Addressing the challenge of misdiagnosis of type 1 diabetes in young people
We talk to healthcare professionals and parents about the challenges of recognising the signs of type 1 diabetes and how misdiagnosis, with sometimes tragic consequences, could be avoided.
In the latest DRWF podcast, we hear about the tragic consequences of undiagnosed type 1 diabetes, following the death of a young girl earlier this year.
Lyla Story died in May following diabetic ketoacidosis (DKA) linked to undiagnosed type 1 diabetes and other complications. Lyla had just celebrated her second birthday three weeks earlier. Lyla’s father, John Story, talked to us to explain what happened.
Reader caution advised – this is an emotional and frank interview which details the tragic death of Lyla.
This article was produced as part of the DRWF Living with Diabetes podcast series.
DRWF podcast presenter Claire Levy said: “In this edition I am investigating the challenges of diagnosing type 1 diabetes in infants and young people following the tragic death of a girl aged just two, who went into DKA before the autoimmune condition was identified.
These types of deaths are not uncommon among infants and young people in the UK, because the symptoms are often combined with those from other conditions being experienced simultaneously.
“This has led to a call for higher professional awareness in primary care settings, together with a campaign for antibody screening to move from limited clinical studies to become routine in infants as young as two years old.
“We hear about the current status of type 1 diabetes in the UK, together with a tragic case study of the potentially fatal consequences of misdiagnosis, especially in infants, in conversation with Professor Parth Narendran, a reader in diabetes medicine at the University of Birmingham and lead of the Type 1 Diabetes Clinical Service at the Queen Elizabeth Hospital in Birmingham.”
Living with Diabetes: What are the things that parents need to look out for? If their children are showing signs of being poorly, what signs could suggest this might not just be a virus or another childhood illness?
Professor Parth Narendran: “The classic teaching is the 4Ts. Being more thirsty, being more tired, going to the toilet and passing a lot of urine, and losing weight – thin. The real challenge here is that often type 1 diabetes presents when there is something else going on, and people can mistake the illness to be something else and not recognise that there is type 1 diabetes simmering in the background. That is how these acute presentations are missed. The thing is to be aware. Be more open to the diagnosis of type 1 diabetes. It’s a rare condition, but it is really, really important not to miss it.”
Living with Diabetes: For a GP working in a practice, how often would they have a child come in in those circumstances and recognise those symptoms. How often are they diagnosing type 1 diabetes, would you say?
Professor Narendran: “I would say once in a career. A surgery which may have a number of GPs will only have a few people with type 1 diabetes on their books. It is relatively rare. This is the issue.”
John Story: “Lyla was fit, healthy, and she could count well into her 20s. She knew all the nursery rhymes, ‘Twinkle, Twinkle Little Star’ being her favourite. She loved the song ‘Walking in the Air’. She used to love her dad flying her down the stairs while she was singing it. And she was just so fit, energetic and kind. Caring and sharing as well. On 28th April, on the Monday night, we noticed that Lyla started getting a bit sniffly and a bit rosy-cheeked.”
In the days before Lyla became seriously ill, her parents John and Emma noticed her temperature had risen and she had been urinating more than usual. In addition, she had been looking very tired and her nursery teachers also commented that she was not her usual self.
Conscious that something was not right, the parents eventually secured a doctor’s appointment, where tonsillitis was diagnosed and medication prescribed.
"Emma called me to update on the tonsillitis diagnosis and we thought that was a relief.
“In the evening on the way to bed, Lyla started calling out ‘Mummy!’ and we thought that was brilliant, as it meant the drugs were working. Later I went in to see Lyla and gave her a kiss and said, ‘Night night, darling, I love you.’ They were my last words to her.
“In the evening Emma said Lyla was calm and making noises again. We thought it was brilliant that she was articulating.
“Emma woke up about 10pm, and we last checked on her between 1.30am and 2am. I woke up at around 3.45am and when I went to her bed I found Lyla lifeless and colourless. I knew at that point she had already gone. Now I think she passed away only half an hour after my last check on her.
“The paramedics were wonderful. They did all they could. Took her to the hospital, with the blue lights, it was like something off the television. Her official time of death was 5.25am, but we think it was around 2.30am.
“The cause of death was undiagnosed type 1 diabetes, diabetic ketoacidosis, a gastrointestinal bleed and Covid-19. When I had the discussion with the consultant paediatrician, I asked, how on earth, when we were told that she had tonsillitis, that 16 hours later she was dead. What? How on earth could a doctor just think it was tonsillitis when here we are?
“The police were wonderful with us while we were there. When I was giving interviews to the police, even they were crying and they could not believe how a child of two years old, someone so bright and vibrant, had just rapidly declined like that, when all it would have taken would have been a simple dip test of urine or a nappy or the finger prick.” It is a very sad story, which, regrettably, is not uncommon."
Professor Narendran: “For many years we have seen mistakes with misdiagnosis; sometimes, unfortunately, with tragic consequences, and this is not changing. When education programmes have been put in to educate our primary care colleagues, sometimes there is a dip in the acute presentations, but it does not last for long. Some education programmes have not shown a difference. We need something different, so that these critical diagnoses are not missed.”
Living with Diabetes: Can you describe what happens when the patient worsens and goes into DKA. What is happening there?
Professor Narendran: “If the insulin levels fall, then the glucose levels go up. That is the diabetes.
“Diabetic ketoacidosis is an absolute emergency, it needs to be treated immediately with insulin, fluids and electrolytes. And this is an emergency diagnosis; sometimes patients end up in an intensive care unit with these conditions.”
As a result of his experience, John Story is determined to discover how such a tragic misdiagnosis could happen, and to explore what can be done to prevent the same fate affecting more children and their families."
Professor Narendran: “The story of Lyla is absolutely tragic. I have come across these cases so many times and unfortunately it continues. It is so important to educate our primary care colleagues and support them with picking these conditions up early.”
Following the tragic death of Lyla Story, there have been calls for a national screening programme and more stringent regulations for testing when children present with classic symptoms of type 1 diabetes.
Professor Narendran has been involved in the groundbreaking ELSA (early surveillance for autoimmune diabetes) clinical study screening young people for type 1 diabetes.
Professor Narendran: “We are just finishing the study, with up to around 35,000 children consented. I think ELSA is the largest paediatric study in the country and we have recently heard that we have got another four years’ funding to continue with this work. There will be lots more we can do with this extra support, and we are really looking forward to it.
“Going forward, we hope that our answers can help support a case for national screening for type 1 diabetes.”
Since Lyla’s death, John Story launched a petition with the UK Parliament for the introduction of legislation to improve diagnosis and introduce screening.
John needs 100,000 signatures to trigger that debate. But after passing 10,000 signatures, he received an initial government response. The government statement said: “NHS England provides diabetes care in children. Due to insufficient evidence supporting routine mandatory testing for paediatric type 1 diabetes it has no plans to introduce this at the current time.”
John is in the process of organising meetings with politicians to discuss how to introduce the proposed Lyla’s Law in addition to existing NICE guidelines to trigger type 1 diabetes screening if certain symptoms are displayed.
John Story: “More awareness needs to be raised about the 4Ts. If you have got that public awareness, as well as the GP awareness, then there should not be any more cases like Lyla’s.”
At the inquest into Lyla’s death Senior Coroner Professor Paul Marks said he would write a Letter of Concern calling for “a wider approach and education” about the condition, which will be addressed to the Royal College of General Practitioners and the Royal College of Paediatrics and Child Health.
Professor Marks added that the condition “needs to be at the forefront of clinicians’ minds”.
Read more about type 1 diabetes
For more information about the 4Ts, read the DRWF Signs and Symptoms of Diabetes information leaflet here
Read more about the ELSA study here
Listen to the interviews in full as part of the DRWF Living with Diabetes podcast series here
This article was produced as part of the DRWF Living with Diabetes podcast series and appeared in the Autumn 2025 edition of Diabetes Wellness News. To subscribe visit here
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