Dr Alison Rennie, Clinical Lead for the National Hub for Reviewing and Learning from the Deaths of Children and Young People, reflects on what we’ve learned during the first year of implementing new guidance and processes for child death reviews and how engaging with bereaved families is at the heart of every review. The National Hub is a collaboration between Healthcare Improvement Scotland and the Care Inspectorate.

In my time as a children’s doctor I have had the privilege of caring for children with many diseases and conditions, and I’ve seen innovative developments in medical care. I have also experienced the death of many children, so I am all too aware of Scotland’s unfortunate ranking in having amongst the highest child mortality rates in Western Europe.

Each death stays with you, and having supported bereaved families and carers following the death of their child, I recognise the importance of timely and sensitive engagement at such a sad time is vital.

I’m proud to be the National Clinical Lead for the National Hub, a collaboration between Healthcare Improvement Scotland and the Care Inspectorate. The National Hub seeks to address the child mortality rate by supporting the health and social care system in Scotland to reduce avoidable deaths of children and young people. This will be achieved by reviewing and learning from every death of live born children up to the date of their 18th birthday, or 26th birthday for those who had been receiving care at the time of their death. This learning will help with the redesign of pathways and services and will be used to recommend legislative change.

Year 1 of death review implementation

The National Hub started sharing national data on the deaths of every child in Scotland from 1 October 2021. Along with our implementation leads in each NHS board area and their local authority partners, we have worked over the past year to embed quality child death review processes and governance and share learning to promote the spread of positive change.

What we learned from bereaved families

Alongside our work with implementation leads and other national agencies involved in child deaths, including among others the Scottish Ambulance Service (SAS), Police Scotland and the Crown Office and Procurator Fiscal Service (COPFS), we also consulted parents and family members whose child had died. Working with our charitable partners, Children’s Hospices Across Scotland (CHAS), Child Bereavement UK and Sands, the stillbirth and neonatal death charity, we produced a report in June 2022: When a child dies: Learning from the experiences of bereaved families and carers.

The report highlighted the vital importance of the need to learn from child deaths and to keep the voices of families and carers at the forefront in order to gain invaluable insights into the life and care of their child, and acknowledge where improvements must be made to reduce preventable deaths.

We found through our research that while the levels of support received by families varied considerably across Scotland, examples of excellent, compassionate care were also present. The report gave a voice to families and carers, and the important role that clear and consistent communication has when it comes to ensuring that families understand the review process and feel properly supported throughout.

The report made eight recommendations to NHS boards, local authorities, public protection committees, third sector organisations and the National Hub to help improve the review process for families and carers. One recommendation that can bring significant positive impact for bereaved people is identifying a key contact for the family before, during and after the review process to ensure that the interests of families and carers are represented throughout. While levels of support for families varied a lot across the country, examples of excellent care were also highlighted.

How we can make a difference

With the findings we now have, we are working with our partners to produce national information that explains child death reviews and the role of the key contact in supporting families and carers following the death of a child. We’ll produce the information in more than one format to make it as widely accessible as possible and it will be distributed throughout Scotland, with extra local advice in some areas.
We’ll continue to refine processes, governance and engagement in each health board area and share learning as we strive to continually change and improve.

We want to thank everyone who has been involved in the programme to ensure the successful launch of the National Hub and implementation of our national guidance over the past year. In particular we want to thank those bereaved parents, carers and family members who helped us understand what it’s been like for them following the death of their child or children, and show us what we can do to help families feel more supported in the future.

While we can’t prevent all deaths, we hope the work of the National Hub and those involved in child death reviews will lead to a reduction in the child mortality rate over time, and will deliver a more appropriate and meaningful support for families whose child has died. I am confident change will come.

Dr Alison Rennie is a Consultant Paediatrician and Clinical Director of Community Paediatrics in NHS Greater Glasgow and Clyde with a special interest in children with complex disability. Her background of working with vulnerable families, and her experience in significant case reviews led to her interest in understanding and learning from deaths in childhood. She is seconded to Healthcare Improvement Scotland as national clinical lead for the National Hub for Reviewing and Learning from Child Deaths.

On Twitter, follow @AlisonRennie7 and the National Hub at @online_his using #CDRNationalHub.

Find out more

Read our guidance and report, and download resources at https://www.healthcareimprovementscotland.org/CDRNationalHub

You can also get in touch with the National Hub team at his.cdrnationalhub@nhs.scot