Type 1 Diabetes: Infant Testing

Sarah Bool Excerpts

Monday 9th March 2026 Westminster Hall

[Sarah Bool (South Northamptonshire) (Con)]

It is a pleasure to serve under your chairmanship, Sir Alec. I start by paying tribute to Lyla Story, a little girl whose death, aged two, from undiagnosed type 1 diabetes has brought us here today. I wish I could have been giving her a tour of Parliament rather than talking in this capacity, but her name will go down in the history of Parliament, in Hansard, because of the dedicated work that has been done. I pay tribute to her parents, Emma and John, who are with us in the Gallery and who have campaigned tirelessly to raise awareness of this condition. I commend their courage and determination in the face of such grief. I think they have much greater strength than many of us would have in a similar situation.

If I had been asked about diabetes five years ago, on 9 March 2021, I would probably have said that my auntie had it, and that it was due to poor diet. If I had been asked the same question on 21 May 2021, I would have given a completely different answer. The change is that I was diagnosed as type 1 diabetic at the age of 33. In the space of 24 hours, from going for a blood test for something innocuous, my world entirely changed, and I was rushed into A&E to be given emergency care.

Like many people outside this Chamber, I had little to no knowledge of type 1. The concept of the four Ts—“tiredness”, “thinner”, “thirst” and “toilet”—were unknown to me. The fact that I started losing weight quite quickly was a bonus, I thought. I did not realise what the signs meant. The fact that 400,000 people in the UK have type 1 was news to me, and that more than one in four children with type 1 diabetes are diagnosed when they are in diabetic ketoacidosis was shocking.

What is diabetic ketoacidosis? It has been mentioned a few times today, and it is a complication that develops when the body lacks sufficient insulin, leading to high blood sugar levels and the breakdown of fat and muscle for energy. This produces harmful chemicals, known as ketones, that make the blood acidic, which is what proves fatal.

The petition before us today seeks to make testing for type 1 diabetes in babies, toddlers and young children a routine part of medical assessments at the point of care. John Story is also seeking to have the NICE guidelines on type 1—NG17 for adults and NG18 for children—updated to include performing a finger-prick test on site at the initial GP appointment, with blood glucose tested using a glucometer. That would occur when a child or adult presented with any symptoms consistent with type 1 diabetes. He would like to see a “test, don’t guess” approach, which we have seen be quite effective for meningitis—we know the signs—and sepsis, so I fully support this concept.

NICE has been receptive to making these changes, but ultimately it will be for the relevant NHS commissioning bodies to put the NICE recommendations into practice. We therefore have to look to NHS England and the Department of Health and Social Care to take up this campaign around increased visibility and testing of diabetic ketoacidosis. I echo the question asked by my hon. Friend the Member for Bromley and Biggin Hill (Peter Fortune): with the disbandment of NHS England, what will we be doing in that regard?

[Peter Fortune]

My hon. Friend is making an excellent and passionate speech. I think we all here agree that we need to do more to ensure that those with type 1 diabetes get the support they need. While we are here, does she share my concern that 90% of people diagnosed with diabetes are diagnosed with type 2 diabetes, and the total cost of that care in the UK is about £11 billion? Alongside the important support that we give to those with type 1 diabetes, we should be doing more and taking action to ensure that people do not develop type 2.

[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.