Wes Streeting: ‘No child should be let down by the NHS the way Lyla was’
L-R: Dame Diana Johnson MP, Emma Story, John Story, Wes Streeting MP(Image: Office of Diana Johnson)
The Government‘s Health Secretary, Wes Streeting, has met with the parents of Lyla Story, a two-year-old girl from Hull who sadly died from undiagnosed Type 1 diabetes last year. Mr Streeting has said work is ongoing to ensure “Lyla’s lasting legacy is one that saves lives.”
Lyla’s parents, John and Emma Story, are campaigning for every child with symptoms of the condition to be given a simple, potentially, life-saving test. Lyla’s Law would make routine diabetes testing mandatory for babies, toddlers, children, and adolescents whenever any of the ‘4 Ts’ appear:
- Toileting
- Thirst
- Tiredness
- Thinning
The campaign comes after the NHS missed the signs when Lyla 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 Emma reporting concerning symptoms at the face-to-face appointment.
Mr Streeting pledged to meet with John while speaking on BBC Radio Humberside in January. After their meeting this week, 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 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.
“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. That’s 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.”
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.
The day before Lyla’s father met Mr Streeting, the petition was debated in Parliament after having surpassed 121,000 signatures. During the debate MPs shared a range of real life cases, highlighting the urgent need for earlier diagnosis of type 1 diabetes in children.
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During the debate, Sarah Bool MP (Conservative – South Northamptonshire) announced she will be introducing a 10-minute rule Bill in 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.” The MP added: “We also want to make sure that all GP practices actually have the finger-prick test—the glucometer—available. Numerous practices have been contacted and they do not always have that, which I think is quite shocking. As a baseline, we also need to make sure that provision is there.”
Following the debate 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.
The Hull North and Cottingham MP, Dame Diana Johnson, also attended the meeting and debate. She 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’.”
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