From 1 October 2021, Healthcare Improvement Scotland and the Care Inspectorate will be collecting national data on the deaths of every single child in Scotland to age 18, or 26 if receiving continuing care or aftercare. Dr Alison Rennie, Consultant Paediatrician and Clinical Director of Community Paediatrics at NHS Greater Glasgow and Clyde, and the National Clinical Lead for the implementation of the National Hub for Reviewing and Learning from Child Deaths, explains why this work is important and how we will make a difference.
During my 30 year career as a children’s doctor, I have seen children who died from neurological conditions, congenital disorders, prematurity, malignancies, infections, trauma, neglect and abuse. Each one stays with you. I have also witnessed exciting developments in treatments for conditions such a Spinal Muscular Atrophy, once previously universally fatal, and now hopefully curable. However, it is disappointing to note that Scotland still has a higher mortality rate for under 18s than any other Western European country, with over 300 children and young people dying every year. It is estimated that around a quarter of those deaths could be prevented. How can we make a difference? What can we learn and how can we change?
With no national system to support reviews into those deaths or to share national learning, there has been variation across services and across Scotland as to the quality of reviews and even whether reviews are carried out at all.
However, that is all about to change: from 1 October, the health and social care system in Scotland will work collaboratively to reduce avoidable deaths of children and young people by reviewing every death to inform the redesign of pathways and services, or to recommend legislative change. This includes the deaths of all live born children up to the date of their 18th birthday, or 26th birthday for care leavers who are in receipt of aftercare or continuing care at the time of their death.
Where death is inevitable, we aim to improve this process for children, families and carers by learning from quality reviews.
How this work is coordinated
In response to a request from the Scottish Government, Healthcare Improvement Scotland, in collaboration with the Care Inspectorate, set up the National Hub for reviewing and learning from the circumstances surrounding the deaths of all children and young people in Scotland.
The National Hub brings together representatives from across health and social care to develop quality guidance and develop a core data set to help services implement the methodology and to learn from each other’s experiences.
We also established an expert advisory group with representatives from health and social care as well as other agencies such as Police Scotland, the Procurator Fiscal and third sector organisations for their specialist advice around child bereavement.
The National Hub also channels learning from all over the UK to help reduce preventable deaths.
We’re working with National Records of Scotland (NRS) to develop a notification system for receiving data regarding the deaths of children and young people and we’ll directly collect national data from health and social care partnerships across Scotland from 1 October. Once we have enough data, the National Hub will assess how the methodology has been adopted nationally and identify important learning about preventable deaths of children and young people. All of this will feed into an annual report to share what we have learned over the previous year. We will highlight areas for change, and recognise aspects of good practice.
I hope that this exciting development is our opportunity to make a change to Scotland’s grim mortality data for children and young people. Can we make Scotland the best country to grow up in and one in which you are less likely to die before adulthood? I am proud to be part of the National Hub and join my many colleagues who will be using the Hub’s guidance to conduct quality reviews, share learning and change outcomes. Through working together in this way, we hope to make a tangible, positive difference to the lives and deaths of children and young people as well as the families and carers surrounding them. They deserve nothing less.
Dr Alison Rennie is a consultant community paediatrician in NHS GGC 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.
Follow Alison @AlisonRennie7 and follow the National Hub at @online_his using #CDRNationalHub
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