Health Secretary: ‘No child should be let down by the NHS the way Lyla was’
SPECIAL DELIVERY: John and Emma Story, centre, hand in their petition to 10 Downing Street, accompanied by, from left, Sarah Bool MP, Tom Gordon MP, and Dame Diana Johnson MP
By Simon Bristow, Co-Editor
The parents of a two-year-old girl who died from undiagnosed type 1 diabetes have attended a Westminster Hall debate about their campaign to introduce a new law in her memory.
Lyla Story died in her sleep on May 3 last year, just 16 hours after being wrongly diagnosed with tonsillitis by a GP, even though she was presenting symptoms linked to type 1 diabetes, such as a higher number of wet nappies, extreme tiredness and increased thirst.
Lyla’s cause of death was undiagnosed type 1 diabetes, which led to acute diabetic ketoacidosis (DKA) and a gastrointestinal bleed.
Her parents John and Emma Story have since been campaigning 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.
A petition calling for the introduction of the law passed 121,000 signatures in December, triggering a Parliamentary debate.
MEETING: From left, Dame Diana Johnson MP, Emma Story, John Story, and Health Secretary West Streeting
After presenting the petition to No 10 Downing Street, accompanied on their trip to Westminster by their MP, Dame Diana Johnson, the family attended the subsequent debate and held a meeting with Health Secretary Wes Streeting.
Mr Streeting said he was “determined to make real improvements in diagnosing type 1 diabetes” to ensure no child is “let down by the NHS”.
He 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.”
‘DETERMINED TO MAKE IMPROVEMENTS’: Wes Streeting, right, with, from left, Dame Diana Johnson, Emma Story and John Story
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.”
The debate this week was attended by MPs from across the political spectrum.
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.
‘JOYFUL’: Lyla Story
“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.”
Sarah Bool, 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.”
BACKING: Campaign supporters at Westminster Hall
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.”
Dame Diana, Labour MP for Hull North and Cottingham, said: “It was a privilege to accompany my constituents John and Emma Story in Westminster this week – in Downing Street, at the debate in Parliament and at the meeting with the Secretary of State for Health Wes Streeting.
“They have brilliantly highlighted issues around type 1 diabetes that have gone under the radar for far too long. Their dedication to ensuring that other families will not suffer as they have, with the loss of Lyla, is admirable.
“There is still much to do in achieving the changes for which John and Emma are campaigning, but their work is already saving lives by educating the public about the ‘4 Ts’ – thirst, toilet, thinning and tiredness – that are the symptoms of type 1 diabetes.”
Lyla’s Law would also 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.
As part of the campaign, Mr Story is also reaching out to GP surgeries and healthcare settings in the UK asking them to stock blood glucose and ketone urine dip test kits, and display the ‘4 T’s’ Diabetes UK poster.