Child Death Reviews: Scottish Government Steering Group Report

Executive Summary

One Thousand One Hundred And Nine (1,109) deaths of people, aged 0-18 years, were registered in Scotland, in the years 2011, 2012 and 2013. The end of life does not mean the end of care.

Scotland has a higher mortality rate in children and young people compared to many other Western European countries. In Scotland each year, there are approximately between 350 and 450 deaths of people aged under 18, with most of them occurring in children aged under one year old.

Modifiable factors, preventable factors and lessons at different levels ought to be learnt, considered and acted upon from these life ending events.

Every child death deserves a review. The overarching purpose of the review will be to ensure that information is collected and learning shared which may prevent future child deaths or contribute to child health and wellbeing.

An economic methodology which can be used to quantify the value of a life saved, or death avoided, is the "value of prevented fatality" approach - "VPF". This approach is taken by the United Kingdom Department for Transport to monetise prevented road and rail fatalities. It is based on an estimated willingness to pay to avoid a casualty, taking into consideration a range of factors. The current estimated cost per casualty, from 2013, amounts to a VPF of One Million Seven Hundred And Forty-Three Thousand Pounds Sterling (£1,743,000), per life.

The recommendations of this report cost far less.

Scottish Ministers, in 2014, accepted the recommendation of the Child Death Reviews Working Group report^[1] - that Scotland should introduce a national Child Death Review System and that a Steering Group be established to develop the process and to identify costs and funding.

A Child Death Reviews Steering Group was established and met on 5 occasions from January to June 2015. The strong desire of the Steering Group is that a Child Death Review process should be instigated with minimal delay. Subject to the detail of this report, the Steering Group's recommendations are summarised below and set out in full in Chapter 6:

a. A Scottish national child death reviews system should be established comprising one National Resource Centre [the NRC], along with 3 regional offices, based in the North, West and East areas of Scotland. This should be an independent system - independent of existing structures.

b. Reviews should be conducted on the deaths of all live born children up to the date of their 18^th birthday and for care leavers in receipt of aftercare or continuing care at the time of their death, up to the date of their 26^th birthday.

c. National Records of Scotland/NHS Central Register should be commissioned to inform the NRC of all deaths registered in Scotland up to the date of the 18^th birthday.

d. Local Authorities should be commissioned to inform the NRC of all deaths of care leavers in receipt of aftercare or continuing care up to their 26th birthday at the time they notify the Care Inspectorate.

e. The review system should review deaths of children and young people, who die in Scotland and who are resident in Scotland. This would include, for example, students studying in full time education, and deaths in hospices. Arrangements should be put in place for a Scottish child dying outside Scotland, and for a child dying in Scotland who does not reside in Scotland.

f. Reviews should be conducted in a collaborative manner across all agencies and with a learning approach. Reviews are not to establish professional blame or responsibility. Reviews are to consider modifiable and preventable factors, with a purpose of learning lessons to prevent avoidable deaths. Other processes, e.g. criminal investigations or significant case reviews should take place prior to a child death review, with the outcomes of these processes informing the child death review process.

g. Child Death Review Panels (CDRPs) should meet monthly, reviewing approximately 10 deaths at each meeting; with monthly meetings generally alternating between neonatal reviews and older child/young person death reviews.

h. The National Resource Centre should notify the relevant Regional Office of deaths to be reviewed within 2 days of notification of the death. The Child Death Review process should commence with the issuing of a request for information from relevant agencies by the Regional Office, within 7 working days of notification from the NRC. The desired conclusion of the process ought to be attained within 4 months, for the majority of reviews. The process requires inherent flexibility.

i. Family engagement is a central element of the process, if appropriate and desired by the family, following the guidance notes annexed to this report.