Review into child bereavement support in Scotland recommends key changes to improve services

A new report on bereavement support for families and carers after a child’s death has made eight recommendations for improving services.

Scotland has one of the highest rates of child deaths in Western Europe, with one in four of those deaths being potentially avoidable, according to Healthcare Improvement Scotland, a public body that is part of Scotland’s NHS.

In collaboration with the charities Child Bereavement UK, Children’s Hospices Across Scotland (CHAS) and Sands, the stillbirth and neonatal death charity, a survey was distributed to families and carers who had experienced a bereavement, asking them to share their experiences.

The results varied, with some finding services practical and compassionate, while others had trouble accessing what they needed.

The difficulties for families and carers included accessing bereavement support, including support for the child’s siblings to help them make sense of their loss, engaging with professionals who knew their child well to help them understand why their child died, and feeling fully informed about Scotland’s child death review process.

The report, produced by the National Hub for Reviewing and Learning from the Deaths of Children and Young People (a collaboration between Healthcare Improvement Scotland and the Care Inspectorate) then assessed these experiences to see where improvements need to be made.

Recommendations, made to NHS boards, local authorities and other third sector organisations, have emphasised the importance of conducting reviews into the deaths of children and young people in a manner that is flexible, sensitive and family-orientated.

The report said families talked about the significant emotional impact of their loss, and the need for professionals to make more effort to recognise that their capacity to process information at the time of the death can be considerably affected.

Identifying a key contact for the family before, during and after the review process is also recommended in order to improve the process and to prevent them having to repeat their story to different professionals.

Donna Maclean, of Healthcare Improvement Scotland, said: “It’s vital we learn from these deaths, wherever possible.

“This report highlights how essential the views of families and carers are to understanding how services can learn from their experience and improve.”

She said work will continue with care providers across Scotland to make sure the recommendations made become standard practice.

The charities involved in the collaboration have also welcomed the report.

Rami Okasha, chief executive of CHAS, said: “When a child dies, it is devastating for family and carers.

“Many children in Scotland die from causes that cannot be prevented, but we should always look for learning and ask whether anything could have been done differently.

“Hearing the voices of parents and carers is essential. No-one knows their child better. This is a very welcome report and will set Scotland on a world-leading path.”

Charlotte Bevan (pictured), from Sands, said: “Hearing from families about events surrounding the death of their child, in their own words, will not only help us understand what happened in an individual tragedy, but will also identify lessons to save lives in the future.”

Edith Macintosh, interim chief executive at the Care Inspectorate, added: “It is vital we learn from all child deaths and that the voices of families and carers are put at the very heart of understanding what happened and how care can be improved.

“We must engage families and carers in the review of their child’s death and ensure whenever a child dies, every family receives the support they need, wherever they live in Scotland.”

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