John Story’s campaign for better Type 1 diabetes diagnosis in children, launched after his daughter Lyla died aged two, has prompted NICE to update its guidance and GP surgeries to be required to carry blood glucose testing equipment
Lyla Story’s dad John has campaigned for changes in NICE guidelines since the passing of his daughter, 2.(Image: The Story family)
A grieving dad who took his campaign to improve early diagnosis of Type 1 diabetes to Downing Street is taking comfort in the fact his daughter’s story is “protecting other children”, after updates were made to national guidance. John Story’s daughter Lyla passed away aged two from undiagnosed Type 1 diabetes, despite her parents raising the alarm.
In a letter sent to Mr Story, Parliamentary-Under Secretary of State for Public Health and Protection Sharon Hodgson acknowledged that the changes – which also mean GP surgeries will be required to carry blood glucose testing equipment – have happened “because of your campaign and engagement” and praised the family’s determination to turn tragedy into action. The minister wrote: “The courage you have both shown to campaign so powerfully, at such a time of unimaginable grief, is truly inspiring. It will help ensure no other families suffer as yours has.”
John’s campaign was launched following Lyla’s death, after early signs of her type 1 diabetes were not recognised by the NHS . Concerning symptoms, including increased thirst and more frequent wet nappies, were reported by Lyla’s mother, Emma Story, but Lyla was diagnosed with tonsillitis during a GP appointment. She tragically died in her sleep on May 3, 2025, just 16 hours later.
John and Emma launched a petition in her memory calling for Lyla’s Law. They proposed embedding NICE Guideline NG18 into law and to introduce a ‘test, don’t guess’ framework to ensure children receive timely care and resources, preventing them from reaching diabetic ketoacidosis – a potentially life-threatening complication.
Among the most significant developments is confirmation that the National Institute for Health and Care Excellence (NICE) has already updated its NG18 guidance following the campaign. The guidance now reflects that a child can present with diabetic ketoacidosis (DKA) – a life-threatening complication of Type 1 diabetes – without having an existing diagnosis of the condition.
John said: “When you’ve fought this hard, for this long, and you finally see Government confirm real, concrete changes, like every GP surgery in the country now being required to have a blood glucose meter and the right equipment, it hits you in a very personal way. On the way back to Leeds train station I felt Lyla beside me, and admittedly, I became weepy. But these were happy tears, tears of pride for our little girl. I told my wife straight away. Everything I’m doing is because of Lyla and now also a beautiful community to boot. Every step forward is part of her legacy. I told Emma and NHS England that Lyla’s life will not be in vain and that she is already changing the system.”
NICE has also agreed to convene an independent expert clinical panel to review recommendations surrounding the identification and diagnosis of Type 1 diabetes in children. In another major victory, the Care Quality Commission (CQC) has updated its guidance so that GP practices are now required to have blood glucose testing equipment immediately available. The move means GP surgeries across England must now have blood glucose meters, in-date testing strips and lancets on site to enable rapid blood sugar testing when a child presents with symptoms suggestive of Type 1 diabetes or diabetic ketoacidosis.
The Government also confirmed that a major national report by NHS England’s Getting It Right First Time (GIRFT) programme will examine why children continue to present in diabetic ketoacidosis before diagnosis and make recommendations aimed at improving early detection and reducing avoidable harm. Further measures include increased distribution of Diabetes UK’s “4Ts” awareness campaign materials across GP practices nationwide and the development of new Type 1 diabetes education and training resources for healthcare professionals through Digibete, which is commissioned by NHS England. The letter says ministers and NHS England will continue working closely with the Story family and that the shared objective is to “ensure no other family has to endure the devastating consequences of a missed T1D diagnosis.”
John said: “We lost Lyla because the system failed her. To know that national guidance has changed, that the CQC has strengthened its requirements, and that NHS England is now actively working with us, tells me that her story is protecting other children and even adults for that matter.” He said he plans to keep going to work on closing “the biggest gap” which he says is accountability. “Under Lyla’s Law, if a child presents with symptoms of Type 1 Diabetes, a GP cannot simply dismiss them. There must be a formal warning mechanism and mandatory training,” he said. “Personally, this is about making sure no other parent stands where we stand. It’s about turning grief into something that saves lives. It’s about honouring Lyla in the only way we can now, by fixing the failures that took her from us.”
John says he is working with NHS England, clinicians and DigiBete on a training module for practitioners. He plans to continue to work with NHS England, the Health Secretary and MPs to make sure Lyla’s Law becomes a lasting safeguard.
For more information about the dangers of type 1 diabetes in babies and infants click here.
For more information about the Lyla’s Law petition, visit: https://petition.parliament.uk/petitions/728677 .
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