An artificial-intelligence tool can detect two-thirds of epilepsy brain lesions doctors often miss, say the UK researchers who have developed it, paving the way for more targeted surgery to stop seizures.

One out of every five people with epilepsy – a total of 30,000 in the UK – has uncontrolled seizures caused by brain abnormalities too subtle for the human eye to see on scans.

Child epilepsy experts say the AI tool has “huge potential” and opens up avenues for treatment.

But more studies on the long-term benefits for patients are needed before it can be licensed and used in clinics.

Brain abnormalities called focal cortical dysplasia are a common cause of epilepsy, especially when medication cannot control seizures.

Seizures affect people in different ways – symptoms include jerking and shaking, becoming stiff and losing awareness – and can mean regular visits to accident-and-emergency units.

Removing a small part of the brain can be a safe and effective way of stopping them – but if radiologists cannot see the tiny lesions on brain scans, diagnosis, treatment and surgery can be delayed.

For this study, published in JAMA Neurology, the researchers, from King’s College London and University College London, fed their tool magnetic-resonance-imaging (MRI) scans from more than 1,185 adults and children at 23 hospitals around the world, 703 of whom had brain abnormalities.

The tool, MELD Graph, was able to process the images more quickly than a doctor could – and in more detail – which could mean more timely treatment and fewer costly tests and procedures, lead researcher Dr Konrad Wagstyl said.

The AI would require human oversight, however, and many of the abnormalities were still missed.

“It’s like finding one character on five pages of solid black text,” Dr Wagstyl said.

“AI can find about two-thirds that doctors miss – but a third are still really difficult to find.”

At one hospital in Italy, the tool identified a subtle lesion missed by radiologists, in a 12-year-old boy who had tried nine different medications but still had seizures every day.

Study co-author and childhood epilepsy consultant Prof Helen Cross said it had the potential “to rapidly identify abnormalities that can be removed and potentially cure the epilepsy”.

Uncontrolled epilepsy was “incapacitating”, she said.

Many of the children she sees as a consultant at Great Ormond Street Hospital have had years of seizures and investigations before a lesion is found.

Charity Epilepsy Action said the new AI tool’s potential was “really exciting” and could give people faster diagnosis, but did not solve the issue of lack of specialist epilepsy nurses in England.

“It remains early days and, as always, we must proceed with caution,” said Ley Sander from the Epilepsy Society, adding that if the tool could identify more people as candidates for brain surgery, that could be “life-changing for many more people with epilepsy”.

The researchers are hoping for official approval to use MELD Graph as a diagnostic tool – but other trials are needed first to investigate the long-term benefits for patients whose brain lesions are detected.

In the meantime, the research team has made the tool available on open-source software, so it can be used for clinical research by hospitals worldwide.

“Who will look after our children when we’re no longer here? At the moment that’s nobody.”

Catherine Cox, from Keyworth in Nottinghamshire, was one of thousands of women who took the epilepsy drug, sodium valproate, while pregnant, something which is now advised against.

Her son Matthew, now 23, was born with a range of conditions, including autism, ADHD, epilepsy and several learning disabilities.

At the age of 18 months, he was diagnosed with foetal valproate syndrome, indicating the medication his mother took was the cause of his problems. Mrs Cox has been campaigning for compensation ever since.

It is thought thousands of children in the UK have been left with disabilities caused by valproate since the 1970s.

Instructions for doctors – and, more recently, patient leaflets – say valproate should not be used during pregnancy unless there is no safer alternative and only after a careful discussion of the risks.

Before undergoing fertility treatment, Mrs Cox was advised it was “fine” to continue taking valproate.

“To then find out that the medication that you have taken in good faith has caused the problems your child will carry for the whole of their life is an awful thing,” she told the BBC.

Mr Cox has a job at a local bakery but relies heavily on his mother.

“It can be a struggle at times,” he said. “I do worry at times but I also worry about my mum. Obviously I love my mum.”

Mrs Cox told the BBC she had grown weary of a lack of action from successive governments.

“We’re not getting any younger. I started this when I was 31 – I’m 53 this year,” she said.

“I honestly think that the government want the parents to expire, because the children will not be able to fight for the redress that they need.”

In February 2024, a report by the Patient Safety Commissioner, Henrietta Hughes, said there was a “clear” and “urgent” need to compensate those harmed by valproate, both financially and otherwise.

Dr Hughes made a series of recommendations, including a specific housing grant for valproate victims, a removal of the barriers many face in getting their special educational needs recognised, and work to issue an apology to each individual affected.

More than a year has since passed, and the government is still working on a response.

Mrs Cox said: “We have pulled various governments over time kicking and screaming to this point where they have acknowledged that the difficulties for up to 20,000 children were caused by this drug.

“As we go on, what we need is something to make up for their loss of potential.”

The delays were recently raised at Prime Minister’s Questions by Mrs Cox’s MP, Labour’s James Naish, who represents Rushcliffe.

Sir Keir Starmer responded it was “obviously a really important matter”.

“We will provide an update on the Patient Safety Commissioner’s report at the earliest opportunity to the House,” the prime minister added.

Naish said: “We’re all working hard. The government has a huge amount on its plate. It’s already dealt with big scandals such as the infected blood scandal.

“We just want to make sure that this is one of those issues as well.”

Despite two decades of setbacks, Mrs Cox is hoping she will hear some positive news soon.

“The Labour government were really, really supportive in opposition. Let’s see them stand by their word,” she said.

“As a society we are judged by how we treat our most vulnerable and the children affected by valproate are our most vulnerable. They need that help going forward.”