Lancashire lecturer calling for improved support for bereaved families after sudden child deaths
Dr Emily Cooper's son Alexander and daughter Isabelle died due to a genetic condition
A Lecturer from the University of Lancashire is among researchers calling for improved support for families who experience the unexpected death of a child after she lost her own son and daughter.
Dr Emily Cooper's son Alexander and daughter Isabelle died due to a genetic condition which causes sudden cardiac death.
Support for families who experience the unexpected death of a child needs to be "urgently" improved, according to a team of researchers.
About 3,000 children die each year in England and Wales, with 30% of these being infants and children whose deaths are unexpected and sudden.
In an editorial in the British Medical Journal (BMJ), the experts, working with member of the House of Lords Baroness Ilora Finlay, say that existing support "varies substantially and unfairly".
Lead author Dr Katherine Hunt, from the University of Southampton, said: "No family should be left to struggle alone after the sudden and traumatic death of their child.
"The way we care for families in the aftermath of these devastating losses is a litmus test of the compassion of our society.
"Families need immediate care and support around the time of the death and beyond the initial period of death investigation.
"Care should be sensitive and integrated, with liaison between different services, such as emergency services, medical staff, child death review professionals and bereavement teams.
"Sadly, in most areas of the country this is currently lacking."
The research team is also launching a £1.2 million project called Quintet, funded by the National Institute for Health and Care Research (NIHR), to investigate and make recommendations to improve support and care.
For the three-year study, researchers will run a national survey of bereaved parents as well as health and care professionals to map what support is currently available.
Co-lead investigator for the Quintet study Anne-Sophie Darlington, professor of child and family psychological health at the University of Southampton, said: "Surprisingly little is understood about the very complex needs of families when they experience the deep trauma of the sudden death of a child and it is crucial that we gain evidence about their care needs and what helps them cope in the longer term.
"These kinds of deaths are very traumatic for families and also deeply affect professionals involved, both of whom need support."
Dr Emily Cooper, project co-investigator and senior lecturer in policing and criminal investigation at the University of Central Lancashire, said:
"We tragically lost our son, Alexander, in 2021 and daughter, Isabelle, in 2024 suddenly and unexpectedly due to a genetic mitochondrial condition (PPA2 deficiency) which causes sudden cardiac death.
"Upon meeting other bereaved families, we were shocked to discover just how inadequate and inconsistent the support is for those facing such a loss.
"The study will be transformational in helping families like ours receive the care they need, and provide a much-needed framework for professionals who support us."
The Quintet study, which also involves the Universities of Central Lancashire, Birmingham and Surrey, along with Shooting Star Children's Hospices and Forget Me Not Children's Hospice and charity partners 2Wish and SUDC UK, is set to provide its report in 2027.