Type 1 Diabetes: Infant Testing

Sharon Hodgson Excerpts

Monday 9th March 2026 Westminster Hall

[The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)]

It is a pleasure to serve under your chairmanship from the Dispatch Box, Sir Alec. I thank my hon. Friend the Member for North Ayrshire and Arran (Irene Campbell) for opening this important debate, following the petition related to funding for infants to receive type 1 diabetes testing and routine care. I am grateful to all hon. Members who have taken part and for all the heartfelt speeches that we have been privileged to hear.

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 diabetic ketoacidosis mere hours after seeing her GP. 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. I am so sorry, and I offer Mr and Mrs Story my deepest sympathies. No child or their family should be let down in this way.

We have started to make improvements to raise awareness, and this debate forms a very important part of that. During World Diabetes Day in November 2025, NHS England made a big push to raise awareness of the four Ts, which, as we have heard today, are the main symptoms of type 1 diabetes: thirst, tiredness, thinning, and an increased need to go to the toilet. This work was channelled via social media and a cascade to clinical networks, as well as by updating the nhs.uk pages to make them clearer. A RightCare toolkit was also published by NHS England, which is designed to support integrated care systems to design, plan and deliver high-quality treatment and care for children with all types of diabetes.

[Victoria Atkins (Louth and Horncastle) (Con)]

I warmly welcome the Minister to her place. I should declare that I was diagnosed with type 1 diabetes at the age of three, so I cannot begin to imagine the pain that Mr and Mrs Story, and other affected families who are in the Public Gallery or watching this debate online, have felt—particularly my constituent Levi, who lost her beloved son Eli at the age of two after five misdiagnoses of viruses and infection. Will the Minister undertake to ensure that future guidance will be drafted to emphasise to clinicians that infections and viruses can be not only a symptom, but sometimes a trigger of type 1 diabetes, so that clinicians will have, we hope, the understanding to avoid the tragic losses that we have heard about today?

[Mrs Hodgson]

I thank the former Secretary of State for Health for her important intervention. I was not aware that she was type 1 diabetic herself, and the case of Levi that she mentioned is so pertinent to what we are discussing. Mr Story has been working with NICE, and that guidance is currently being updated. As the right hon. Member says, it is so important to get that information out there, so that all GPs are brought up to date and know that infections and viruses can be a trigger, so I thank her for that intervention.

The RightCare toolkit that is being brought forward also contains important information for clinicians in setting out what good quality diabetes care looks like for children and includes guidance on timely and accurate diagnosis. However, we recognise that more needs to be done, and that is why NHS England is working on how we can better support NHS staff to diagnose patients as quickly as possible and raise awareness of symptoms for parents and families.

[Tom Gordon]

The Minister is talking about how the toolkit will outline for GPs what good diabetes care looks like. That independent advocacy and scrutiny function often came from Healthwatch, which will be abolished in the changes to the NHS and rolled into DHSC. Can she outline how we will ensure scrutiny of services such as diabetes care, which have the patient voice at their heart?

[Mrs Hodgson]

If I may, I will write to the hon. Member on his important point, rather than giving a possibly unsatisfactory answer off the top of my head.

The NHS is exploring how IT can be better used to support GPs in making more accurate diagnoses. That includes how existing electronic patient record—EPR— systems could be used more effectively to provide prompts for GPs to consider type 1 diabetes when particular symptoms are added. I can update the House that clinical leaders in NHS England are also working with digital diabetes education providers to develop a primary care healthcare professional education module.

While we are working on options to improve type 1 diabetes diagnosis, a requirement for a mandatory finger-prick test for those presenting with possible symptoms of type 1 diabetes is difficult to enact and could not be delivered quickly. I hear the point made by the hon. Member for South Northamptonshire (Sarah Bool) in her excellent speech—many others also made this point—about how all GP practices should have the necessary equipment and finger-prick testing kits, and several hon. Members raised the issue of NHS funding for point-of-contact testing kits. I can reassure them that there is good clinician access to those tests. What we need to do is ensure that their use is at the forefront of clinicians’ minds when the symptoms present, which is exactly what Mr and Mrs Story called for in their petition.

One Member raised the abolition of NHS England. I can reassure Members that, as part of that change process, policy functions will transfer into the Department as appropriate. Clinicians follow clinical guidelines set out by NICE, which are advisory and not mandatory. They are not mandatory because they are designed as evidence-based advice to inform rather than to replace clinical judgment, allowing for tailored care for individual patients. Guidelines cannot cover every unique patient scenario, and clinicians must therefore maintain responsibility for treatment decisions.

[Tom Gordon]

I thank the Minister for being so generous with her time. Before entering this place, I worked for Breakthrough T1D, and one thing that came up all too often was that clinicians did not feel that they had the funding to give people the treatment they needed. The Minister makes the point about giving them independence, but does she acknowledge that if they do not have the funding to do that, the guidance falls at the first hurdle?

[Mrs Hodgson]

That might be a fair point on some treatments more widely, but funding is not an issue for the finger-prick test—it is very affordable for the NHS, and I am told that funding is not the issue on the point we are debating today. I am pleased that NICE has been able to respond very quickly to Mr and Mrs Story. It has engaged with them in detail and listened to their concerns about how the guidance could be clearer.

I am very pleased that NICE has recently said it will update the guidance and guidelines on the diagnosis and management of type 1 and 2 diabetes in children, to raise the prominence of the risk of diabetic ketoacidosis in children with undiagnosed diabetes. I understand that the conversation Mr Story is having with NICE is ongoing, and that NICE is also considering an update to the adult guidance in due course. I know that Mr Story has raised further recommendations with NICE to improve that guidance. I am sure NICE will be considering it very carefully.

I would like again to put on record my admiration for the huge effort and determination of Mr Story in campaigning to raise awareness and advocating for improvements. The updating of NICE guidance is tangible proof of his efforts; his time has not been wasted.

I recognise that the immediate issue raised is point-of-care testing, but I should update the House in saying that, more broadly, we are also funding the delivery of research to develop and test novel approaches for diagnosing type 1 diabetes earlier and more accurately through the NIHR. That includes an investigation of the use of a new home test for type 1 diabetes in children and young people. Studies are also identifying ways to improve the diagnosis of type 1 and 2 diabetes based on genetics, making prediction more accessible and more effective.

We are also supporting the delivery of research into type 1 diabetes treatment, again through the NIHR. That includes supporting a new UK-wide type 1 diabetes cell therapy clinical trials network. The aim is to ensure all people with the condition gain access to the latest cutting-edge treatments as early as possible. The NIHR’s research delivery network is also supporting the delivery of a study that aims to identify infants at risk of developing type 1 diabetes, and to study new treatments with the aim of preventing the development of the condition.

In addition, following the publication of NICE’s guidance recommending the use of hybrid closed loop systems as a treatment option for type 1 diabetes in children, the NHS began a five-year roll-out of HCLs in 2024. For those who are not familiar with that technology, an HCL acts as an artificial pancreas that lets a person’s insulin pump talk to their continuous glucose monitor. I am sure that adults in particular with type 1 diabetes are very aware of HCLs, but the use of HCLs in children under 19 has now increased from 36% in 2023-24 to 70% in 2025-26. That is significant progress in making that life-changing technology available to more children and young people.

Returning to the issue of diagnosis, the NHS is exploring how IT can be better used to support GPs in making more accurate diagnoses. That includes how existing electronic patient record systems could be used more effectively to provide prompts for GPs to consider type 1 diabetes when particular symptoms are added. I can inform the House that clinical leaders in NHS England are working with digital providers of diabetes education to develop an education module for primary care healthcare professionals.

A few Members mentioned screening, so I would like to take this opportunity to set out the Government’s position. Although we know that screening for antibodies would sadly not have helped Lyla, screening tests may help to improve our ability to identify those who are most likely to develop type 1 diabetes in future. We are guided by the independent scientific advice of the UK National Screening Committee, as it is vital that screening programmes are evidence-based and evidence-led. The committee does not currently recommend screening for type 1 diabetes, due to a lack of evidence.

However, the committee received a submission, via its 2024 open-call process, to consider screening for autoimmune type 1 diabetes through blood testing. Once NICE has published its recommendation on the drug teplizumab, which is expected this year, the National Screening Committee will consider whether a fresh review of the evidence for type 1 diabetes screening should be undertaken.

In addition, NHS England is looking carefully to see what further improvements might be made to the red book and to support increased awareness for parents and families so that they can see what the symptoms of type 1 diabetes are. I know that was an important part of the petition.

In closing, I thank all those present for taking part in this very important debate, as well as our constituents—all 120,000 of them—who took the time to sign the petition and press us all on this very important matter. I hope that the work that is currently being taken forward across diagnosis and awareness shows the seriousness with which this issue is being taken.

I am pleased that John and Emma Story will be meeting the Secretary of State for Health tomorrow to discuss this further, along with their constituency MP, my right hon. Friend the Member for Kingston upon Hull North and Cottingham (Dame Diana Johnson), who is here for the debate. I am sure that will be a very emotional and powerful meeting for Mr and Mrs Story. I wish them well and, in closing, pay tribute to them again for everything they have done in Lyla’s name to try to ensure that no other family follows in their footsteps.