This report draws on data from the National Child Mortality Database (NCMD) to investigate deaths in children with a learning disability and autistic children, and to draw out learning and recommendations for service providers and policymakers.

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This NCMD thematic report aims to identify trends in child mortality among children and young people with a learning disability and autistic children, investigate factors associated with these deaths and identify common themes, to help inform policymakers, commissioners, those providing services to children and young people, and those involved in reviewing deaths of children and young people.

We are aware that the content of this report may be distressing for some readers.

This report draws on data from the National Child Mortality Database (NCMD) to investigate infection related deaths in children and young people, and to draw out learning and recommendations for service providers and policymakers.

Every child or young person whose death is linked to infection is a precious individual and their deaths represent a devastating loss for parents, siblings, grandparents, carers, guardians, extended family and friends.

This NCMD thematic report aims to identify common characteristics of children and young people who died with and because of an infection, investigate factors associated with these deaths and identify common themes, to help inform policymakers, commissioners, those providing services to children and young people, and those involved in reviewing deaths of children and young people.

We are aware that the content of this report may be distressing for some readers.

Key findings in brief

• There were 1,507 infection related child deaths between 1 April 2019 and 31 March 2022 (3 years); an overall rate of 4.20 deaths per 100,000 children per year. This was the equivalent of 15% of all child deaths in this period.
• In 37% (n=553) of these deaths, the infection was thought to be a complete and sufficient explanation of death (6% of all child deaths).
• The risk of death varied according to the age of the child. Children under 1 year of age were more at risk of dying from infection than any other age group. Over half (61%) of deaths where infection was thought to provide a complete and sufficient explanation of death occurred in children under 1 year of age, with a further 16% of deaths between 1 and 4 years.
• Risk also varied by the ethnicity of the child. Children from an Asian/Asian British or black/black British ethnic background were at higher risk, with children from a Pakistani ethnic background at the highest risk of all.
• Children living in urban areas had a higher risk of dying from infection than those in rural areas. The chance of dying of infection in the most deprived neighbourhoods was twice that of those living in the least deprived neighbourhoods.
• Overall, in 90% of the infection related deaths the child had an underlying health condition, including 68% who had a life-limiting condition (e.g., cerebral palsy), and 22% who had another underlying health condition (including prematurity). 10% had no underlying health condition.
• In children where infection provided a complete and sufficient explanation of death, nearly a quarter (24%) had no underlying health condition.
• Of the 425 children aged 5 to 17 years who died with infection, a high proportion (67%) had a learning disability. In the cases where the infection provided a complete and sufficient explanation of death, 52% of the children in this age group had a learning disability. Pneumonia (lower respiratory tract infection) was identified in 75% of the deaths of children with a learning disability.

This NCMD thematic report focuses on traumatic injuries, which can occur as a result of vehicle collisions, drowning, violence or maltreatment and a number of other events. It aims to identify common characteristics of children and young people who die as a result of physical trauma, investigate factors associated with these deaths and identify common themes to help inform policymakers, commissioners, those providing services to children and young people, and those involved in reviewing deaths of children and young people.

We are aware that the content of this report, which includes some detail of methods of death, may be distressing for some readers.

Key findings in brief

• There were 644 deaths of children and young people due to traumatic events between 1 April 2019 and 31 March 2022 (3 years); an overall rate of 17.72 deaths per 1 million children per year. 6% of these deaths occurred abroad.
• There were 211 deaths of children and young people due to a vehicle collision over the 3 years, with 62 in 2019-20, 71 in 2020-21, and 78 in 2021-22.
• There were 160 deaths of children and young people due to violence or maltreatment during the 3 years; 35 (22%) were infants under 1, 28 (18%) were aged 1-4 years, 27 (17%) were aged 5-14 years, and 70 (44%) were aged 15-17 years. When adjusting for the number of children in the population, children under 1 had a risk of death over 5 times greater than the average.
• There were 84 drownings of children and young people during the 3 years. Nearly half (38 (45%)) occurred in children under 5, 20 (24%) in children aged 5-14 years and 26 (31%) in those aged 15-17 years.
• Other deaths reported included deaths as a result of drug or alcohol poisoning (n=47), accidental strangulation or suffocation (n=42), falls (n=31), choking or foreign object consumption (n=21), fire or electrocution (n=21), falling objects (n=10), animal attacks (n=6) and other traumatic injuries (n=11). Deaths from drug or alcohol poisoning may have reduced over the 3 years.

This report draws on data from the National Child Mortality Database (NCMD) to investigate sudden, unexpected and unexplained deaths in both infants and children and young people, and to draw out learning and recommendations for service providers and policymakers.

When a child dies suddenly and unexpectedly, it represents a devastating loss for the parents, wider family and the child’s whole community.

This NCMD thematic report, the fourth published by the NCMD programme, aims to quantify the number of sudden unexpected deaths of infants and children in England, the proportion of these deaths that remain unexplained following review by a Child Death Overview Panel (CDOP), and the demographics and characteristics of these children. It provides detailed analysis based on the unique data collected and held by the NCMD, as well as testimonies from the lived experience of families and comprehensive recommendations for policymakers and professionals to ensure positive change in the future.

The figures detailed in this report represent precious lives lost and many families who endure the life-long impact of the lack of an explanation for why their child died. It is our hope that the publication will make a difference towards ensuring that no family has to go through this in the future.

Key findings in brief

• Of all 6,503 infant and child deaths occurring between April 2019 and March 2021 in England, 30% (n=1,924) occurred suddenly and unexpectedly, and of these 64% (n=1,234) had no immediately apparent cause.

Infant deaths (under 1 year)

• There was a link between unexplained deaths of infants and deprivation. A significantly larger proportion of unexplained deaths were of infants living in the most deprived neighbourhoods (42%) than those in the least deprived neighbourhoods (8%).
• There was a strong link between sudden, unexpected infant deaths and sleeping arrangements. Where it was known, 98% (n=124/127) of unexplained deaths occurred when the infant was thought to be asleep, and of those, 52% (n=64/124) of deaths occurred while the sleeping surface was shared with an adult or older sibling. Of the 64 deaths where the sleeping surface was shared, for 60% this sharing was unplanned and at least 92% were in hazardous circumstances e.g., co-sleeping with an adult who had consumed alcohol or on a sofa. Of the 124 deaths that occurred during apparent sleep, at least 75% identified one or more of the following risk factors related to the sleeping arrangements: put down prone (face down) or side; hazardous co-sleeping; inappropriate sleeping surface when sleeping alone; inappropriate items in the bed.
• Unexplained deaths among infants were more common in males (64%) than females (36%), and were strongly associated with low birthweight, prematurity, multiple births, larger families, admission to a neonatal unit, maternal smoking during pregnancy, young maternal age, parental smoking and parental drug misuse.

Child deaths (1-17 years)

• Both explained and unexplained deaths in this age group were associated with a history of convulsions. Where data were available (n=30), there was a history of convulsions recorded in 27% of children whose deaths remained unexplained in this age group. This incidence was similar to children whose deaths went on to be explained.
• Sudden and unexpected child deaths in this age group were highest in the most deprived neighbourhoods.
• For sudden and unexpected deaths that occurred during 2020 and had been fully reviewed by a CDOP (n=204), 84% went on to be explained by other causes.
• There were at least 32 unexplained deaths in 2020 of children in this age group.

This report draws on data from the National Child Mortality Database (NCMD) to investigate how illness around the time of birth affects the health of children up to the age of 10, and to draw out learning and recommendations for service providers and policymakers.

When a child dies, at any age, the cause of their death may have originated in an event that occurred in, or around, the time that they were born. It may be that they were born prematurely (before 37 weeks gestation), suffered an injury during or shortly after birth, or suffered a perinatal infection. This report aims to understand patterns and trends in child deaths where an event before, or around, the time of birth had a significant impact on life, and the risk of dying in childhood. 

This report – the third such thematic report from the NCMD – also includes analysis of the modifiable factors (those factors that, had they been different, may have prevented the child from dying) identified in the review of these children’s deaths by Child Death Overview Panels (CDOPs). 

Key findings in brief

• From a public health perspective, it is possible that neonatal illness contributes to 72% of all deaths under 10 years of age. 
• Children who received additional care after birth (neonatal care) made up 83% of children who died before their 1st birthday, 38% of deaths in the next 4 years, and 27% of deaths between the ages of 5 and 9.  
• For babies born alive, at or after 22 weeks gestation, who subsequently died before 10 years of age between 1 April 2019 and 31 March 2021, half of the deaths occurred in children over one month old. 
• There is a clear association between childhood death following neonatal illness and learning disabilities. Over half of the children who died also had learning disabilities.  
• Where deaths were found to be caused by a perinatal event, the majority (78%) were caused by prematurity-related conditions. 13% were caused by perinatal asphyxia, 4% were caused by a perinatally acquired infection, and 4% were due to other causes.  
• Modifiable factors were identified in 34% of the deaths reviewed. The most common were smoking in pregnancy, lack of involvement of appropriate services, and maternal obesity. 

This report draws on data from the National Child Mortality Database (NCMD) to identify the common characteristics of children and young people who die by suicide, investigate factors associated with these deaths and pull out recommendations for service providers and policymakers.

Every child or young person who dies by suicide is a precious individual and their deaths represent a devastating loss, leaving a legacy for families that can have an impact on future generations and the wider community. As with all deaths of children and young people, there is a strong need to understand what happened, and why, in every case. We must also ensure that anything that can be learned to prevent future child suicide or young suicide is identified and acted upon.

This report, the second thematic report from the NCMD, looks at deaths that occurred or were reviewed by a child death overview panel between 1st April 2019 and 31st March 2020.

Key findings in brief

• Services should be aware that child suicide is not limited to certain groups; rates of suicide were similar across all areas, and regions in England, including urban and rural environments, and across deprived and affluent neighbourhoods.
• 62% of children or young people reviewed had suffered a significant personal loss in their life prior to their death, this includes bereavement and “living losses” such as loss of friendships and routine due to moving home or school or other close relationship breakdown.
• Over one third of the children and young people reviewed had never been in contact with mental health services. This suggests that mental health needs or risks were not identified prior to the child or young person’s death.
• 16% of children or young people reviewed had a confirmed diagnosis of a neurodevelopmental condition at the time of their death. For example, autism spectrum disorder or attention deficit hyperactivity disorder. This appears higher than found in the general population.
• Almost a quarter of children and young people reviewed had experienced bullying either face to face or cyber bullying. The majority of reported bullying occurred in school, highlighting the need for clear anti-bullying policies in schools.

The risk of child death in England linked to deprivation. 

This report, which is based on data for children who died between April 2019 and March 2020 in England, finds a clear association between the risk of child death and the level of deprivation (for all categories of death except cancer). More specifically, Child Mortality and Social Deprivation states that over a fifth of all child deaths might be avoided if children living in the most deprived areas had the same mortality risk as those living in the least deprived – which translates to over 700 fewer children dying per year in England.

This analysis shows what can be achieved when we pool our knowledge in order to learn lessons at a national level. We now ask that everyone involved in planning and delivering child health or social care services implement strategies to reduce social deprivation,” Professor Karen Luyt, NCMD Programme Lead

Commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England, this report includes analysis of 3,347 children who died in England between 1 April 2019 and 31 March 2020 and investigates the characteristics of their deaths to identify if socio-economic deprivation is associated with childhood mortality.

What we found
The most common age at death was less than 1 year (63%) and more boys than girls died (56.5% vs 43.5%), while the majority of children who died lived in urban areas (87.8%). By linking each child’s address to the UK government’s ten deciles of deprivation (calculated using seven indicators of income, employment, education, health, crime, access to housing and services, and living environment), it was determined that child mortality increased as deprivation increased. More specifically, on average, there was a 10% increase in the risk of death between each decile* of increasing deprivation.

For deaths that were reviewed by a Child Death Overview Panel (CDOP) as part of the national Child Death Review (CDR) process, this report is able to provide further insights. A total of 2,738 child deaths were reviewed in the period from 1 April 2019 to 31 March 2020 (though the year of death ranged from 2012 to 2020) and, of these, we were able to link 98% to deprivation deciles. Analysis of these more detailed data shows that the proportion of deaths with modifiable contributory factors increased with increasing deprivation (factors relating to the social environment were the most common). While, overall, at least 1 in 12 of all child deaths reviewed had one or more factors related to deprivation identified.

Importantly, Child Mortality and Social Deprivation also contains case studies from CDOPs that focus on poverty – with the aim of reducing the number of child deaths where deprivation appears to be a factor going forward. These exemplar projects highlight the value of using local learning, and provide practical inspiration for the kinds of interventions that could be implemented across the country.

Call to action
The report’s authors are now calling on policy makers and those involved in planning and commissioning public health services as well as health and social care professionals to use the data in this report to develop, implement and monitor the impact of strategies and initiatives to reduce social deprivation and inequalities.

This request is underlined by Professor Sir Michael Marmot, Director of UCL Institute of Health Equity (who published the Marmot Review and its follow-up report on health inequalities in England in 2020) who wrote an insightful foreword for this report. Known for the Build Back Fairer campaign, he states “In a rich society, deprivation should be avoidable – particularly the kind that leads to deaths of infants and children”. Not only does he welcome this report’s broad view of ‘avoidable’ (by focussing on deprivation) but he also commends the case studies of both children who have died and CDOPs that are implementing campaigns to reduce deaths related to deprivation.

Finally, we would like to express our thanks to everyone who contributed to this report, either directly or indirectly, as part of the national Child Death Review process. We also acknowledge that the data presented in this report represent babies, children and young people who have died; and each and every death is a devastating loss. While no two deaths are the same, we can nonetheless better understand and derive learning if we pool information from all deaths. As such, we hope that the true value of this report will be realised by using the data to review policy in order to reduce social deprivation and inequalities to improve the life chances of future children.

To read the report in full, use the link below: