Type 1 diabetes testing in young people could be the “first step in something massive” following MPs debate
Lyla’s Law was discussed in parliament last week after family’s successful petition campaign and will now be presented to Parliament.
A new bill to introduce routine type 1 diabetes testing for children displaying symptoms will be presented to Parliament next month.
The development follows a Parliament session where MPs discussed a call 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.
The family of a little girl who died aged two from complications associated with undiagnosed type 1 diabetes campaigned tirelessly to highlight risk for others.
Lyla Story died in May 2025 following diabetic ketoacidosis (DKA) linked to undiagnosed type 1 diabetes and other complications.
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.
Parliament debate
The petition passed the 100,000 signatures mark – meaning the motion secured sufficient support to be considered for debate in Parliament.
MP Irene Campbell told the meeting: “I would like to thank Mr John Story for his tireless campaigning on Lyla's Law.
“I hope, as he does, that no parent has to go through what he and his wife, Emma, has gone through again.”
The debate concluded with a verdict that “the ayes have it” to confirm that MPs backed the call for change.
John and Emma were joined by supporters in attending the discussion at Westminster. John said this is the “first step in something massive”.
He added: “Lyla's Law is getting closer to reality.”
Photo caption: left to right: Tom Gordon (Liberal Democrat MP and Chair of the All-Party Parliamentarian Group for Diabetes), Sarah Bool (Conservative MP), Amanda Williams (Diabetes Specialist Nurse Forum), John Story, Emma Story, Diana Johnson (Labour MP) and supporters deliver the petition to Number 10 Downing Street
“No child should be let down by the NHS” – Health Secretary Wes Streeting
The following day after the Parliament debate John and Emma met with Health Secretary Wes Streeting to further discuss their proposals.
Mr Story 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.”
He added that he “got a bit weepy” during the meeting: “I am not just feeling the raw emotion of losing Lyla, I am feeling the weight that everyone carries around type 1 diabetes and the stigma that they face.
“I feel a little bit lifted now, but, as with everything in politics, these things take time.
“Let's get education right, let's get accountability right and let's stop people getting too ill before they're diagnosed.”
Mr Streeting said: “I would like to thank John for meeting me today 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 am determined to make real improvements in diagnosing type 1 diabetes to make sure it never happens again.
“That is why NHS England are working on how we can better support staff to diagnose patients as quickly as possible and Lyla's lasting legacy is one that saves lives.”
Bill for universal type 1 diabetes screening in children to be presented
Sarah Bool, MP for South Northamptonshire, will introduce a bill to make provision for a universal national programme of screening for type 1 diabetes in children, under the House of Commons’ 10-minute rule, on 14th April.
Ms Bool is living with type 1 diabetes and said her world “entirely changed” following her diagnosis at the age of 33 and admitted she did not know the warning signs.
Speaking during the debate she added that Lyla’s name will “go down in history” and praised her parents for their ‘dedicated work’ in “tirelessly campaigning to raise awareness”.
Ms Bool said: “I have managed to secure that I will introduce a 10-minute rule Bill on Tuesday, 14th April to make provision for a universal national programme of screening for type 1 diabetes in children, building on all the work that John has been doing.
“A lot more research is needed, because the key thing is the age at which someone can be diagnosed.
“We are working on three potential age ranges at which there would be repeat tests. That is vital and fundamental for the future, to make sure that we do not have one in four children being diagnosed when in a state of DKA.”
The campaign was supported by Tom Gordon, MP for Harrogate and Knaresborough and Chair of the All-Party Parliamentary Group for Diabetes, who backed the call for wider use of point-of-care testing for type 1 diabetes in children during the debate in Parliament.
Importance of recognising 4Ts symptoms
During the debate, Tom highlighted the importance of recognising the key symptoms of type 1 diabetes – known as the “4Ts”: thirst, tiredness, thinning and going to the toilet more frequently – and ensuring quick access to testing when those symptoms appear.
He also called for greater use of simple finger-prick blood glucose tests in primary care, which can quickly identify the condition and help prevent life threatening diabetic ketoacidosis.
Shortly after his election, Mr Gordon reconvened the All-Party Parliamentary Group for Diabetes, a cross-party group of MPs and Peers who campaign on key diabetes issues in Parliament.
Mr Gordon said: “It was a privilege to stand alongside John Story and campaigners today as they handed the Lyla’s Law petition in to Downing Street. John’s tireless campaigning in memory of Lyla is helping drive real change.
“Too many children are still diagnosed with type 1 diabetes only once they are already critically ill. A simple finger-prick test when symptoms appear could prevent life threatening emergencies.
“I remember how frightening it was when my nine-year-old sister collapsed with diabetic ketoacidosis on a family holiday and was rushed to hospital - it’s an experience no family forgets.
“Type 1 diabetes cannot currently be prevented, but deaths from undiagnosed type 1 diabetes are preventable. Improving awareness and access to testing will save lives.”
Josh Newbury, the Labour MP for Cannock Chase, said: “A single finger-prick blood glucose test is cheap and takes seconds.”
John thanked everyone who attended the meeting and who took part in a peaceful demonstration as they handed in the petition, which attracted more than 120,000 signatures, to 10 Downing Street.
Mr Story 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.
“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.”
“Deeply affected”
Sharon Hodgson, newly appointed as parliamentary under-secretary of state in the Department for Health and Social Care, spoke at the debate, saying she had been “deeply affected” by Lyla’s story: “I am not surprised at all that the petition received 120,000 signatures after it was started.
“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.
“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.
“It is truly inspiring, and we hope that it will help to ensure that no other families will suffer as they have.”
NHS England said: “We are carefully considering how staff could be better supported to ensure acute onset type 1 diabetes is recognised and acted upon urgently.”
Before the petition target was reached the government had said it had no plans to introduce routine testing “at the current time”.
However, a Department of Health and Social Care spokesperson said guidelines given to GPs by the National Institute for Health and Care Excellence (NICE) stated that if doctors suspected type 1 diabetes in children and young people, they should be referred immediately to a specialist.
A statement from the Department of Health and Social Care said: “If a life-threatening complication is suspected, they should be transferred immediately to hospital.”
“The beginning of a new era in type 1 diabetes care”
Bethany Kelly, lead community clinical diabetes specialist nurse and member of the DRWF Editorial Advisory Board, said she “welcomed” the positive outcome of the debate: “This confusion highlights the critical need for clearer education on type 1 diabetes: its life threatening urgency, the significance of the 4Ts symptoms, and the absolute requirement for immediate testing when any one of these symptoms is present.
“My hope is that this signals the beginning of a new era in type 1 diabetes care, one in which people are assessed rapidly, safely, and without unnecessary barriers.”
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 last year and we continue to support and promote their efforts which seek to change legislation and improve diagnosis and screening. It is nothing short of incredible how John and Emma have channelled their grief into this campaign for change. This really is Lyla’s legacy.”
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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