I'm proud to be the National Clinical Lead for the National Hub, which 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 children from birth up to their 18th birthday, or 26th birthday for those who had been receiving care at the time of their death.
What we learned from bereaved families
The National Hub is a collaboration between Healthcare Improvement Scotland and the Care Inspectorate, working alongside other national agencies involved in child deaths, such as the Scottish Ambulance Service, Police Scotland and the Crown Office and Procurator Fiscal Service, 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 focused on 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, acknowledging where improvements must be made to reduce preventable deaths.
We found 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 overall, but one in particular has the potential to 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.
How we can make a difference
With the findings we now have, we are working 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 work with each health board area and share learning as we strive to continually change and improve.
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 Clinical Lead for the National Hub for Reviewing and Learning from the Deaths of Children and Young People