Mother calls for modernisation of epilepsy care

A grieving mother is attempting to raise £750,000 to improve epilepsy care through technology.

Emma O'Brien, from Gravesend in Kent, is raising funds for Leo's Angels, which she set up in memory of her son who died aged 11 from Sudden Unexpected Death in Epilepsy (SUDEP) in 2023.

She wants to find ways of using technology to improve care for children with epilepsy saying her family had a "horrendous time" due to poor communication between hospitals, and that parts of his treatment were too manual, such as staff relying on a manual seizure diary.

A spokesperson for Evelina London Children's Hospital, where Leo was treated, expressed their sincere condolences to Leo's family for their loss.

"As a hospital, we always try to ensure a child's care is as seamless as possible, particularly when other health providers are involved," they added.

Ms O'Brien said her son "fell through the gaps" of the current system and that no health care professionals were looking after him for about eight or nine months.

"I was climbing the walls trying to get the support he needed," she told BBC Radio Kent.

Leo was diagnosed with epilepsy aged three and his condition worsened, leading to a series of hospital admissions.

Ms O'Brien, who has worked in technology for more than 25 years, told BBC Radio Kent one issue with his care was that they were asked to fill in a manual seizure diary.

"The medical team were having to make quite speedy decisions. But they could only work with the data that they had," she said.

"I used to say to them, 'there's technology out there'," she added, suggesting an app could have been used to digitalise his seizure diary.

Ms O'Brien is now aiming to fund and develop tools to enhance data-driven decision making for clinicians to reduce delays.

"What is clear to me now is the signs of SUDEP were all there, but we missed them," she added.

"Even his medical team seemed surprised when Leo died, but when you look at the data and what Leo was struggling with, it was obvious that was a higher risk."

She added: "If they had technology enabling them to get to those treatment decisions a lot quicker, then the care would be much more proactive, and I honestly believe situations like Leo could be avoided."