Family call for support with Lyla’s Law campaign to promote type 1 diabetes testing
The family of Lyla Story are campaigning after their daughter died aged two following diabetic ketoacidosis (DKA) linked to undiagnosed type 1 diabetes and other complications.
The family of a young girl who died after her type 1 diabetes was not correctly diagnosed by healthcare professionals are calling for mandatory testing of young children who could be showing symptoms of the condition.
Lyla Story died in May following diabetic ketoacidosis (DKA) linked to undiagnosed type 1 diabetes and other complications. Lyla had just celebrated her second birthday three weeks earlier.
Her father John Story is now working tirelessly to ensure that other families do not experience the same heartache.
Since Lyla’s death, John Story launched a petition with the UK Parliament for the introduction of legislation to improve diagnosis and introduce screening.
John needs 100,000 signatures to trigger that debate. But after passing 10,000 signatures, he received an initial government response. The government statement said: “NHS England provides diabetes care in children. Due to insufficient evidence supporting routine mandatory testing for paediatric type 1 diabetes it has no plans to introduce this at the current time.”
John said: “The number of missed diagnoses of type 1 diabetes at initial GP contact continues to rise, resulting in thousands of children narrowly avoiding death from diabetic ketoacidosis and more tragically, including our own daughter Lyla, more than ten preventable deaths each year. These are not isolated incidents. They reflect a systemic failure that demands immediate intervention.”
John added: “We urgently call upon your help to urge the Prime Minister and the Health Minister to introduce and legislate Lyla’s Law – a policy that mandates testing for type 1 diabetes in babies, toddlers, children and adolescents as a routine part of medical assessments at the point of care, when displaying any symptoms of the 4Ts (Toileting, Thirst, Tiredness and Thinning), in line with NICE Guidelines.”
Following the tragic death of Lyla Story, there have been calls for a national screening programme and more stringent regulations for testing when children present with classic symptoms of type 1 diabetes.
John said: “Young children are often unable to express or describe their symptoms. It is therefore crucial that GPs take the time to thoroughly assess all presenting signs and symptoms, leaving no room for assumptions.
“Had Lyla’s symptoms been more thoroughly investigated– even a simple urine test could have revealed dangerously elevated levels of ketones. A timely diagnosis would have resulted in an urgent referral, and Lyla would be alive today, managing her condition safely.
“When hospital staff performed blood tests while trying to resuscitate her, Lyla’s HbA1c level was 89 – more than double the normal range (42–43). Her ketone level was 6 – double the threshold of medical danger.
“Our daughter was failed by a system that too often overlooks the signs of type 1 diabetes in very young children.”
Professor Parth Narendran, a reader in diabetes medicine at the University of Birmingham and lead of the Type 1 Diabetes Clinical Service at the Queen Elizabeth Hospital in Birmingham, said: “For many years we have seen mistakes with misdiagnosis; sometimes, unfortunately, with tragic consequences, and this is not changing. When education programmes have been put in to educate our primary care colleagues, sometimes there is a dip in the acute presentations, but it does not last for long. Some education programmes have not shown a difference. We need something different, so that these critical diagnoses are not missed.”
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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