Diabetes community urged to call on MPs to attend ‘Lyla’s Law’ debate

MPs are being urged to attend a parliamentary debate next month on whether testing for type 1 diabetes should become mandatory when children present with symptoms.

The Westminster Hall debate, scheduled for 9 March, will consider calls for routine testing of babies, toddlers and young children who show signs associated with the condition.

It follows a petition backing the move, dubbed ‘Lyla’s Law’, which passed 121,000 signatures in December 2025.

The campaign was launched by John Story after his two-year-old daughter, Lyla, died from diabetic ketoacidosis (DKA) on 3 May 2025, 16 hours after being diagnosed with tonsillitis.

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Her type 1 diabetes went undiagnosed despite her family saying she had been showing recognised warning signs, including increased thirst, extreme tiredness, weight loss and more frequent wet nappies.

Lyla’s Law calls for the principles set out in NICE Guideline NG18 to be placed on a statutory footing, requiring healthcare professionals to carry out diabetes testing whenever a child presents with any of the ‘four Ts’: toileting, thirst, tiredness and thinning.

Mr Story is now asking people affected by type 1 diabetes to contact their local MPs to encourage them to attend the debate. He is also due to meet the health secretary on 10 March to discuss the proposals.

Mr Story said: ‘No family should have to experience the loss of a child from a condition that can be detected early, and easily.

‘By attending this debate, MPs have the chance to help turn tragedy into change and ensure that children showing symptoms of type 1 diabetes are tested without delay.’

The Diabetes Specialist Nurse (DSN) Forum UK said it stands with the Story family and the wider type 1 diabetes community in highlighting the ‘critical importance’ of early recognition and testing for the condition in children and adults.

On behalf of the forum, Bethany Kelly, clinical lead DSN, said: ‘Lyla’s tragic and preventable death is a devastating reminder of how quickly this condition can escalate when symptoms are missed or misinterpreted.

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‘As diabetes specialist nurses, we witness first-hand the consequences of delayed diagnosis, particularly DKA, which remains far too common in young children and adults.’

The DSN Forum also emphasised that it has worked hard to share the petition and welcomes the upcoming parliamentary debate as an important opportunity to ‘strengthen national understanding of type 1 diabetes and to explore how existing NICE guidance can be implemented more consistently across healthcare settings’.

‘Our thoughts remain with Lyla’s family, whose courage in sharing their story is driving vital awareness and helping protect other children,’ added Ms Kelly.

‘The DSN Forum will continue to work closely with the family to advocate for improved education, consistent clinical assessment, and timely testing so that no family has to endure a loss that could have been prevented.’

Mr Story’s campaign is supported by the charity Diabetes UK, which said DKA at diagnosis remains too common, particularly among children under five.

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Colette Marshall, chief executive of the charity, said: ‘Early diagnosis of type 1 diabetes saves lives and anyone presenting with symptoms should be tested immediately to help avoid DKA.

‘We are urging our supporters to email their MP and ask them to attend the debate in parliament because no child should become seriously ill simply because the signs of type 1 diabetes were missed.’