Changing the story: Why early detection of type 1 diabetes must become the norm

For some, it is a child who becomes suddenly and dangerously unwell. For others, it is a young adult, a parent, or even a grandparent whose symptoms are missed until they reach crisis point. A rushed trip to hospital. A diagnosis that changes everything. It does not have to be like this.

I hear so many dreadful stories of the panic and crisis that people feel when they are diagnosed late. I’ve spoken to parents who are still haunted by the moment their child was rushed into intensive care, and who carry the guilt of not recognising the signs sooner – even though they couldn’t have known. I’ve met families who were told their child had a virus, only to find themselves hours later facing a diagnosis of type 1 diabetes and the terrifying reality of diabetic ketoacidosis (DKA). Tragically, we also know that not all children survive DKA.

DKA can mean coma, organ failure, a traumatic hospital stay and if it’s not treated quickly it can be fatal. No one should have to experience this – especially when we now have the knowledge and tools to prevent it.

Thanks to research that our supporters have helped us to fund, we now have ways to detect type 1 diabetes before symptoms appear. That means we can give people a safer start to life with the condition. It means fewer children ending up in intensive care. It means more time to prepare, to plan, and to begin life with T1D from a place of knowledge.

At Breakthrough T1D, we believe early detection is one of the most powerful tools we have to change the story of type 1 diabetes. That is why today we are publishing a white paper that sets out the case for a national screening programme and why the time to act is now.

Why have we written a white paper?

A white paper is a report that brings together the facts, the evidence and the expert views on an issue that needs urgent attention. It is written to help people in positions of influence understand the problem and see what needs to change.

Our white paper explains why spotting T1D in its earliest stages is so important. It shows how early detection can save lives, reduce trauma and give people a better chance of living well with type 1 from day one.

It also sets out what needs to happen next. That includes raising awareness, making screening for early detection more widely available and ensuring people can access new treatments.

How can you find T1D before symptoms appear?

Early detection relies on a simple blood test that looks for specific proteins called autoantibodies. These are produced when the immune system mistakenly attacks the insulin-producing cells in the pancreas.

T1D develops in stages. In stage one, a person has multiple autoantibodies but normal blood glucose levels. In stage two, blood glucose levels begin to change. Only in stage three do symptoms appear.

It is a sad truth that currently most will be diagnosed during stage three, and we know that around a quarter of children are only diagnosed when they are experiencing diabetic ketoacidosis (DKA).

But the impact goes beyond the emotional toll. People diagnosed during DKA often find it harder to manage their blood glucose in the long term. They are more likely to experience highs and lows and have a higher average HbA1c. They also need more healthcare support, which increases costs for the NHS.

What difference would a screening programme make?

Studies show that early detection screening can almost eliminate diagnosis during DKA. That means fewer children fighting for their lives in intensive care. Fewer families facing the unthinkable. We know that children can and do die from late diagnosis – and we have the power to stop it. That is why we are calling on the government to introduce a national screening programme for type 1 diabetes.

This call has never been more urgent. Treatments like teplizumab are on the horizon – a breakthrough that could change everything. Teplizumab, which Breakthrough T1D helped to fund, is currently under review by NICE. If approved, it could delay the onset of type 1 diabetes symptoms by up to three years. That’s three more years without insulin. Three more years of freedom from managing the condition. And this is just the beginning. More treatments are coming that could give people even more time before symptoms begin. But early detection is the key that unlocks their potential.