Health Secretary determined to improve type 1 diabetes diagnoses as “lasting legacy” for toddler

The Secretary of State for Health and Social Care is “determined to make real improvements in diagnosing type 1 diabetes” to ensure no child is “let down by the NHS”, following the death of two-year-old Lyla Story from undiagnosed type 1 diabetes last year.

During a meeting yesterday with Lyla’s father, John Story, Wes Streeting admitted more must be done to improve how quickly the condition is recognised.

He said: “NHS England is working on how it can better support staff to diagnose patients as quickly as possible”, adding that he hopes “Lyla’s lasting legacy is one that saves lives.” 

After committing to meeting with John while speaking on BBC Radio Humberside in January, the Health Secretary sat down with the bereaved father, who presented the case for mandatory type 1 diabetes testing for children whenever any of the ‘4 T’s’ appear: Toileting, Thirst, Tiredness and Thinning.

This comes after the NHS missed the signs when John’s daughter showed symptoms of the condition, such as increased thirst and more frequent wet nappies. Lyla tragically died in her sleep just 16 hours after being diagnosed with tonsillitis by a GP, despite Lyla’s mother, Emma Story, reporting concerning symptoms at the face-to-face appointment.

Mr Streeting said: “When I heard about the tragic death of John's daughter Lyla, mere hours after seeing a GP, I was shocked that a child so young could be taken so cruelly by a condition as common and manageable as type 1 diabetes.

"I'd like to thank John for meeting me and speaking so candidly of his heartbreaking loss. The courage he has shown to campaign so powerfully, at such a time of unimaginable grief, is truly inspiring and will help ensure no other families suffer as his have.”

He added: “No child should be let down by the NHS the way Lyla was, and I'm determined to make real improvements in diagnosing type 1 diabetes to make sure it never happens again.”

John said: “Sharing Lyla’s story with Mr Streeting was something I felt I had to do. I am pleased with how the meeting went and hopeful that her legacy could lead to real change, helping to protect other children from the same heartbreak.”  

To honour their daughter’s memory and help protect other children, John and Emma launched a petition calling for Lyla’s Law. The proposed legislation would embed NICE Guideline NG18 into law and 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.  

After the petition surpassed 121,000 signatures in December 2025, MPs held a Parliamentary debate on March 9 to discuss the proposal.

During the Westminster Hall debate earlier this week, MPs from across the political spectrum attended to discuss proposals for routine testing of babies, toddlers and young children for type 1 diabetes.

The Parliamentary Under-Secretary of State for Health and Social Care, Sharon Hodgson, the Labour MP for Washington and Gateshead South, said that “more needs to be done” to ensure children with type 1 diabetes are diagnosed promptly and accurately, with clearer guidance needed to improve care for young people.

Mrs Hodgson: “I was deeply affected when I heard that a child so young had been taken so cruelly by a condition as common and manageable as type 1 diabetes. No child or their family should be let down in this way.”

Tom Gordon, Chair of the All-Party Parliamentarian Group for Diabetes and Liberal Democrat MP for Harrogate and Knaresborough, said: “Ensuring that every GP practice has access to relevant glucometers and that the staff are confident about recognising the 4 T’s is one of the most simple and effective ways we can reduce those missed opportunities. 

“Everyone knows the key signs of some health conditions – heart attacks or strokes, perhaps – but sadly, type 1 diabetes is not one of those. We can do more in the House to put the issue at the front of the public’s mind. 

He added: “Through better awareness, faster testing and continued research, we can ensure that fewer families experience the trauma of delayed diagnosis.  

“If we ended up with Lyla’s Law, we would be honouring the memory of children such as Lyla and the determination of family members such as John, who are campaigning so powerfully for this change.”

Several MPs emphasised how simple it could be to introduce routine testing for type 1 diabetes in children. 

Josh Newbury, the Labour MP for Cannock Chase, said: “A single finger-prick blood glucose test is cheap and takes seconds,” while Irene Campbell, the Labour MP for North Ayrshire and Arran, stated: “The rapid finger-prick glucose test is readily available and can be administered quite easily.”

Sarah Bool, the Conservative MP for South Northamptonshire who has type 1 diabetes herself, said: “I start by paying tribute to Lyla Story, a little girl whose death, aged two, from undiagnosed type 1 diabetes has brought us here today. 

“I wish I could have been giving her a tour of Parliament rather than talking in this capacity, but her name will go down in the history of Parliament, in Hansard, because of the dedicated work that has been done.”

She added: “I pay tribute to her parents, Emma and John, who are with us in the gallery and who have campaigned tirelessly to raise awareness of this condition. I commend their courage and determination in the face of such grief. I think they have much greater strength than many of us would have in a similar situation.”  

During the debate, MPs shared a range of real-life cases highlighting the urgent need for earlier diagnosis of type 1 diabetes in children.

John said: “Hearing the many examples shared by MPs during the debate really brought home how common these tragic cases are. Knowing that our campaign for Lyla’s Law resonates across the House gives us hope that changes can be made to protect other children.

He concluded: “Lyla was bright, full of life, and had her whole future ahead of her. But in a matter of days, everything changed. She became unwell, and like so many parents, we trusted the system to protect her. That trust was misplaced. By the time her condition was recognised, it was too late.”

To access the full debate, titled ‘Type 1 Diabetes: Infant Testing’, on Hansard, 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.