Type 1 Diabetes: Infant Testing

Alec Shelbrooke Excerpts

Monday 9th March 2026 Westminster Hall

[Sir Alec Shelbrooke (in the Chair)]

Order. I welcome members of the public to the Gallery. I know that this is an emotional subject that people care deeply about; I hope that they find today’s debate informative. I remind hon. Members to speak through the Chair. If they wish to speak, they should bob to catch my eye.

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[Sarah Bool]

My hon. Friend is absolutely right that 90% of cases are actually type 2. That is probably also why we fail to understand the true signs of type 1, because there is real confusion and conflation of the two. I think it would actually give clarity if they were named slightly differently.

My hon. Friend is also right that a tsunami of cases of type 2 will be hitting us in the years to come, and we have to do a lot more to raise awareness of that, whether that is about diet or by sharing the technology. Many of us are trying to be visible in wearing the technology and the patches, such as FreeStyle Libre and Dexcom. I think that is very good for removing the stigma and helping people to understand what we need to do in the future. We definitely need to see that tech rolled out for type 2, as well as for type 1. It can still be a bit of a postcode lottery for type 1 at this stage, which is something else that we have to work on.

We must not just rely on some of the jabs that have recently become popular. They are a means of helping people to lose weight, which can be a significant part of type 2 diabetes, but they may not be the answer. There are events going on at the moment, saying that we should exercise some caution and make sure that any jabs that are taken are actually legitimate and proper, and not counterfeit. That is a sad side of this: people are seeking medical treatments that could also be harmful.

To go back to type 1, 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. I am working with medical professionals and charities, including Breakthrough T1D—as it is now called—and Diabetes UK, to look into the Italian model that was mentioned, in the hope that we can one day establish a programme that would catch type 1 before symptoms appear, transforming how we diagnose the condition in the future and helping people to prepare earlier.

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.

In the meantime, I reiterate what the hon. Member for Harrogate and Knaresborough (Tom Gordon) said: we want to see the four Ts built into training and education for all healthcare professionals. The four Ts are very important, but that does not necessarily mean that someone has to have every single one of those symptoms. I did not obviously show the signs of all four Ts, but when I had an HbA1c of 95—[Interruption.] That reaction! To put that into context, a normal person might have an average HbA1c of 20, while the threshold for diabetes is 48; I was at 95 at that stage. My ketones at the point of diagnosis were 2.7. At 3, you are at risk of going into DKA, and anything higher—I understand that Lyla may have been at 6 at the point that she was diagnosed—is critical. Clearly, I was very ill, but I had not picked up on all of those signs; I was not aware. Nevertheless, it is important that we have the four Ts in mind, at least as a baseline.

We also want to make sure that all GP practices actually have the finger-prick test—the glucometer—available. Numerous practices have been contacted and they do not always have that, which I think is quite shocking. As a baseline, we also need to make sure that provision is there.

As John has been campaigning hard for, we want to see the NICE guidelines updated to make sure that this is in the mindset of all our medical practitioners. We also want to see it in the personal child health record—the red book—and within the digital Best Start programme. We the CQC’s role in diagnosing type 1 in primary care to be clarified and strengthened—for example, inspections could assess whether staff receive appropriate training.

We want local commissioners to commit to learning from incidents where type 1 is missed. We want NHS England—or whatever the equivalent is when that is disbanded—to work on this further, and we want the Department of Health and Social Care to review opportunities for national initiatives to drive improvements, such as the Getting It Right First Time programme.

Everyone should rest assured that there are many fantastic representatives in Parliament who are type 1, and we will continue to fly the flag: my right hon. Friend the Member for Louth and Horncastle (Victoria Atkins), who sitting in front of me, is type 1; Mr Speaker is type 1; and, of course, Baroness May in the upper House has been a fantastic advocate over the years. I hope that we can also work with some more celebrity figures, whether that is Nikita on “Strictly Come Dancing”, the actor James Norton, the rugby player Henry Slade or the comedian Ed Gamble. There are figures out there, and we just need to make it much more visible and approachable.

Type 1 diabetes is not a scary condition—although it is a very difficult one, don’t get me wrong. We live with it 24 hours a day, whether we are too hot, too cold, tired, stressed or whatever. From what we are eating to when we are exercising, there is a lot we have to think about, but it is completely manageable with the right support. I want to end my speech with the memory of Lyla and say thank you to John and Emma for their efforts. I say to everyone: please remember those four Ts—“thirst”, “toilet”, “thin” and “tiredness”.

[Sir Alec Shelbrooke (in the Chair)]

Order. I will now set a two-minute limit, because I will be calling the Front-Bench speakers at 7 pm and I am keen to get all colleagues in.

[Lee Pitcher (Doncaster East and the Isle of Axholme) (Lab)]

It is a pleasure to serve under your chairship, Sir Alec. I congratulate the hon. Member for South Northamptonshire (Sarah Bool) on securing time to introduce the ten-minute rule Bill. If she wishes me to be part of her team, I am more than happy to do so.

First, let me express how utterly inspirational it is to see a family who have suffered so much heartache turn that grief into something that should mean no one else ever needs to lose a child in similar circumstances. Knowing about the debate, a parent in my constituency of Doncaster East and the Isle of Axholme shared with me the experience of their child, who became acutely unwell with symptoms that, at first, appeared to be nothing more than a stomach bug. When they arrived at A&E, an astute and brilliant nurse carried out a simple finger-prick test for glucose that showed dangerously high blood glucose levels, and the child was rushed to emergency treatment for DKA.

The family were later told that, without that quick check and the treatment that followed, the outcome could have been far worse. The child spent several days in hospital recovering, and is now beginning to adapt to life with type 1 diabetes. Five months on, I have to say that he is doing exceptionally well. I have met him in the past; he does so much in the community, and he manages his condition like an absolute star.

That account underlines why this issue matters. The early symptoms of type 1 diabetes can look very similar to other common childhood illnesses; vomiting, dehydration and a child becoming increasingly unwell may not immediately point to diabetes, but they could be signs of a serious and fast-moving underlying condition. That is why I ask the Minister to find every way possible to raise awareness of type 1 diabetes through all levels, using all the levers of Government.

I am conscious of time, so I will jump to the fact that we need to ensure that this basic pin-prick test can be used consistently and in a planned way. That reasonable and proportionate step could spare families the trauma of seeing their child become critically unwell before they are diagnosed, or families having to endure the very worst. Around Christmas, I read an article in which Lyla’s dad mentioned that Lyla would definitely have got a sticker—

[Sir Alec Shelbrooke (in the Chair)]

Order.

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[Seamus Logan]

I completely agree with the hon. Member and endorse his suggestion.

This topic is personally important to me, not only because so many family members have been diagnosed with type 1 diabetes but—as the hon. Member for Edinburgh North and Leith (Tracy Gilbert) referred to—because of the premature death in 2022 of my nephew Nick Logan from complications arising from his original diagnosis at the age of 16.

Italy made history in 2023 by becoming the first country to introduce nationwide screening for the early detection of type 1 diabetes in children. In 2021, Scotland also led the way by being the first country to offer C-peptide blood tests to everyone with diabetes to address misdiagnosis. Although that may not be the same as a routine screening programme for type 1 diabetes, it demonstrates how routine testing can be implemented.

Childhood type 1 diabetes rates in the UK are among the highest in the world, ranking fifth globally for children aged 14 and under, according to the International Diabetes Federation. In conclusion, it is essential that the UK Government take a more targeted and strategic approach to improving the care and diagnosis of children and young people showing type 1 diabetes symptoms. That starts with the implementation of routine testing—

[Sir Alec Shelbrooke (in the Chair)]

Order.

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[Laurence Turner (Birmingham Northfield) (Lab)]

Thank you for calling me to speak, Sir Alec. I am grateful to everyone who made the petition and the debate possible. In the short time available, the best service I can provide is to represent just some of the 181 Northfield constituents who signed the petition, in their own words. My constituent Charlotte said:

“As a child, at the age of 10, I was misdiagnosed with a stomach bug by my GP. I was later on that same night in a coma… My parents told my GP that I was showing signs of the 4 Ts—toilet, thirsty, tired and thinness. That same night, I nearly lost my life. The doctors and nurses prepared my parents for the worst, but thank God—I survived the coma, and was blessed to still be alive.”

Sadly, these are not just cases that have occurred in the past. Only a few short years ago, another constituent had to take her young child to accident and emergency. In her words,

“The A&E doctor ran the usual diagnostic tests and said: ‘Go home, continue the penicillin, and let them rest.’ I refused. Something in my gut told me this wasn’t right. The doctor then agreed to do a glucose finger prick test, which showed dangerous blood glucose and ketone levels. If I’d have taken him home that day then they wouldn’t be with us. That haunts me, and I never want another family to live through the trauma that we did.”

I am sorry to my other constituents whose stories I cannot recount in the few minutes available, but the common thread that unites them is some pre-existing awareness of type 1 diabetes. Children’s chances in life should not hang on that probability.

Extensive reference has been made in this debate to the ELSA study, undertaken and led by the University of Birmingham and across the city. The two-year results of that study show that a national screening test programme is feasible, with high levels of acceptance and returns. I warmly welcome the Minister to her place. When she responds, I will be grateful if she can update the House on the process by which the external advisory committee could reconsider the case for a new infant screening programme.

[Sir Alec Shelbrooke (in the Chair)]

I call the Liberal Democrat spokesperson.

[Helen Maguire (Epsom and Ewell) (LD)]

It is an absolute pleasure to serve under your chairship, Sir Alec, and to have the opportunity to debate this incredibly important issue.

As a mum, I cannot begin to imagine the pain of Lyla Story’s family after she died last May from undiagnosed type 1 diabetes, less than 24 hours after a doctor diagnosed her with acute tonsillitis. It is an absolute tragedy that Lyla’s life was cut so short, and it is clear that change must happen. Every child must get the care that they need, when and where they need it. Every child should expect the best possible opportunities to grow up healthy and to exercise, play and eat well.

Charities such as Diabetes UK have been instrumental in raising awareness of the common symptoms known as the four Ts, to which many hon. Members have alluded today: “toilet”, “thirsty”, “tired” and “thinner”. However, children are too often rushed into intensive care and hours later face a diagnosis of type 1 diabetes and diabetic ketoacidosis. DKA can mean a coma, organ failure and a traumatic hospital stay. If it is not treated quickly, it can be fatal.

No child or parent should have to face that terrifying reality when the tools are at our fingertips. NICE guidance is clear: health professionals should know the signs and symptoms of type 1 diabetes, and any child suspected to have the condition should be referred on the same day to a multidisciplinary paediatric diabetes team to confirm the diagnosis and provide immediate care.

The Liberal Democrats believe that early diagnosis of long-term health conditions is essential, offering the best opportunity for those suffering from type 1 diabetes to live healthy, long and fulfilling lives. I welcome the Minister to her place; will she confirm what steps have been taken to ensure that medical professionals are confident in identifying type 1 diabetes in children to avoid a traumatic late diagnosis? Research shows that patients who see the same clinician for most of their care have fewer hospital admissions and lower mortality rates. I therefore implore the Minister to take forward the Liberal Democrat proposal to guarantee a named GP to all those with type 1 diabetes to help improve their long-term care once a diagnosis is achieved.

Another key issue with type 1 diabetes is that we do not know the exact cause of the disease. It is essential that the Government drive research so that we can establish the evidence needed for a viable and effective national screening programme. I urge the National Screening Committee to take on board all new evidence as it emerges, not least from the ongoing study of screening children aged three to 13, which is funded by the National Institute for Health and Care Research.

The Government must also take steps to facilitate medical research in the UK to make progress on paediatric type 1 diabetes testing and other conditions. Will the Minister consult the Chancellor about whether she will consider reversing the employer national insurance contributions hike to support the life sciences sector and boost research and development funding to end this information desert?

The Liberal Democrats are clear that no child should die because of a missed or late diagnosis. The UK needs to be a world leader on research, diagnostics and patient experience. I think of Lyla and the many other children whose lives could have been saved, and I ask the Minister to pay attention to the many calls in this debate to ensure that no family spends a lifetime grieving.

[Sir Alec Shelbrooke (in the Chair)]

I call the shadow Minister.