Hansard

Some six months ago, a neighbour asked whether I would meet members of the Scottish Cot Death Trust who were seeking assistance. Although I agreed, I took it for granted that the trust, like so many other organisations, would be looking for additional resources. I was, therefore, taken by surprise that my assistance was being sought only to explore ways in which the work of the trust could be exposed to the wider public in order to make the public more aware of the unnecessary early deaths of babies and young children through cot death. The trust particularly wanted to use the date of its 25th anniversary to raise awareness of the wide range of services that it provides, hence my seeking support for the motion to be debated tonight. I put on record my thanks to those members who shifted their debates in order that that could happen. I am very grateful for that.

I can imagine nothing more devastating than the loss of a child. I remember cases in the past in which the loss of a baby or child was unexplained and the stories that were written in the press insinuated—or, even worse, accused parents of—foul play. Most of us will be aware of high-profile cases, one of which was reported not that long ago, with the media pointing the finger at a celebrity. What dire, horrific cruelty for that person to experience being accused of responsibility for the death having just lost their child and not knowing why. Even after their name has been cleared, parents in that position are left with a feeling of guilt, wondering what could have been done to prevent the tragedy. That is why the work of the trust is vital.

The trust’s aims are to fund research into possible causes of cot death, to support families that have been bereaved as a result of cot death and to educate parents and professionals in how to reduce the risks of cot death. The work that is done by the Scottish Cot Death Trust has brought about a different approach from the authorities and the press, who now have some sympathy for the bereaved families and a much better understanding of the truth than they had before.

When the trust was formed, in 1985, there were 153 cot deaths a year. In the 25 years since the trust began, there has been a significant reduction in the annual number of cot deaths—it is currently 40 a year. However, that still means that we lose one healthy baby every nine days to cot death in Scotland. Cot death occurs in every part of Scotland and affects every sector of society. Although it occurs 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 cot death can also occur in older children; therefore, sadly, it can occur wherever children are sleeping.

In the early 1990s, the back to sleep campaign was the most significant awareness campaign ever implemented, and the Scottish Cot Death Trust was instrumental in ensuring its implementation throughout Scotland. The campaign aimed to educate all parents and carers about the need to place babies on their backs for sleeping rather than on their fronts, as they had previously been advised. It resulted in an immediate decline in the number of cases of cot death and continues to be one of the most important pieces of advice for parents. However, the campaign did not eradicate cot death completely—a common misconception that is held today.

It is estimated that approximately 2,000 children are alive today who might have suffered cot death had it not been for the research and education provided by the Scottish Cot Death Trust. Over the years since its formation, the trust has provided vital support for hundreds of families throughout Scotland. The support services on offer have been further developed, and the trust today offers an impressive range of support for families that are affected by the loss of a baby or young child to cot death.

The trust’s community services nurse will visit families at home, regardless of where they live in Scotland, to provide information about cot death and the services that are available from the trust. Time will be spent listening to the family and discussing the support that is available to help them to cope with their loss. A professional counselling service is available to everyone who is affected by the loss of a baby or child through cot death. The service is available across Scotland and is provided free of charge to bereaved families.

When a parent has lost a baby or child to cot death, the arrival of a new baby can bring huge anxiety that it might happen again. The Scottish Cot Death Trust’s next infant support programme aims to support parents during subsequent pregnancies, after the birth, and for as long as the support is needed. As part of the next infant support programme, the trust can provide bereaved parents with a breathing monitor, on loan for up to 12 months, to offer them peace of mind with the new baby. The monitor will sound an alarm if the baby stops breathing. All parents will receive resuscitation training before receiving the monitor so that they know what to do if the baby stops breathing. The Scottish Cot Death Trust provides that service to many hospitals across Scotland.

The Scottish Cot Death Trust is involved at every level, from counselling bereaved parents to funding national and international research, all in the attempt to eradicate cot death. Members of the trust are in the public gallery tonight listening to the debate. They want the Parliament to support their campaign this year to raise awareness of the services that they provide to end cot death. They ask of us so little, and we owe them so much.

17:12