Parliament will discuss mandatory type 1 diabetes testing for children following family petition
The family of a little girl who died aged two from complications associated with undiagnosed type 1 diabetes have campaigned tirelessly to highlight risk for others.
The UK Government and Parliament have announced that a campaign will now be discussed to fund a mandatory offer of testing for type 1 diabetes in babies, toddlers, and young children as a routine part of medical assessments at the point of care following a successful petition campaign.
A petition run by the family of Lyla Story, who died in May 2025 following diabetic ketoacidosis (DKA) linked to undiagnosed type 1 diabetes and other complications, has recently passed the 100,000 signatures mark – meaning the motion has sufficient support to be considered for debate in Parliament.~
Since Lyla’s death (three weeks after celebrating her second birthday), her father John Story launched the petition with the UK Parliament for the introduction of legislation to improve diagnosis and introduce screening.
A statement from the UK Government and Parliament said: “Parliament is going to debate the petition “Funding so all infants are offered type 1 diabetes testing in routine care”. The debate is scheduled for 9th March 2026.”
The petition wording stated: “We believe that lives could be saved by doing this. Too many children are misdiagnosed, and this can tragically lead to loss of life.”
The petition was recently closed, having received 121,152 signatures.
The campaign received a further boost as the Secretary of State for Health and Social Care, Wes Streeting, has pledged to speak with John about his call for mandatory type 1 diabetes testing for children where any symptoms appear.
The Health Secretary has previously committed to improving diabetes care and detection as part of the NHS 10-Year Plan.
John now hopes to introduce him to Lyla’s Law, that calls for routine diabetes testing for babies, toddlers, children and adolescents where any of the “4Ts” (toileting, thirst, tiredness and thinning) are recognised.
Having become a passionate advocate for routine diabetes testing, John is determined to keep Lyla’s memory alive by safeguarding other children from the same outcome.
In an interview with BBC Radio Humberside recently, John made a direct plea the Health Secretary: “Mr Streeting, I have tried for seven months to meet with you to discuss the Lyla’s Law campaign.
“There are too many people getting diagnosed [with type 1 diabetes] in critical care, especially young children who cannot advocate for themselves and express what they are feeling, so please understand the urgency of this meeting.”
“Every day that passes, somebody else gets diagnosed [with type 1 diabetes] in critical care. It’s on your watch Wes, please meet with me.”
In response, the Health Secretary said: “That’s the easiest question to answer. Yes, I’ll definitely do that.
“If you pass me the details, I’ll get my office to get in touch as quickly as we can. That’s one waiting list that I can directly manage. It’ll be a lot faster than 18 weeks.”
John added: “Meeting with Wes Streeting is a crucial step for our campaign. I hope this conversation will bring Lyla’s Law closer to becoming a reality, so that no other family has to go through the heartbreak we experienced. This is about turning our tragedy into action and protecting children across the country.”
DRWF Chief Executive, Sarah Tutton, said: “Over last year our hearts have been consumed with the story of Lyla Story and the incredible work that her father John has undertaken to raise awareness about the tragic risks of undiagnosed type 1 diabetes.
"We couldn’t be happier that the family’s efforts were rightly recognised with John being awarded the QiC Diabetes People’s Award and we continue to support and promote their efforts which seek to change legislation and improve diagnosis and screening.”
View the Funding so all infants are offered Type 1 Diabetes Testing in routine care petition
Read more Addressing the challenge of misdiagnosis of type 1 diabetes in young people
Listen to the DRWF podcast interview with John Story, part of the DRWF Living with Diabetes podcast series
Read more about type 1 diabetes
For more information about the 4Ts, read the DRWF Signs and Symptoms of Diabetes information leaflet here
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