Bill for routine type 1 diabetes testing in children to be presented to parliament

A new bill to introduce routine type 1 diabetes testing for children displaying symptoms will be presented to parliament next month.

MP for South Northamptonshire Sarah Bool will introduce a bill on 14 April to make provision for a universal national programme of screening for type 1 diabetes in children, under the House of Commons’ 10-minute rule.

MP Sarah Bool, who was diagnosed with type 1 diabetes as an adult in 2021, announced the plans during a parliamentary debate on 9 March which centred on a petition for ‘Lyla’s Law’.

The campaign was launched by John Story after his two-year-old daughter, Lyla, died from diabetic ketoacidosis (DKA) on 3 May 2025, 16 hours after being diagnosed with tonsillitis.

Her type 1 diabetes went undiagnosed despite her family saying she had been showing recognised warning signs, including increased thirst, extreme tiredness, weight loss and more frequent wet nappies.

Lyla’s Law calls for the principles set out in NICE Guideline NG18 to be placed on a statutory footing, requiring healthcare professionals to carry out diabetes testing via a finger-prick test whenever a child presents with any of the ‘four Ts’: toileting, thirst, tiredness and thinning.

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It also aims to introduce mandatory testing for type 1 diabetes for infants and toddlers during medical assessments and to include type 1 diabetes information and warning signs in parent’s personal child health record, also known as the red book.

Speaking during the debate, Ms Bool said her world ‘entirely changed’ following her diagnosis at the age of 33 and admitted she did not know the warning signs.

She added that Lyla’s name will ‘go down in history’ and praised her parents for their ‘dedicated work’ in ‘tirelessly campaigning to raise awareness’.

‘I have managed to secure today that I will introduce a 10-minute rule Bill on Tuesday 14 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,’ she said.

‘A lot more research is needed, because the key thing is the age at which someone can be diagnosed.

‘We are working on three potential age ranges at which there would be repeat tests. That is vital and fundamental for the future, to make sure that we do not have one in four children being diagnosed when in a state of DKA.’

Several MPs supported Ms Bool, including MP for Bromley and Biggin Hill Peter Fortune, who added that ‘we need to do more to ensure that those with type 1 diabetes get the support they need’, and Dr Caroline Johnson, MP for Sleaford and North Hykeham, who said the bill will ‘provide leadership on very important questions’.

However, despite the introduction of the bill, concerns have been raised about the rest of the debate, including misunderstandings about the ELSA study which offers risk screening for type 1 diabetes.

Bethany Kelly, lead community clinical diabetes specialist nurse, said: ‘This confusion highlights the critical need for clearer education on Type 1 diabetes: its life‑threatening urgency, the significance of the four T symptoms, and the absolute requirement for immediate testing when any one of these symptoms is present.’

She added: ‘My hope is that this signals the beginning of a new era in Type 1 diabetes care, one in which people are assessed rapidly, safely, and without unnecessary barriers.’

Ms Kelly added that she ‘welcomed’ the debate and its positive outcome.

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Sharon Hodgson, the newly appointed as parliamentary under-secretary of state in the Department for Health and Social Care, also spoke at the debate, saying she had been ‘deeply affected’ by Lyla’s story.

She praised Ms Bool for her speech and hopes that the work being taken forward ‘across diagnosis and awareness shows the seriousness with which this issue is being taken’.

‘I am not surprised at all that the petition received 120,000 signatures after it was started, following – as we know – the tragic death of two-year-old Lyla Story from DKA mere hours after seeing her GP,’ she said.

‘I was deeply affected when I heard that a child so young had been taken so cruelly by a condition as common and manageable as type 1 diabetes.

‘I thank and pay enormous tribute to Lyla’s parents, John and Emma Story, who have campaigned so passionately and powerfully at a time of such unimaginable grief.

‘It is truly inspiring, and we hope that it will help to ensure that no other families will suffer as they have.’

However, she raised concerns about several aims of Lyla’s Law, including the requirement for a mandatory finger-prick test which she described as being ‘difficult to enact’ and something that ‘could not be delivered quickly’.

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She added that NICE are advisory and not mandatory and ‘cannot cover every unique patient scenario’, stating clinicians ‘must therefore maintain responsibility for treatment decisions’.

Ten-Minute Rule Bills are a type of Private Members’ Bill that are introduced in the House of Commons. It allows a backbench MP to make their case for a new bill in a speech lasting up to 10 minutes.

An opposing speech may also be made before the House decides whether the bill should be introduced. If successful, the bill is taken to have had its first reading.