Contribution
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.