Type 1 Diabetes: Infant Testing

Christine Jardine Excerpts

Monday 9th March 2026 Westminster Hall

[Tom Gordon (Harrogate and Knaresborough) (LD)]

It is an honour to serve under your chairship, Sir Alec. I welcome the Minister to her place; the all-party parliamentary group for diabetes had a positive and constructive relationship with her predecessor, the hon. Member for West Lancashire (Ashley Dalton), and I hope that that will continue.

I am grateful to the petitioners and to the petition’s creator, John, who is in the Gallery. He has been tirelessly campaigning in memory of his daughter, Lyla. His courage in speaking out and pushing for change has brought national attention to the urgent need to improve the way we recognise and diagnose type 1 diabetes. Earlier today, a group of cross-party MPs and of health professionals and families handed in a petition to Downing Street on this matter.

About 400,000 people in the UK live with type 1 diabetes. That includes tens of thousands of children. It is most commonly diagnosed in childhood, but can develop at any age. Crucially, it cannot be prevented at the moment and is not linked to lifestyle. There is nothing a child or their parents could have done differently. Despite our understanding of the condition, too many people are still diagnosed only when they are already dangerously ill. Too often, the warning signs are missed.

As we have heard, the classic symptoms are known as the four Ts: thirst, tiredness, thinning, and needing to go to the toilet more frequently. They are well known and simple to check. A quick finger-prick test can measure blood glucose and confirm whether urgent action is needed, but too many families find themselves making repeated visits to healthcare professionals before a diagnosis is made. In many cases, by the time that type 1 diabetes is identified, the patient is already experiencing diabetic ketoacidosis. DKA is a serious and potentially life-threatening condition caused by dangerously high blood glucose levels and the build-up of ketones in the blood. It frequently requires emergency hospital treatment. More than one in four children in the UK diagnosed with type 1 diabetes are diagnosed when already in DKA. This is an issue of health inequalities, too. We know that among children under five, and among those from deprived backgrounds, the proportion can be even higher.

These are not just statistics. Behind every number is a child, a family and a moment of trauma that could all too easily have been avoided. Lyla Story’s case tragically illustrates that. In the days before her death, Lyla showed the classic symptoms of type 1 diabetes. Her parents sought medical help and she was seen by a GP, but the symptoms were attributed to another illness. Her condition deteriorated rapidly, and sadly she passed away after developing diabetic ketoacidosis.

Since I met John months ago, he has sent endless examples of other families across the country. The same story has rung true time and again. This is not just one example; it is emblematic of our current systemic failure. There is an urgent need to improve awareness among healthcare professionals and ensure rapid testing when symptoms appear. They must be tret as a priority. NICE guidelines already state that children suspected of having type 1 diabetes should be referred immediately to a specialist paediatric diabetes team, but we know that, in practice, signs are sometimes missed or not acted on quickly enough. Ensuring that every GP practice has access to relevant glucometers and that the staff are confident about recognising the four Ts is one of the most simple and effective ways we can reduce those missed opportunities. Education and training can make a real difference. At a roundtable held by the APPG for diabetes earlier this year, we heard how quality improvement work in Cardiff has demonstrated that targeted education for primary care teams can significantly reduce emergency diagnoses.

Alongside improving diagnosis, we are entering a new and exciting phase in our understanding of type 1 diabetes, with the possibility of identifying the condition before symptoms even begin. Research has shown that the immune attack that eventually leads to type 1 diabetes produces autoantibodies in the blood long before symptoms appear. Those markers can be detected through screening, and studies such as ELSA have demonstrated that childhood screening is feasible and can identify children at risk before they become unwell.

[Christine Jardine (Edinburgh West) (LD)]

It is a pleasure to serve under your chairship, Sir Alec, for the first time. My hon. Friend has touched on training and the need for awareness. One issue is that very often even people with type 1 diabetes, because of the lack of awareness, are not aware of the symptoms as they begin to react or their insulin is very low. Does he agree that what we also need is a general awareness of type 1 diabetes among the public?

[Tom Gordon]

My hon. Friend is a passionate advocate of diabetes awareness. I completely agree that we need to do more to raise those symptoms with the general public. Everyone knows the key signs of some health conditions—heart attacks or strokes, perhaps—but sadly, type 1 diabetes is not one of those. We can do more in the House to put the issue at the front of the public’s mind; I am optimistic that we can do that across parties, given the diversity of colleagues in this Chamber. Screening offers enormous potential. It will allow families and clinicians to monitor the condition closely, prepare for treatment and, we hope, avoid the trauma of an emergency diagnosis.

I turn to some personal experience. When I was just 13, we were on a family holiday in Turkey. My little sister, who was nine at the time, collapsed by the pool. People do not often think much of it if a growing child loses and gains weight or is thirsty, particularly when abroad in severe heat. My mum had no idea that my sister was a type 1 diabetic; only when she collapsed by the side of a pool and was rushed and blue-lighted to hospital in Turkey did we find out that she was critically unwell and experiencing DKA.

I will never forget that holiday. Fortunately for my sister, everything turned out okay. We got her back to the UK and got her the support that she needed, but it was an incredibly frightening experience for our family and a stark introduction to how suddenly type 1 diabetes can present when it goes undetected. That is one of the reasons why this issue matters deeply to me, and part of the reason why I went on to study biochemistry and a master’s in public health. What can we do? I will turn to what should happen next, but first I encourage any colleagues in the Chamber who are not already members of the APPG for diabetes to join.

I want to press the Minister about a number of areas: first, on awareness of the four Ts, which we have already heard about but needs strengthening across the health system. Training for healthcare professionals, in particular those who work in primary care, should ensure that symptoms of type 1 diabetes are recognised immediately and acted on. Secondly, finger-prick blood-glucose testing should be standard practice whenever a patient presents with symptoms suggestive of type 1 diabetes. NICE guidance should make that expectation explicit, not simply implied.

Thirdly, every GP practice should have the equipment ready to carry out such tests quickly and with confidence. Fourthly, awareness—including of the four Ts—should extend beyond the healthcare system to the personal child health record, or red book, and digital resources for parents, which would help families recognise those warning signs and seek testing earlier. Fifthly, there should be stronger oversight to ensure that learning takes place when diagnoses are missed, including a clearer role for the Care Quality Commission and national improvement initiatives, too. Finally, the NHS should continue to explore what role screening programmes could play in future. Research under way, such as that of the ELSA study, will be crucial in building the evidence needed to support any future national screening programme.

Type 1 diabetes cannot currently be cured, but deaths from undiagnosed type 1 are preventable. Through better awareness, faster testing and continued research, we can ensure that fewer families experience the trauma of delayed diagnosis. If we ended up with a Lyla’s law, we would be honouring the memory of children such as Lyla and the determination of family members such as John, who are campaigning so powerfully for this change.