New report outlines steps needed to reduce child deaths from serious illness

The Before Arrival at Hospital (BeArH) report has been welcomed by parents
Child holding adult hand

“I knew something was wrong when she hadn’t woken for her bottle by 4am and she was almost grunting with her breathing. We went to A&E and at 9am we’d lost her. I can’t believe how quickly it all happened.â€

Placing parents with children suspected of having illnesses such as meningitis nearer to the centre of decision-making, simplifying health services, and ensuring children see the same health professionals will help accelerate treatment and reduce deaths.

This is according to research published by the University of Northampton (UON), Â鶹´«Ã½ and partner organisations*.

The Before Arrival at Hospital (BeArH) project looked at the pre-hospital journeys of children later diagnosed with a serious infectious illness such as meningitis and sepsis.

Researchers spoke with 40 parents and 30 health professionals, including hearing about the concerns raised by mothers whose children died from serious infectious illnesses such as sepsis after failures in the health system.

Infections such as these continue to be a major cause of childhood deaths in the UK, particularly in the first 5 years of life. The most recent analysis of child mortality data (from 2013-15) in England and Wales found that infection was associated with 20% of all childhood deaths (Ferreras-Antolín, Oligbu et al. 2020).

Researchers worked with parents and health professionals to understand what happens to children later diagnosed with a serious infectious illness, before they are admitted to hospital. 

They asked about every point on the child’s illness journey from falling ill at home, through all the contacts with health services up until they were admitted to hospital.


"It's every parent's worst nightmare"

Kerry Fisher and Rose Edmonson were two of the parents who contributed to the report, and explain why they welcome its findings. (Trigger warning - infant loss). 

Read their experiences in full.
Pictured: Rubie Fisher, who sadly died from Meningitis at six weeks old

The research aimed to identify points in this journey where improvements could be made, to ensure timely treatment and, ultimately, save lives. The findings include:

  • Parents feel powerlessness and a loss of control over their child’s health and their access to treatment.
  • Parents often report feeling criticised for using services in the early stages of the illness. This can lead to delay in seeking help again.
  • Parents and health professionals both miss signs and markers of serious illness.
  • The health system can be complex for both professionals and parents.
  • There is a lack of continuity of the health professionals caring for individual children – few see the same professional when seeking help again.
  • Risk averse agencies refer more suspected cases to hospitals, adding extra stress in the system. One emergency doctor quoted in the report commented: “We have made the haystack bigger. There is still only one needle, but the haystack is enormous.â€

The report outlines the need for further research into parents’ consultations with health professionals to identify causes of perceived criticism.

It also suggests a feasibility study for a safety-netting app, reducing the complexity of services and improving the continuity of health professionals involved in the care of each child with a serious infectious illness.

Tash Bayes, Research Assistant at UON was BeArH’s project manager. She said:

“We are very happy to share the important findings of the BeArH project, the implications for young children and their families and to outline our next steps. BeArH has been a multifaceted, multi-site project in collaboration with academics, health professionals, parents and charity organisations over three years. Their perspectives throughout the research were crucial; without them, conducting and completing BeArH would not have been possible.â€