The next item of business is a members’ business debate on motion S4M-12916, in the name of Gil Paterson, on the 30th anniversary of the Sudden Cot Death Trust. The debate will be concluded without any question being put.
Motion debated,
That the Parliament acknowledges that 2015 marks the 30th anniversary of the founding of the Scottish Cot Death Trust; understands that the aims of the trust have remained consistent during this time; notes that it is committed to funding medical research in the hope of finding an answer to why babies and young children die, reducing the number of deaths by promoting the “reduce the risk” message and supporting people who have experienced such a tragedy; believes that it carries out vitally important work, not only by raising public awareness and through the use of multiagency professionals, but also in its support for parents, sometimes for years, who have lost a healthy child without explanation; understands that the trust works in partnership with NHS boards to provide the Next Infant Support Programme for bereaved parents in Clydebank and Milngavie and across Scotland who go on to have further children; believes that the trust offers apnoea monitors as well as a bespoke support service throughout pregnancy and for the first year after birth; notes that it has worked with the Scottish Government in producing the leaflet, Reduce the Risk, which highlights safe sleeping positions and the associated factors that are considered to raise the risk of sudden unexpected infant death; further notes that the leaflet provides information such as the view that, in the first six months of life, the safest place for the babies to sleep is in their own cot in the parental bedroom; understands that ways to reduce risk include avoiding sleeping on a sofa or chair with a baby, not smoking during pregnancy or around a baby after birth, avoiding sharing a bed with a baby if either parent is excessively tired, is a smoker, has drunk alcohol or has taken any medication that might cause drowsiness and avoiding letting a baby sleep on a surface that is neither firm nor flat, including infant swings, beanbags, bouncer chairs and infant car seats; understands that, although such seats can be fitted onto a pram chassis, they are not suitable places for infants to sleep; commends the trust on ensuring that these points are the main thrust of its 30th anniversary message to all parents, and wishes it every success in promoting this.
13:16
First, I thank you, Presiding Officer, for agreeing to the request to bring forward this members’ debate from this evening to this afternoon. That has allowed a number of the Sudden Cot Death Trust’s trustees to attend. Members will be aware that we have a late decision time at 8 o’clock, so I am very grateful that the debate was allowed to happen, particularly on this day. I also thank those colleagues who signed the motion and helped to secure the debate.
As a parent and a grandfather, I can think of nothing more difficult to imagine or in any way comprehend than the devastation that must happen when a baby has passed away. For that to happen at all would be hard enough for any parent and family to withstand, but not to know the reason for the loss is beyond all natural senses. Therefore, it is with some comfort, relief and respect that we have people who understand the gravity of such a horrendous human experience and who aim to help in a number of ways.
First, those people know that considerable support is needed for parents, siblings and extended family members when such tragedies strike. Secondly, they recognise that action is needed to fund medical research in the hope that the cause of the tragedies can be identified. With the available information, campaigns are launched to educate and inform those who care for babies and young children with a view to reducing the number of people who experience this particular horror.
How does that valuable work come about? For 30 years, the Scottish Cot Death Trust has been in the vanguard of doing that very work on our nation’s behalf. A group of individuals volunteering to do what must be the most difficult matter possible: counselling parents who have just lost their baby—many of whom, as a starting point, blame themselves for the death of their child—to the syndrome known as cot death.
The dedicated people of the Scottish Cot Death Trust ask for little in return from the Scottish Government or this Parliament, other than help to bring the issue to the wider public’s attention and to bring together those agencies that respond in the most appropriate way whenever a tragedy strikes.
When I was asked to lodge the motion in the hope of securing cross-party support and holding a debate, it was the very least I could do. Indeed, members in this Parliament appreciate greatly the need to give time to highlight the sterling work of the charity and to raise awareness of the counselling and support available for those in need. I hope that this debate will draw attention to some of the dangers for new parents, even if they already have children, which will go to reducing the numbers of babies and young children being lost to cot death.
The most important part of the trust’s work is how it helps to prevent cot death in the first place by funding research and highlighting ways in which parents can help to reduce the associated risks that increase sudden unexpected death in infancy. Alternatively, is it the counselling of families who have suffered such a terrible loss? It is, of course, both. Although the education and information that is provided will lead to a reduction in cot death, and I know that the trust is working towards zero tolerance of cot death, I fear that some families will need its help for some time to come.
In the 30 years since the trust was established, it has had an important, vital and wide-ranging impact. It has brought about a different approach from the authorities and, of course, the press, which now has some sympathy and a much better understanding of the truth than it ever had before.
Cot deaths occur in every part of Scotland and affect every section of society. Although they occur more frequently in deprived areas, more affluent areas are not safe from the heartache. Most cot deaths occur within the first year of life but they can also occur in older children; cot death can happen wherever an infant is sleeping.
In the early 1990s, the back to sleep campaign was the single most significant awareness-raising campaign ever implemented, and the Scottish Cot Death Trust was instrumental in ensuring its implementation across Scotland. The campaign aimed to educate all parents and carers that they should place babies on their backs for sleeping, rather than on their fronts as had been the previous advice. It resulted in an immediate decline in the number of cases of cot death and it continues to be one of the most important pieces of advice for parents. However, a common misconception is held today that cot death has been completely eradicated in Scotland, so the work continues.
The motion debated today outlines the key point that the trust is aiming to promote as part of its 30th anniversary message, which is to ensure that parents are given as much information and help as possible to prevent such a tragedy from happening to them.
Since it was formed, the trust has provided vital support for hundreds of families across Scotland. Over the years, the support services on offer have been developed further, and today the trust offers an impressive range of support for families who have been affected by the loss of a baby or young child to cot death. The trust does not just support newly bereaved families; it also supports those who are still affected by the loss of a baby, in some cases many years after the tragedy. Such long-term support is vital for many families, including those who go on to have another baby.
To see just how much work the Scottish Cot Death Trust does, we need only look at the spring edition of Scottish Cot Death Trust News. I know that most members received a copy, and I would be most grateful if they looked at them and passed them on. That would be a good bit of work for the trust.
The work carried out by the trust and its staff is immeasurable, and few words in the English dictionary can be used to fully acknowledge it, but there are at least two words that I would like to say at this moment in time and on behalf of the Parliament—thank you.
13:24
I congratulate Gil Paterson on securing this debate on the Scottish Cot Death Trust.
As members from across the chamber have done, I commend the trust on its work over the past 30 years, as it passes this important milestone. Since 1985, the trust has raised funds for research into the causes of cot death, educated the public, raised awareness of cot death and worked tirelessly to improve support for bereaved families. This afternoon is Parliament’s opportunity to thank the trust for the contribution that it has made over the past 30 years. The Scottish Cot Death Trust is a leader in its field. It promotes healthy infancies, informs policy, celebrates best practice and offers friendship and support to families who have, sadly, lost a child to cot death.
The debate also gives us an opportunity to remind ourselves that the trust’s work is not done and that our work is not done. It continues and it must go on. As the trust says on its website,
“A baby dies every nine days in Scotland from Cot Death”,
and there are parents who will never know fully the reasons why their apparently healthy baby died. Those parents deserve some answers and some understanding of how it has come to be that their child has been lost.
For new parents and their families, for health professionals and for society as a whole, we need to do more to understand the risks to infants’ health. The better we understand those risks, the more we can do to reduce them and, I hope, prevent tragedies in the future.
The motion that is before us provides a healthy summary of the key advice and recommendations that the Scottish Cot Death Trust has developed in conjunction with the Scottish Government. It reminds us that the safest place for a new baby to sleep is in a cot in the parents’ bedroom. It reminds us to avoid sleeping on a sofa or an armchair with a baby. It reminds parents to avoid sharing a bed with a baby if they have been drinking, are overly tired or have been taking medication that causes tiredness. It reminds us to avoid letting a baby sleep on a surface that is neither firm nor flat—for example, infant swings, baby-bouncer chairs or bean bags. That is all helpful advice, but it would not have been common or widely circulated back in 1985, when the trust was first established.
I understand that the information that the trust and the Government have produced is now available in an easy-read format. That is a welcome development; I stress the need for that advice and, indeed, all public health advice, to be as accessible as possible.
I want to pay tribute to the donors, fundraisers and volunteers who have supported the trust as it has carried out its work over the past 30 years. We have to remember that charitable organisations such as the trust would not be able to deliver their assistance and services without the kindness and generosity of their supporters. Some 86 per cent of the charity’s income comes from donations from the public, and from the organisation’s fundraising events and activities: the family fun days, fundraising balls, sponsored sky dives, marathons and 10km runs that ensure that the trust continues to be a vibrant organisation, and not just a competent provider of services but an energetic and efficient champion of healthy infancies.
Every parent and grandparent knows the joy that a child can bring to a family and how a new baby can change their lives for ever. They know the eagerness and anticipation that the family feels when a baby is on the way—the planning, the preparations and the decoration. They know how a baby can take over and become the focus of everyone’s attention and emotions. I cannot imagine what some people have had to endure: the feeling of shock and loss that comes when a new baby—a new addition to the family—dies without explanation, within a few months or even just a few weeks of their birth. My heart goes out to any parent who has ever been in that position. It might be some comfort to know that there is an organisation, in the form of the Scottish Cot Death Trust, that is there for them. However, it must be our shared ambition for the future to ensure that no more parents lose children to cot death. We must understand cot death and we must prevent it.
13:29
Let me start by thanking Gil Paterson for bringing this important subject to Parliament. There are very few of us who will not, at some stage in our life, meet a death; it is an inevitable part of being here in the first place. When the death is that of a child—of someone who is younger than we are—we feel that death most acutely. That is not simply because it reminds us of our own mortality; it is also because, of course, we experience the loss of someone who is precious to us.
One of my personal interests is genealogy. I happen to have been doing a longitudinal study of the St Giles parish in Edinburgh—of which Parliament is just on the edge—of 150 years ago. At that time, 150 years ago, in this relatively well-off parish, 50 per cent of children did not reach the age of 10, and half of those who died, died before the age of one.
Today we have vastly improved our care and our ability to deal with a range of conditions and diseases that affect our young. That fact throws into more stark relief the sudden unexpected and often unexplained deaths that come under the general heading “cot death”. There is no single cause of cot death, and we do not always satisfactorily identify the cause of the death.
As the number of young children who die has diminished, the pain and the sense of guilt that parents can feel when it happens has substantially increased. My father, who was a general practitioner, described bereavement in five stages: denial, which is often very short and in which the person does not accept what has happened; blaming oneself, in which the person blames themselves for something that they did not do; blaming others, because things were not done; depression; and finally accommodation, in which, it is hoped, the person comes to terms with the death and puts the happy memories that they have of the person who departed into some context that they will carry for the rest of their life.
A child even of the briefest period on this earth will leave memories for their parents and for all who have known them. I have not been in the fortunate position of being a father, but I am told that I am a relatively well-trained uncle and now great-uncle, godfather and, perhaps in the not-too-distant future, a great-great-uncle. Although I have not personally experienced fatherhood, I have watched and stood with those who have been parents. I have seen their pride and excitement when they bring in a new life that will take over from those of us who are, perhaps, now contemplating more acutely than we once did our own mortality.
As cot death has become more important as a reason why young people do not make it into adulthood, the importance of having the right kind of support in place has substantially increased. For that reason the Scottish Cot Death Trust is very much to be congratulated for its work. It is draining to support a person who is in mental despair and who has experienced loss. It is expensive, because it takes time to provide counselling to people—not just a pill for a week, but support, often for an extended period.
Over the past 30 years, we have seen the work of the Scottish Cot Death Trust supporting parents across Scotland and, I understand, working with people beyond Scotland. As Gil Paterson’s motion makes clear, in his constituency the trust is supporting the next infant support programme for bereaved parents. The motion mentions bespoke services through pregnancy and for the first year after birth, including the provision of sleep apnoea monitors.
There is one little thing that we need to think about. It is right and proper that we provide advice on how to minimise the occurrence of cot death, and Margaret McCulloch highlighted quite a few of the pieces of advice that exist. However, it is equally important that we reassure parents that it is not their fault that their child dies from cot death. They may have followed all the advice or may not have been aware of some of the advice, but it will almost certainly not—in 99 cases out of 100, and probably more—be the parents’ fault. That is precisely why the Scottish Cot Death Trust has to exist: it must reassure and support parents who do not know what more they could have done, when the answer may be that there was nothing more they could have done.
13:35
I place on record my thanks and congratulations to Gil Paterson on securing this afternoon’s debate to mark the 30th anniversary of the Scottish Cot Death Trust. I recognise the work of Lynsay Allan—the trust’s executive director—and her colleagues, who have made such an incredible difference to the families who have faced such a terrible tragedy. I also praise the contribution of the chair of the trustees, Dr John McClure, who I met in Florence at a world conference on sudden infant death syndrome more than 10 years ago.
As we have heard, one baby dies of cot death every nine days and about 40 infants die suddenly and unexpectedly in Scotland each year. Over the past 30 years, more than 1,500 children have died suddenly and unexpectedly, and no definitive cause of death can be found.
My youngest son, Liam, died from cot death in 1991. He was eight months old. I remember the horror and trauma of the moment, which have never left me. A series of images are frozen in time: the ambulance; the faces of the doctors and nurses at accident and emergency; the police; and later, the cold and remote manner of the pathologist during the post mortem. All that contrasted with the support of friends, family and neighbours—the phone calls, visits and hundreds of cards of condolence.
Many other bereaved parents have told me of the tremendous support that they received from the Scottish Cot Death Trust during the crucial first few months after their loss. That was certainly my experience.
As we have heard, the number of deaths has declined since the 1990s. They are now recorded as sudden unexpected deaths in infancy. Such deaths can occur in every part of Scotland and in all social strata. Most occur in the first year of the child’s life, and they can occur whenever an infant is sleeping. Twice as many boys die as girls, and second or later-born children are more at risk, as are pre-term, low-weight babies.
What can the trust do? As we heard, it has invested more than £3 million in research and development and has educated thousands of parents and professionals about cot death and how to reduce the risk. It has a range of resources that provide support, home visiting, counselling and befriending services. I particularly highlight the important work that is done with apnoea monitors and resuscitation training for parents.
Every bereaved parent reacts differently. Some may want contact support to last longer than others do. When I meet parents through the Scottish Cot Death Trust, they tell me that, having received support, they are better able to support their surviving children and to search for help elsewhere, through a general practitioner or private counselling.
At times of acute grief, it is easy to forget about surviving children, grandparents, aunts and uncles—and, with older children, those children’s pals. I praise the trust for its case review study, commissioned in 2000, which called for a multidisciplinary approach to get all the agencies to work together to minimise distress to families. I understand that NHS Quality Improvement Scotland attempted to roll that out throughout Scotland.
Losing a young, healthy baby is one of the greatest traumas that parents could ever face. For 30 years, the Scottish Cot Death Trust has been counselling, supporting and educating parents, as well as supporting the professional agencies that work with the families. Let us never forget its pioneering research work. We owe a tremendous debt of gratitude to all who are involved with the trust—the befrienders, the fundraisers and the health professionals. The work that they do is truly outstanding and makes a difference to many families. We honour their contribution and commitment.
13:38
I congratulate Gil Paterson on securing today’s debate and I pay tribute to his consistent work in the Parliament to support the Scottish Cot Death Trust. I am pleased to join other members in commending the excellent efforts of the Scottish Cot Death Trust—the only cot death charity in Scotland—and all those who work, volunteer or fundraise for it.
Despite being extremely rare, cot death—or sudden infant death syndrome—is still the most common cause of death for infants between one month and 12 months old in Scotland. A child dies from cot death every nine days.
As the father of six children, four of whom are still at school, I find it difficult to imagine the extent of the pain and darkness of losing a child. No parent should experience that, but the loss of a healthy infant suddenly and without explanation must be absolutely devastating and beyond heartbreaking. That is why all MSPs should be grateful that the Scottish Cot Death Trust is there to support bereaved parent constituents in such circumstances.
The trust’s website is a fantastic resource for parents and their families. I know several mothers and fathers who have suffered the awful trauma of a cot death, and the grief of parents over the loss of a baby or toddler is so intense that it is terribly difficult for relatives and friends to begin to know what they can say or do to alleviate that grief. Margaret McCulloch and other members have rightly highlighted that aspect.
Although it seems unlikely that all cot deaths can be prevented, the risk factors that are associated with cot death can be reduced. Like other members, I urge prospective parents to look at the “Reduce the risk of cot death” leaflet, which is clear and helpful and offers parents-to-be straightforward advice on such things as placing babies on their backs to sleep, breastfeeding, dummy use and keeping babies away from smoke.
Reducing risk factors, primarily by encouraging parents to place babies on their backs to sleep, has in the decades since the 1991 back to sleep campaign helped to gradually but notably decrease the incidence of cot death. However, we must continue to make progress in that direction.
As Gil Paterson’s motion makes clear, the Scottish Cot Death Trust not only supports bereaved parents and educates the public and healthcare professionals about cot death and ways of reducing the risks but is committed to funding medical research into cot death. That is very much to be welcomed. Since the trust was established in 1985, it has invested more than £3 million in research projects locally, nationally and internationally. We still know relatively little about the causes of cot death, and that is what we have to find out. Why, for example, are premature babies more affected, and why are second-born and later-born infants at greater risk than first-born infants?
I again warmly welcome today’s debate. On behalf of my party, I congratulate the Scottish Cot Death Trust on its 30th anniversary and thank all those who are involved in the trust for the work that they do on behalf of all our constituents. I wish them every success as they continue their critical and valuable work in the years ahead.
13:42
I join other members in congratulating Gil Paterson on bringing a debate on this important topic to the chamber again. I have no negative feelings about the fact that we are debating it again, as it is important that we continue to consider such an important subject.
The context of the Scottish Cot Death Trust’s 30th anniversary is a good one, and I join Gil Paterson in saying thank you to the trust and offering it our gratitude for the very important work that it has done over the years. The high-quality support that the trust provides through counselling and education is extremely valuable. As David Stewart said, we commend the hard work and dedication of those involved, because that support has a profound effect on those families who have been affected by cot death.
As a doctor, I dealt with families experiencing cot death, and it was difficult. In the early days, in the 1970s and 1980s, cot death was managed by people coming forward from various silos. A health visitor provided some support, but the police and a pathologist were also involved, and the different elements were not connected up. The multidisciplinary approach that we have had—as David Stewart mentioned—from 2000 onwards is critical in managing such situations. The police are now infinitely better at dealing with cot death than they were, and that is very welcome.
Apart from dealing with patients, I have a family member who suffered sudden infant death syndrome—or sudden unexpected death, as it is now called.
Cot death is the form of unexplained death that we are discussing today, and it is critical that it is differentiated in the public mind from other things that may occur; the worst end of that spectrum is infanticide or Munchausen’s syndrome by proxy. There is sometimes suspicion about those things out there among the public when an infant death occurs. As Stewart Stevenson said, when families have that experience and have feelings of guilt and self-blame, the whole thing gets very confused.
The educational role that the trust provides is critical. The summit that it held to foster collaboration was important. It is important to get a range of health professionals to interact with the family, for example nursing during pregnancy, when it is a second pregnancy, but also bereavement and other counselling. The toolkit provided is helpful to professionals and families alike.
There is a lot of information. None of us forgets the back to sleep campaign, which members have mentioned. It was one of the nicest slogans because it was so simple and so welcome and it made a fundamental difference. It seems extraordinary that it took until the 1990s for medical researchers to discover such a simple thing that made such a huge difference.
However, that does not remove the fact that we still have one death every nine days. It is critical that research goes on, because we still do not understand cot death. There is a lot of research that indicates the factors involved, which other speakers have mentioned.
Smoking is still important. We still have too many people smoking in pregnancy. It is about 18 per cent now. It has come down, which is very welcome, but we need to go further. Groups such as the family nurse practitioners who are supporting families who are more likely to experience cot death are important. Teenage mothers are more likely to experience it. The numbers are very small, but it is still more likely to happen to them. The fact that families with lower socioeconomic status are overrepresented is important.
Breastfeeding is important. I was disappointed to hear that the family nurse practitioner programme, which we all support and think is good, has achieved only a 5 per cent level of breastfeeding. We need to question why a highly focused, low case load programme has achieved only 5 per cent, given how important it is to the group involved. Breastfeeding is another of the factors involved. We know that it protects against infection, but there is also an association with cot death rates.
The reduction in the number of teenage pregnancies, which the Health and Sport Committee produced a report on, is welcome. The trend is beginning to move in the right direction, but there is still substantial variation across the country in the levels of teenage pregnancy. It is critical that we follow up that report. It was not produced that long ago and it needs to be looked at. I feel that there should be school-level publication of teenage pregnancies. When I went to Oldham I found that that was instrumental in changing the approach to teenage pregnancy. Schools that did not believe they had a problem with it suddenly realised when the figures were given to them that they had a serious problem with it, which they then addressed.
There are other groups of mothers beyond the very limited tight group covered by the family nurse partnership who might also have problems. Drug and alcohol abuse is another factor involved. We need to make sure that those mothers are supported. Health visitors previously worked with those focused groups. We have now removed the most difficult people, or the ones most needing help or the most at risk. The ones who do not qualify for family nurse partnerships need to continue to be supported. In Fife, there was an excellent programme supporting 600 families, but that has now been somewhat damaged by the removal of resources into the FNP. Frankly, that is unacceptable and it needs to be looked at. I hope that the Government will do so.
I hear that the positive change programme in Glasgow has similarly had problems since the FNP was established, so that needs to be dealt with, too.
I am looking at the Presiding Officer to see whether I am still all right for time.
You can have a little more time if you wish.
The other issue that I want to address is a difficult one, because it is still a matter of debate: swaddling. In some cultures, swaddling is the natural thing to do and the established cultural approach. It is important that we understand that, because it is thought that swaddling, which increases heat, can become a factor. We know that if a child is too hot, it is a factor. Getting proper advice on swaddling is important. I know that the Scottish Cot Death Trust has advice on that.
At one point, there was a question of whether the emissions from certain types of mattresses were a factor. That has now been addressed. Having the right bedding, clothing and temperature; avoiding smoking, alcohol and drugs; and not taking the baby into bed with you when there is any possibility of overlay, particularly when the baby is premature—all that sort of advice, which the Scottish Cot Death Trust has given, is extremely welcome. I hope that the trust will not have to go on for another 30 years and that we will find a solution. In the meantime, its programme, which educates the general public and supports families who have been bereaved in this way, is welcome and critical and must be supported.
13:51
I thank Gil Paterson for bringing the debate to the chamber. I note from the Official Report that five years ago he secured a similar debate, which recognised a quarter of a century of the Scottish Cot Death Trust. I join all the other members in congratulating the Scottish Cot Death Trust on its 30th anniversary, and acknowledge the important work that its executive director, Lynsay Allan, and its trustees, staff and many volunteers, past and present, have done over the past 30 years to support families who have lost their babies or young children to sudden unexplained death in infancy. I welcome all the points that members have made.
As members have said, any bereavement is traumatic. However, the sudden and unexpected death of a baby has a devastating impact on the family, which is why the support that the trust offers is necessary and greatly appreciated by the bereaved families affected. Interestingly, just last night in this Parliament there was an event celebrating the 10th anniversary of the Simpson’s Memory Box Appeal. There were some harrowing stories and many tears at that event, which brought home how devastating such a death can be.
As members have mentioned, thankfully recent years have seen a reduction in the number of sudden unexplained deaths in infancy. Until 1991, around 50 babies a year died in Scotland. That has gradually decreased to around 30 babies a year. Clearly even one death is too many, but thankfully the trend is going in the right direction. Figures from National Records of Scotland for 2013 and provisional figures for 2014 show a possible further drop in numbers, which is to be welcomed. Experts believe that the reduction is due to the advice that is given to parents to place babies on their backs to sleep. As Dr Simpson mentioned, that was such a simple message.
Supporting families has been, and still is, a fundamental aspect of the trust’s work. Most recently, it has introduced the Scottish co-ordinator role, which offers assistance to boards in conducting sudden infant death reviews where required, and the next infant support programme, through which the trust offers to work with each SUDI paediatrician in Scotland to ensure that bereaved parents who are expecting a new baby receive extra care and support during the pregnancy, and that those parents are supported after the birth.
The Scottish Cot Death Trust receives section 16(b) funding from the Scottish Government, which was £15,000 in 2014-15 for sleep apnoea monitors. It will receive a total of £120,000 over three years for its support post.
The Scottish Government SUDI group, of which the Scottish Cot Death Trust is an active participant, was established in December 2012. The group was set up to take a fresh look at this important area of work. In particular, it has considered how best to ensure that SUDI reviews are fully completed and it has looked at how to drive improvement locally and nationally.
The SUDI multi-agency toolkit, which is currently hosted by Healthcare Improvement Scotland, provides web-based guidance on the correct procedures in the event of a sudden unexplained death in infancy. That developed a standardised pathway and SUDI review process for all boards to follow when investigating a sudden unexplained death in infancy. The SUDI review process and toolkit have been used since 2011. NHS boards now have full responsibility for undertaking SUDI reviews.
The management of SUDI cases involves not just NHS professionals but professionals from Police Scotland, the Crown Office and Procurator Fiscal Service and, perhaps, the Scottish Ambulance Service. Often, child protection colleagues are also involved. The information-sharing processes between the agencies are critical.
The Scottish Government SUDI group has considered the information that is gathered from the SUDI review process and will consider further data analysis to drive more quality improvements of the process and improve the care and information that are provided to families who have been devastated by tragic losses.
The minister has properly talked about the wide range of professional support. Of course, the Scottish Cot Death Trust musters much of that to help those who are affected. However, is it not also the case that those who have experienced sudden infant death syndrome are often most valued by later sufferers, because they bring personal experience, which is often at least as valuable as the professional input that comes from the wide range of people who are involved in the trust and in the issue? That is a general feature of third sector bodies, of which the Scottish Cot Death Trust is a good example.
I absolutely agree that peer support is crucial, not just in this area of work but in many aspects of the work that I undertake. From the visits that I make to various organisations, I know that people learn much more from and have much more empathy with someone who has been through the same experience as them.
In the past two years, there have been two SUDI summits, which have been joint events held by the Scottish Cot Death Trust and the Scottish Government. The most recent summit, which I opened, took place in December 2014 and was an excellent day of sharing best practice, with the common goal of assisting bereaved families who experience SUDI.
This year, the Scottish Government set up the child death reviews steering group. The trust has a representative on that important group, to ensure that the perspective of bereaved parents is heard. The steering group will provide a report to ministers in the summer, setting out its recommendations for a child death review process.
As members have mentioned, the cause of SIDS is not known. It is possible that many factors contribute, but some factors are known to make SIDS more likely. Those include placing a baby on their front or side for sleep. We also know that the risk of SIDS is higher in cases where babies are born preterm or with low birth weight, or where the mother smokes over 20 cigarettes a day when pregnant or in families where there is socioeconomic deprivation or complex needs. As Dr Simpson said, where breastfeeding rates go up, there is less likelihood of sudden death. We are making good progress on teenage pregnancies, but more needs to be done on that.
The National Institute for Health and Care Excellence guidelines on postnatal care, which were updated in December 2014, agree with all that. We need clear evidence to say that one particular factor directly causes SIDS. NICE reviewed the evidence relating to co-sleeping—that is, when parents or carers sleep on a bed, sofa or chair with an infant—in the first year of an infant’s life. Some of the reviewed evidence showed that there is a statistical relationship between SIDS and co-sleeping. However, NICE was clear that the evidence does not show that co-sleeping causes SIDS. Therefore, the term “association” has been used in the recommendations to describe the relationship between co-sleeping and SIDS. NICE recommends that healthcare professionals should
“Inform parents and carers that the association between co-sleeping and SIDS may be greater”
if there has been alcohol consumption or drug use, or with low birth weight or premature infants.
I should also mention the “Reduce the risk” leaflet, which is given to every mother, antenatally or following delivery.
I again acknowledge the work that is done by the Scottish Cot Death Trust, and I wish the organisation continued success in the future, supporting families who are affected by the sudden unexpected death of a child or baby.
Many thanks, minister, and I thank all members for taking part in this important debate.
Previous
Business Motion