People with type 1 diabetes urged to invite MPs to parliamentary debate on mandatory testing for children

The type 1 diabetes community is being urged to take action and invite their local MPs to attend a crucial parliamentary debate on mandatory type 1 diabetes testing for children when any symptoms appear.

The call comes from bereaved father John Story, whose two-year-old daughter tragically died last year after her type 1 diabetes went undiagnosed.

Determined to prevent other families experiencing similar heartbreak, John has secured a Westminster Hall debate on Monday, March 9, to discuss the case for introducing mandatory type 1 diabetes testing for babies, toddlers and young children as a routine part of medical assessments whenever symptoms are present.

Knowing that MPs are more likely to attend when the issue matters to their constituents, John, with support from Diabetes UK, is calling on people with type 1 diabetes, their families and supporters to reach out to their MPs to share their personal experiences of the condition and to invite them to take part in the debate.

Campaigners hope strong attendance from MPs will help drive meaningful change and improve early diagnosis rates, ultimately saving young lives.

On May 3, 2025, John’s daughter, Lyla Story, tragically died in her sleep just 16 hours after being diagnosed with tonsillitis by a GP, even though she was presenting classic symptoms linked to type 1 diabetes, such as a higher number of wet nappies, extreme tiredness, increased thirst and overnight weight loss.

To honour their daughter’s memory and to safeguard other children going forward, her family launched a petition advocating for Lyla’s Law, which would legislate NICE Guideline NG18, to make routine diabetes testing mandatory for babies, toddlers, children and adolescents whenever any of the ‘4 T’s’ appear: Toileting, Thirst, Tiredness and Thinning.

Having surpassed 121,000 signatures in December 2025, the Lyla’s Law petition is now set to be debated in Parliament next month.

John is also due to meet the Health Secretary on Tuesday, March 10, to continue discussions on the Lyla’s Law campaign.

“No family should have to experience the loss of a child from a condition that can be detected early, and easily,” said John.

He added: “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.

“Lyla’s Law is about protecting our children and giving parents the reassurance that their concerns will be taken seriously before it is too late.”

Colette Marshall, Chief Executive of Diabetes UK, said: “We have long campaigned to raise awareness of the 4 T’s’ and are proud to support the Lyla’s Law campaign to strengthen understanding among decision-makers, the public and healthcare professionals. Diabetic ketoacidosis (DKA) at diagnosis is still far too common, especially in children under five.

“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.”

To easily extend an invitation to your MP to attend the upcoming debate on mandatory type 1 diabetes testing for children, click here.

For more information about the dangers of type 1 diabetes in babies and infants, visit: https://www.youtube.com/watch?app=desktop&v=1DkLDF_Zc_s.

For more information about the Lyla’s Law petition, visit: https://petition.parliament.uk/petitions/728677.