Type 1 Diabetes: Infant Testing

Luke Akehurst Excerpts

Monday 9th March 2026 Westminster Hall

[Irene Campbell (North Ayrshire and Arran) (Lab)]

I beg to move,

That this House has considered e-petition 728677 relating to type 1 diabetes testing for infants.

It is a pleasure to serve under your chairmanship, Sir Alec. I thank the petitioner, Mr John Story, for starting the petition and telling us the devastating story of what happened to his daughter Lyla, who tragically died when the warning signs of type 1 diabetes were missed. I also congratulate him on gathering over 120,000 signatures from across the United Kingdom on a topic that I know is incredibly important to him and many others: in my North Ayrshire and Arran constituency, there were 204 signatures.

The petition, which is called “Funding so all infants are offered Type 1 Diabetes Testing in routine care”, states:

“Fund 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.”

The petitioner met me to further explain the intent of the petition, which includes legislating so that National Institute for Health and Care Excellence guidelines 18 and 17 ensure that type 1 diabetes testing is carried out when any symptoms appear, and including information on type 1 diabetes in the red book for babies. His campaign for Lyla’s law also asks for public awareness campaigns, to help parents to recognise the signs of type 1 diabetes, and for increased accountability in primary care. The aims of the proposed law include the introduction of a “test, don’t guess” framework to guarantee timely access to care and resources and stop children reaching the point of life-threatening DKA, diabetic ketoacidosis.

The red book for babies is a personal child health record of information such as weight, height, vaccinations and necessary medicines. There is also a newborn blood spot test offered by the NHS, which tests for 10 rare conditions but not for type 1 diabetes. NICE provides guidelines and quality standards for the treatment of type 1 diabetes, and general practitioners are expected to follow the advice in those guidelines. However, it is important to note that they are not legally binding—a point that the petition addresses.

Guideline 18 provides guidelines on type 1 and type 2 diabetes for the diagnosis, treatment and care of children and young people, while guideline 17 provides the guidelines for adults. Guideline 18 states that clinicians should be aware of the signs of type 1 diabetes, and that children and young people who are suspected to have it should be referred immediately to confirm the diagnosis and provide any necessary emergency care. The petitioner’s ask is to ensure that every parent, health visitor and doctor understands that excessive thirst, frequent urination, unexplained weight loss and fatigue are not just a bug or a virus; they could be type 1 diabetes.

There is currently no national screening programme for type 1 diabetes. However, it is important to highlight an ongoing diabetes screening study called ELSA: early surveillance of autoimmune diabetes. While preparing for the debate, I met Professor Parth Narendran, a professor of diabetes medicine and consultant at the University of Birmingham, who leads the ELSA study. A University of Birmingham article states:

“Currently, over a quarter of children aren’t diagnosed with type 1 diabetes until they are in diabetic ketoacidosis (DKA), a potentially fatal condition that requires urgent hospital treatment.”

The hope of the study is that screening children for antibodies could reduce those emergency diagnoses. After a similar pilot programme in Lombardy, Italy became the first country in the world to mandate national screening for type 1 diabetes in children.

The Government response to the petition addresses screening by saying:

“The UK National Screening Committee advises the NHS on screening programmes and, in 2019 concluded that more research and evidence for the benefits of screening for autoimmune type 1 diabetes was required.”

On the ELSA study, the response advises that

“NHS England is working closely with researchers…to ensure that emerging evidence is considered in the development of future national guidance”

on type 1 diabetes screening programmes. It also refers to NHS England’s close work with Diabetes UK, which is leading a “four Ts” campaign to raise awareness of the signs of type 1 diabetes.

[Luke Akehurst (North Durham) (Lab)]

It is a pleasure to serve under your chairship, Sir Alec. Does my hon. Friend agree that the ELSA study proves the need for wider screening, because of the 17,000 children screened, seven were already living with undiagnosed type 1 diabetes severe enough to require immediate treatment and a further 160 had early-stage type 1 diabetes? The study results from Birmingham show that screening needs to be rolled out across the country to save lives.

[Irene Campbell]

I agree with the points that my hon. Friend raises. The research and emerging information from the ELSA study should be considered as soon as possible.

In Diabetes UK’s campaign, the four Ts stand for “toilet”, “thirsty”, “tired” and “thinner”. Recognising those symptoms is key to the campaign.

In preparation for this debate, I met representatives of the Royal College of General Practitioners, who advised me that after hearing Lyla’s story, they urgently reviewed their curriculum and made sure that their continuing professional development resources adequately covered type 1 diabetes symptoms in children and followed NICE guidelines. They also said that they are working with NHS England colleagues on the availability and use of point-of-care capillary blood testing for type 1 diabetes. That is a rapid finger-prick glucose test.