Government pledge support to family campaigning in memory of their daughter
The government has reaffirmed their commitment to the Story family in their campaign for Lylas’ Law.
The family of Lyla Story has received a letter from the Department of Health and Social Care updating on various measures they are taking to ensure no other family suffers the same loss they experienced.
Lyla died aged two from complications associated with undiagnosed type 1 diabetes in May 2025.
Lyla’s death (three weeks after celebrating her second birthday) followed an episode of diabetic ketoacidosis (DKA) linked to undiagnosed type 1 diabetes and other complications.
Ever since, Lyla’s father John and family have campaigned tirelessly to highlight the risk for others.
John launched the petition with the UK Parliament for the introduction of legislation to improve diagnosis and introduce screening that has recently been presented to parliament after receiving the required 100,000 signatures and is set to be passed.
In addition, many more recommendations are to be made among healthcare professionals to do more to recognise early signs of type 1 diabetes in young people.
In a recent DRWF Living with Diabetes podcast we talked to John Story to hear about the journey he and his family have been on to help others identify early signs of type 1 diabetes.
Listen to the DRWF podcast interview with John Story, part of the DRWF Living with Diabetes podcast series
In a recent letter to John to update on progress Sharon Hodgson MP, Parliamentary Under-Secretary of State for Public Health and Prevention said: “I want to reiterate my admiration for your tireless and passionate campaign in memory of Lyla. The courage you have shown to campaign so powerfully, at such a time of unimaginable grief, is truly inspiring. It will help ensure no other families suffer as yours has. I would like to reaffirm our commitment to your work.”
Ms Hodgson said that among measures being acted on following the Lyla’s Law campaign would include an update to NICE (National Institute for Health and Care Excellence) NG18 guidance – for Diabetes (type 1 and type 2) in children and young people: diagnosis and management.
Ms Hodgson said: “I am pleased that, because of your campaign and engagement, NICE have already updated the guidance to reflect that a child might present with DKA without an existing diagnosis of type 1 diabetes. Further to your continued engagement, NICE are also convening an independent expert clinical panel with the appropriate specialist knowledge to review the recommendations on identifying type 1 diabetes. My officials will keep me informed of how NICE’s work progresses.”
MS Hodgson added that additional measures were being taken to improve access to equipment for diabetes testing for healthcare professionals: “NICE guidance is not mandatory but designed to be evidence-based advice to inform, rather than replace, clinical judgment, allowing for tailored care for individual patients. However, I agree that more can be done, in particular exploring what role the Care Quality Commission (CQC) can play, as the regulator of quality and safety for health and social care.
“I can confirm that CQC has updated their guidance that GP practices must now have a blood glucose meter, in-date glucometer strips, and lancets to ensure that every surgery in the county has the tools to rapidly assess a patient’s blood sugar levels if they present with symptoms suggestive of type 1 diabetes or indeed DKA. This is now required as part of a list of resuscitation equipment readily available for immediate use.”
Ms Hodgson also advised a national Getting it Right First Time (GIRFT) Children and Young Adults with Diabetes report will be published by NHS England: “The goal of the GIRFT Children and Young Adults with Diabetes programme is to identify issues with existing practise and make recommendations for improvement. This report will look at the reasons behind unwarranted variation in care and make recommendations to support local systems to improve prompt diagnosis of T1D and so to reduce the rates of children presenting in DKA.”
Ms Hodgson concluded: “I hope this letter reassures you of my desire to improve the diagnosis of type 1 diabetes in children and young adults.
“Together with my close friend Dame Diana Johnson MP, I look forward to taking this work further to improve prompt diagnosis of type 1 diabetes in young children, and ensure no other family has to endure the devastating consequences of a missed type 1 diabetes diagnosis.”
In the recent DRWF podcast interview John said: “It is a bit of a personal crusade. I am working with NHS England and prominent members in the field, but I feel that we need to be infiltrating from all angles.”
John said the loss has left he and his wife Emma and son Jack with a “hole in our lives now that can never be replaced”. However, talking regularly about Lyla keeps her memory close.
John said: “Let’s never stop talking about her, because she will always be a part of us. I never thought that this campaign would reach the levels it has. I feel like now Lyla has an extended family.
“Talking about Lyla is draining, but I owe it to Lyla, and I owe it to the community. Both diagnosed, and undiagnosed because if you have not got that awareness out there it is going to happen again. We cannot have any more Lyla’s.”
Listen to the DRWF podcast interview with John Story, part of the DRWF Living with Diabetes podcast series
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
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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