Gravesend mother calls for modernisation of epilepsy treatment
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 has been set up in memory of her son who died aged 11 from Sudden Unexpected Death in Epilepsy (SUDEP) in 2023.She said the family became "increasingly frustrated" with the manual system, believing he "fell through the gaps".The NHS has been approached for comment.
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 about one experience of being 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'."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."
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