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Bereaved parents call for action to end preventable sepsis deaths

Health / Thu 14th Dec 2023 at 10:24am

FOLLOWNG a report from the National Child Mortality Database released today, parents who lost their children to sepsis have spoken out about what needs to happen to prevent future child deaths. 

Fifteen per cent of child deaths in England over the last three years are related to infection, according to a new report published today [14th December] by the University of Bristol’s National Child Mortality Database (NCMD) team. 

The report uses the NCMD’s unique data on all child deaths in England to examine 1,507 infection-related deaths between April 2019 and March 2022, with the clinical signs of sepsis reported in 701 child deaths. 

UK Sepsis Trust Founder & Joint CEO Dr Ron Daniels, who contributed as a report author, said: “It’s staggering to learn that almost one in every six deaths in children is caused by infection. Whilst not every death will ever be preventable, this report clearly highlights that modifiable factors may have saved many of these children’s lives. It’s clear that there is an urgent need to empower parents and carers, to ensure that health professionals listen more closely to families, and to work closely with people from vulnerable communities to design messaging that is relevant and accessible to them. Martha’s Rule when implemented will be a hugely important step, but it is one small part of the system wide solution we need to stop avoidable deaths from infection in children.”

UK Sepsis Trust Ambassador Melissa Mead, whose son William died of sepsis on 14th December 2014, and who reviewed the report from the perspective of a bereaved parent said: “For this report to be published on the anniversary of William’s death felt quite poignant. It’s a really sad day, if I’m honest, and this is makes for really sobering reading. I’m really disheartened. It feels like William’s life didn’t matter and that the same thing is happening time and time again, and I just feel like no one is listening to us – certainly me as a parent – and it scares me.”

Helen and Daniel Philliskirk lost their 16-month-year-old son James to sepsis in May 2022.

hey took him to Sheffield Children’s Hospital on multiple occasions but were dismissed by doctors and told he had chicken pox – but a postmortem examination found that he had developed sepsis after a Strep A infection, with no evidence of chicken pox present.

His parents have given their support to calls for Martha’s Rule, after their own inquest experience found that neglect by the hospital contributed to James’ death.

“Just trust your gut; you know your child best,” said Helen. “I think people would always rather see children and verify that they are healthy or verify that things are OK rather than people be at home worried and things get missed and ultimately lead to very unwell children or sadly, children dying.”

The NCMD report also found that children under one were at greater risk of infection related death than other age groups, but also that risk varied by ethnic and socio-economic background.

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.

During their son’s illness, Mohammed Elsiddig and Duaa Siyed Ahmed were repeatedly dismissed by healthcare professionals despite their respective medical qualifications, and their son Yousef died of sepsis on 5th February 2023, just after his first birthday.

They have shared Yousef’s story with the UK Sepsis Trust to help raise awareness of sepsis, while also hoping to reduce the impact of cognitive bias in the NHS.

Duaa said: “Although it’s extremely difficult for us every day, nothing can bring Yousef back but at least we can do something to prevent this from happening to other families.” 

Mohamed said: “Our message to the healthcare professionals is please listen to parents because they know their kids better, and please show them respect and empathy. Whenever you are dealing with a child with fever please think and ask yourself ‘Could this be sepsis?’ and if you are not so sure please do not feel ashamed to seek senior advice, whether at night or during the day. Always follow the national guidelines because it’s very sensitive to detect sepsis. Finally, please pay attention and do not fall into unconscious bias and stereotyping.” 

Read the report: ncmd.info/wp-content/uploads/2023/12/Infection-related-deaths-of-children-and-young-people-in-England.pdf 

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