Type 1 diabetes testing for infants
Petitions debate
The petition
In May 2025, John Story created a petition asking the Government to provide funding so all infants are offered Type 1 Diabetes testing in routine care.
Over 121,000 people agreed with John and signed his petition.
Petitions debate
The Petitions Committee scheduled a debate on the petition in Westminster Hall
It was led by Irene Campbell MP on Monday 9 March 2026.
Irene thanked John for starting the petition and gathering so many signatures:
"I thank the petitioner, Mr John Story, for starting the petition and telling us the devastating story of what happened to his daughter Lyla, who tragically died when the warning signs of type 1 diabetes were missed.
"I also congratulate him on gathering over 120,000 signatures from across the United Kingdom on a topic that I know is incredibly important to him and many others: in my North Ayrshire and Arran constituency, there were 204 signatures."
Irene outlined what John hoped to achieve from his petition campaign:
“The petitioner met me to further explain the intent of the petition, which includes legislating so that National Institute for Health and Care Excellence guidelines 18 and 17 ensure that type 1 diabetes testing is carried out when any symptoms appear, and including information on type 1 diabetes in the red book for babies."
Government response
The Minister for Public Health and Prevention, Sharon Hodgson MP, responded to the debate on behalf of the Government.
She started by paying tribute to John, his wife and their petition campaign:
"I thank and pay enormous tribute to Lyla’s parents, John and Emma Story, who have campaigned so passionately and powerfully at a time of such unimaginable grief."
The Minister highlighted steps that have been taken to improve type 1 diabetes diagnosis, such as:
- NHS England raising awareness of symptoms linked to type 1 diabetes online and via clinical networks.
- An NHS RightCare toolkit to support integrated care systems to design, plan, and deliver high-quality treatment and care for children with all types of diabetes.
- The development of a primary care healthcare professional education module by NHS England clinical leaders and digital diabetes education providers.
Regarding the petition, the Minister said:
"While we are working on options to improve type 1 diabetes diagnosis, a requirement for a mandatory finger-prick test for those presenting with possible symptoms of type 1 diabetes is difficult to enact and could not be delivered quickly."
However, the Minister provided further initiatives to improve type 1 diabetes diagnosis:
- Plans by the National Institute for Health and Care Excellence (NICE) to update guidance and guidelines on the diagnosis and management of type 1 and 2 diabetes in children.
- Government funding of the delivery of research to develop and test new approaches for more early and accurate type 1 diabetes diagnosis through the National Institute for Health and Care Research (NIHR).
John's response
"Having the petition debated in Parliament was an incredibly emotional experience. Lyla was just two years old when she died from undiagnosed Type 1 Diabetes, an autoimmune condition, less than 16 hours after a GP visit. A simple, low cost urine or finger prick test would have saved her life.
"To hear MPs speak her name in Westminster Hall, and to know her story is helping to drive change, was both heart breaking and deeply meaningful.
"Lyla’s Law is not about screening healthy children, it is about mandating diagnostic testing when any symptoms of the 4Ts (Toileting, Thirsty, Tiredness & Thinning) warrant, so no child is ever sent home to die or rushed to hospital critically ill. This systemic issue must be resolved with urgency.
"I beg Parliament to ensure the Health Secretary delivers on his commitment to improving Type 1 diagnoses in primary care, and to make testing without assumption, mandatory training, “Red Book” information, and strict adherence to NICE Guidelines NG18 and NG17 a reality."
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