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.

The authors of this report wish to acknowledge that the death of each child is a devastating loss that profoundly affects bereaved parents as well as siblings, grandparents, extended family members, friends and professionals. They also wish to thank all the families who shared their data and experiences, and the Child Death Overview Panels who submit detailed evidence on every death to the database.

Further help, support and guidance

Bliss Advice from Bliss encourages parents and carers to quit smoking, to help reduce the risk of illness for babies and children who are at higher risk of infection. Bliss also provides information for parents and carers on how to avoid infections in babies. How can I help my baby avoid infections? | Bliss
Group B Strep Support

A charity working to eradicate Group B Strep (GBS) infection in babies and provide support and information to families and professionals.

It also provides information on GBS and pregnancy and on what steps can be taken to reduce GBS infection in newborn babies when risk factors are identified before or during birth.

The RCOG recommends that all pregnant women are provided with an information leaflet about GBS. The link included here is to an online leaflet that the GBS charity co-wrote with RCOG, available for free in 15 languages including English.

https://gbss.org.uk/

https://gbss.org.uk/info-support/about-group-b-strep/what-is-group-b-strep/

https://gbss.org.uk/professional-resources/free-resources/gbs-information-in-your-own-language/

e-Learning for Health Learning materials on infections; modules include prevention and control and antimicrobial resistance.

https://portal.e-lfh.org.uk/Component/Details/459777

https://www.e-lfh.org.uk/programmes/antimicrobial-resistance-and-infections/

Kit Tarka Foundation / The Lullaby Trust

Kit Tarka Foundation works to prevent newborn baby deaths primarily through raising awareness of neonatal herpes, funding research, and providing advice for healthcare professionals and the general public.

Kit Tarka Foundation is winding down, and The Lullaby Trust will be reviewing the advice to integrate it into the existing advice that The Lullaby Trust provides to families and professionals.

https://www.kittarkafoundation.org/

https://www.kittarkafoundation.org/neonatal-herpes-info-and-advice

https://www.lullabytrust.org.uk/the-lullaby-trust-and-kit-tarka-foundation-saving-more-babies-lives/

https://www.lullabytrust.org.uk/about-us/newborn-infection-prevention-campaign/

Meningitis Research Foundation Meningitis Research Foundation provides support to those whose lives have been affected by meningitis and septicaemia. https://www.meningitis.org/get-support/bereavement
Meningitis Now Meningitis Now’s vision is a future where no-one in the UK loses their life to meningitis and everyone affected gets the support they need to rebuild their lives. https://www.meningitisnow.org/get-support/bereavement-support/
The Outdoor Education Advisers’ Panel (OEAP) The Outdoor Education Advisers’ Panel (OEAP) and the UK Sepsis Trust have produced a guidance document on sepsis awareness for educational establishments. https://oeapng.info/downloads/download-info/7-2a-sepsis/
Refuge The charity Refuge provides a 24 hour, freephone, national domestic abuse helpline.

0808 200 247

https://refuge.org.uk/

Tommy’s The Tommy’s Pregnancy Hub guidance provides information on recognising symptoms of infection, and of sepsis, and on what measure can be taken to prevent infections in the baby units. https://www.tommys.org/pregnancy-information/premature-birth/protecting-your-premature-baby-from-infection
The UK Sepsis Trust The UK Sepsis Trust seeks to educate healthcare professionals, raise public awareness and provide support for those affected by sepsis. https://sepsistrust.org/
Travelling Abroad with Children Advice for children travelling abroad by Public Health Scotland. Parents should be aware of what to do if their child becomes ill whilst abroad, including how to access emergency medical treatment. Parents should be encouraged to try and identify health care facilities prior to departure.  https://www.fitfortravel.nhs.uk/advice/general-travel-health-advice/child-travellers

Children and young people with a learning disability and their carers 

 

People with a learning disability and their carers (a family member or support worker) are eligible for a seasonal free flu vaccine every year. Additionally, people with a learning disability, as well as a range of other chronic healthcare conditions, are eligible for COVID-19 vaccinations as priority “at-risk groups”.

Information on sepsis for people with learning disability and their carer is available from the NHS website.

NHS Sherwood Forest Hospitals video about sepsis for families and carers of people with a learning disability.

https://www.england.nhs.uk/learning-disabilities/improving-health/

https://www.england.nhs.uk/wp-content/uploads/2020/02/easy-read-how-to-avoid-sepsis.pdf

https://www.england.nhs.uk/wp-content/uploads/2020/02/easy-read-signs-of-sepsis-and-what-to-do.pdf

https://www.england.nhs.uk/wp-content/uploads/2020/02/easy-read-problems-after-sepsis-.pdf