Introducing a new bill to improve early screening for type 1 diabetes in children presented to Parliament
Lyla’s Law bill to offer routine type 1 diabetes testing for children displaying symptoms will be presented to reduce risk of missed diagnosis.
MPs have heard the first reading of a new bill for type 1 diabetes screening in children at Parliament.
The reading of the bill followed a recent 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 Lyla Story who died aged two from complications associated with undiagnosed type 1 diabetes campaigned tirelessly to highlight risk for others.
Lyla 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.
The bill was presented by Sarah Bool MP for South Northamptonshire, who was diagnosed with type 1 diabetes five years ago at the age of 33.
Ms Bool said: “I beg to move, that leave be given to bring in a Bill to make provision for a national programme of screening for type 1 diabetes in children; and for connected purposes.
“We have all just returned from the Easter recess, and I am sure that, given the number of chocolate eggs that have been consumed, many people will have been told, “Not too much chocolate, or you will get diabetes.” While they are made in jest, comments of that kind reinforce the problem caused by the misunderstanding of diabetes. About 350,000 people in the UK – including me – currently live with type 1 diabetes, and 85% of type 1 diagnoses occur in people, such as me, with no known family connection with it.”
What is type 1 diabetes?
Ms Bool went on to describe to Parliament more about the condition: “Type 1 diabetes is an autoimmune condition whereby one’s body, mainly one’s pancreas, no longer makes insulin. Without insulin, the body cannot use glucose for food and thus for energy. When people with type 1 diabetes eat, the glucose from their food stays in their bloodstream, but then their body seeks to burn energy and finds an alternative source, namely muscle or fat. The by-products of that are ketones, which are acidic and poison the body. Left untreated, people can enter a state of DKA – diabetic ketoacidosis – which can prove fatal and sadly has done so in some cases. A patient has done nothing to cause type 1; likewise, there is no cure, just management and treatment of the condition. It is essential that we all recognise the signs of type 1. Although the four Ts – thirst, toilet, tiredness and thinning – are a crucial tool, ultimately these are signs that the condition has progressed and is under way.
“Although it is difficult to give a precise number, a study found that about 38% of those newly diagnosed between 2015 to 2020 were in a state of diabetic ketoacidosis, and 44% of them were under five years old. No one should underestimate how traumatic it is to be diagnosed, let alone when someone is in a state of DKA, which requires hospitalisation and emergency treatment. A US study found that being diagnosed while presenting with DKA was associated with significantly greater use of health services and potentially greater healthcare costs in the long term.
“Armed with that knowledge, it is clear that we should aim to identify the condition before people become symptomatic. That would mean that individuals are given an opportunity to get on to a trial to delay the disease, which is a point I will come back to. Furthermore, early identification gives families the time to prepare emotionally and learn how to manage the condition – hence my call today for a national screening programme for children.”
Importance for early screening
Ms Bool added: “Currently, there is no comprehensive NHS screening to identify individuals in the early stages of type 1, despite compelling evidence for it. International programmes, such as those in Germany, Italy, Australia and the US, demonstrate that comprehensive screening, paired with public awareness campaigns and psychological support, can successfully reduce DKA rates and improve long-term health outcomes. As I mentioned, there is also a pipeline of disease-modifying drugs emerging, which means that future generations identified as having markers for type 1 diabetes will be able to delay its development. Teplizumab – a tricky name to say – is one such drug that can, in at least half of people, delay the onset of diabetes by about two to three years. Designed for individuals aged eight years and over who have stage 2 type 1, it works by disabling the immune cells that attack the pancreas and destroy the insulin-producing beta cells, allowing the body to maintain its own insulin production for longer, so early identification is really important.
“Currently, we are looking at the appropriate ages at which to carry out the testing. Although there are numerous opportunities for screening throughout a person’s lifetime, the early years are critical, given the possibility of becoming symptomatic in childhood. If we were to screen children at the age of three to four, we might catch 40% of cases. However, three periods of testing between the ages of two to four, six to eight and 10 to 15 would increase the number of childhood type 1 cases caught to around 80%, which would ultimately improve the efficacy of the screening and help meet the criteria.
“For all the reasons I have set out, I am calling for a national screening programme. Although type 1 is an unpredictable and relentless condition to live with, I hope that within the next few years we can make the diagnosis of this condition far less traumatic, and give families and patients the skills and tools to live with type 1. I hope that one day we can cure this condition. Until then, if we can diagnose earlier and delay the onset to allow more care-free childhood years, we might just make people’s journey with type 1 that little bit better.”
A second reading of the bill is scheduled for 8th May.
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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