and young people who face this challenge are eye-opening. According to Grief Encounter, one in 29 children under the age of 16 in the UK will suffer the death of a parent. In its briefing paper, the childhood bereavement network suggests that, last year, up to 2,400 parents with dependent children died in Scotland. However, those figures are estimates, because, as the network points out, no official data is collected, which it argues makes service development even more challenging.

The outcomes of the bereavement of a close relative or friend to children and young people can be both immediate and longer term. When children experience such a sad loss, they experience a range of emotions; they might be concerned, confused and overwhelmed by all that is going on around them. Even if a child is helped through this difficult period, the effects of such a profound loss can impact on their education later on. My nephew and niece lost their mum when they were children; although my niece gave way quickly to her emotions and recovered well, my nephew did not and I am not sure that he has ever fully recovered from his loss.

According to research from the childhood bereavement network, children who have lost a parent are, compared with their non-bereaved peers, more likely to suffer from a mental disorder, 1.7 times more likely to attempt suicide in young adulthood and 50 per cent more likely to die before middle age. With regard to children’s education, the network notes that bereaved children can score half a grade lower in GCSE exams; in fact, girls bereaved of a sibling can score a full grade lower. Finally, the death of the parent of a child before the age of 16 is found to increase the chances of the bereaved child being unemployed by age 30. Such statistics are truly shocking and show the need for awareness of the issue.

In my region, we have the highly regarded Grampian Child Bereavement Network, which works to assist children and young people in accessing the appropriate support that they need to cope with bereavement. One of its resources is a book called “Muddles, Puddles and Sunshine: Your activity book to help when someone has died”, which offers invaluable practical and sensitive support for younger bereaved children. The book offers a structure and an outlook for the many difficult feelings that inevitably follow a loss, and it aims to help children make sense of their experience, reflect on their grief and find a balance between remembering the person who has passed away and having fun.

Society must become more open to discussing bereavement, and one area that has received only limited consideration is that of pre-bereavement. When a parent knows that they are going to die, the stress of not knowing what will happen can in many cases affect the child. NHS Choices has developed an information service for children that encourages parents to talk about their impending death and suggests that parents start a memory box to give children the opportunity to keep things that remind them of their time together. That can also be done with other family members after a parent dies.

I also welcome the work of the Scottish Cot Death Trust. It is perhaps impossible for parents and families who have not lived through it to understand the grief experienced following the loss of a child or baby. Having come close to losing my own son when he had liver failure at the age of 20, I often wonder just how I and my family would have coped had his liver transplant not been available or successful. I cannot begin to imagine how people can cope with the sudden death of a healthy baby, and I am so thankful for the work that the trust does to help parents and children in such a situation.

In closing, I ask the minister to take on board the need to include bereavement as part of teacher and support staff training, as it would fit with recent legislation on widening the scope of teachers and classroom support staff to meet the emotional and diverse needs of pupils. Finally, I congratulate all the charities who work in this area and the member on securing the debate.

Photo of Aileen Campbell Aileen Campbell Scottish National Party

I, too, put on record my thanks to Gil Paterson for raising the important issue of children’s grief awareness week. As Gil Paterson did, I extend my thanks to and welcome all the groups that are in the public gallery.

The debate has provided a very valuable opportunity to highlight children’s grief awareness week, which is organised by the Grief Encounter charity, and more widely to put on record our thanks for the excellent work that is being done across a range of different organisations and settings to provide what we all recognise is much-needed support to people, including children, who have suffered from a bereavement.

Bereavement is traumatic for anyone at any stage, of course. I think that Malcolm Chisholm made that point. It is particularly traumatic when that loss comes in early life. As Gil Paterson said, the statistics are stark. One in 29 children in the UK has lost a parent or sibling. Given the number of children and young people who are affected and the impact that the loss can have on them, it is crucial that we provide free, professional, compassionate support at a time when they are vulnerable.

In the context of support, I want to mention getting it right for every child. In the GIRFEC approach, the named person role will be made available to children and young children across Scotland from August 2016, following the passage of the Children and Young People (Scotland) Act 2014. The named person has a role to promote, support and safeguard the wellbeing of children and young people, and I have no doubt that that will be a useful mechanism by which people can find the support that they need. Families may well use the named person for issues that affect their child’s wellbeing, such as separation, loss or bereavement. The named person and GIRFEC approach will be a structure by which we can signpost children and families to groups with specialisms that are able to help. I hope that we can take on board the points that have been raised through the briefings that have been circulated for the debate, and the points that have been raised about what we need to do around the curriculum for excellence and to better recognise nationally the need to co-ordinate support for families and children at a vulnerable time.

I recently spoke with a constituent’s niece, Dr Rachel Fearnley, who has done academic research on the topic of bereavement. She described to me some of the areas on which she believes we need to concentrate in the context of grieving. She said that there is a gap in support in the pre-death period for some and that help kicks in only post bereavement for some. I think that Nanette Milne recognised and raised that point.

Dr Rachel Fearnley’s study said that children who are impacted by bereavement may suffer a social death. The cubs, scouts and sporting events that they used to attend may end while the focus is on the family member who is ill. She also told me about the need to consider adolescents who may find their own coping strategies. If there is not effective intervention, that may well lead to criminal or negative behaviour. I think that Kenny MacAskill also raised that point. We need to ensure that young adolescents do not cope with those things through self-medication or negative behaviour and that we act early to help those vulnerable young people to avoid that route.

Gil Paterson and Malcolm Chisholm described the trauma, pain and hurt of children who suffer bereavement, and Gil Paterson mentioned books that go some way to support families. His and others’ comments on the pain that is felt by siblings who lose a brother or a sister reminded me of an event that the Youth Cancer Trust organised, which involved hearing a brother speak about losing his sister to cancer. He described feelings of sadness and anger, but he also felt quite jealous that the focus was always on the sister. The complex wrangling of emotions that he had to go through showcased to me very eloquently our real need to provide emotional support to help those young people to cope with the trauma that they are going through.

As well as the legislative provisions that I have mentioned in the Children and Young People (Scotland) Act 2014, the Scottish Government provides funding to a number of organisations that support families at a time of loss. Those organisations include Child Bereavement UK, Cruse Bereavement Care Scotland and the Children’s Hospice Association Scotland. We need to ensure that we continue to provide support to organisations that are well placed to understand the complexity of the issue that we are debating.

Gil Paterson’s motion for the debate focuses on not just the impact of a child losing a loved one but the loss of a child, and notes the valuable work of the Scottish Cot Death Trust. I recognise that miscarriage or stillbirth can also have a huge effect on a family, and there are a number of measures in place to help health boards provide appropriate training to enable doctors and midwives to support parents at that vulnerable time.

Through the work of the early years collaborative and the maternity and children quality improvement collaborative, we are supporting practitioners to deliver improvements in services. Both collaboratives aim to reduce the rate of stillbirth, and a wide range of work has been taking place—for example, increasing the uptake of healthy start vouchers, joining up midwifery and addiction services for vulnerable families and supporting pregnant women to stop smoking. We have seen a positive downward trend in the rates of stillbirth.

I want to mention the work of Sands, which is a charity that undertakes work throughout Scotland with health professionals to improve the quality of care and services provided to bereaved parents and their families. The Scottish Government currently provides the organisation with financial support to help it continue that valuable work and to work with health boards to ensure that relevant staff receive appropriate education and training to support parents at that vulnerable time. I think that the clear message from this debate is that we need to ensure that that training and support is given not just to the professionals who work in the health sector but to teachers and others who come into contact with young people, and that it is appropriate and adequate for them.

Again, I thank Gil Paterson for introducing a debate on an important and emotional topic, which is difficult and complex. It requires us all to ensure that we truly get it right for every child and recognise the suffering and trauma that young people and their families can experience. We need to bring about a cultural change to deal openly in Scotland with grief and death.

We also need to ensure that we use this debate not just as one that we will go home from and forget, but as a platform for recognising the greater need to continue to support charities and organisations that help people cope with trauma, grief, suffering and pain. We must also ensure that we work practically together to ensure that there is on-going dialogue about that so that we can recognise where challenges exist and work together to overcome them.

We have to ensure that we are getting it right for every child and not just getting it right for some children some of the time. We want to ensure that children can cope with grief and trauma in a way that does not diminish their long-term aspirations and hopes, and allows them to fulfil their ambitions to live without having to continue to suffer the pain that they have gone through.

The Deputy Presiding Officer:

I thank you all for taking part in this important debate.

Meeting closed at 17:42.