“Fit and healthy” footballer died of SUDEP, inquest rules

An inquest has ruled that 27-year-old footballer Emily Wilcock died of sudden unexpected death in epilepsy (SUDEP) just days after stopping her medication.

Emily, from Radcliffe, died in the bath on 21 August, 2023, but the inquest ruled that there was “no solid evidence of drowning”.

Her partner James found her and performed CPR but couldn’t revive her.

The Bury Football Club Greens player was diagnosed with epilepsy in 2016 and was taking what the inquest heard had been a ‘minimal dose’ of lamotrigine.

She had spoken to her doctor about coming off the medication, as she had been seven years seizure free and she and James wanted to start a family. Her doctor advised that her medication dose was so low that she could just stop taking it, instead of weaning off. She died days after stopping her medication.

The inquest, held on 28 July, heard from Emily’s family. Her sister, Sophie Wilcock, described Emily as “loving”, “very protective” and “very willing to speak out”. She said she had liked to keep herself fit and healthy.

Emily had had two seizures in 2016, before she was diagnosed with epilepsy. One was while sunbathing in the summer, when her twin brother had found her, and one had happened in September, when she woke up fully clothed and feeling “very strange”.

According to Dr Nazar Shafar, a consultant neurologist who looked after Emily until 2021, she had been seizure free on a very small dose of lamotrigine. However, her mum Jayne said that Emily still had blackouts and fainting, which Emily’s GP had said were fainting and not seizures.

Missed and loved

Tom Shillito, health improvement and research manager at Epilepsy Action, said: “We were saddened to hear about the tragic circumstances surrounding Emily’s death and the struggles she faced while living with epilepsy.

“Her story highlights the many challenges we know people with epilepsy face – not just in getting an accurate diagnosis but also the impact that long-waiting times and lack of access to epilepsy specialists can have in helping them to manage their condition safely.

“There are many things people wanting to conceive need to consider when coming off certain medications and many healthcare professionals don’t always have the full knowledge to be able to support this safely.

“We also know that there still aren’t enough conversations happening among clinicians with their patients about SUDEP, so families are aware of the risks and feel empowered to take the appropriate steps to manage them.

“If anyone has been affected by any of the issues raised in Emily’s story and wants to find out more about how they can get support with their epilepsy, please find out more at epilepsy.org.uk or call our helpline on 0808 800 5050.”

Senior coroner, Joanne Kearsley, said: “She had at least one seizure, so, on balance, I would accept a diagnosis of epilepsy is what pushes it through to be SUDEP, as well as the timing of events, given that she was a week off her medications.”

Addressing the family, she added: “I can see from you and the others behind you how missed and loved Emily was. I take it from what you’ve said today that there’s a million and one good things you could tell me about her.”

Bury Football Club paid tribute to Emily in 2023 with a post on its website, saying: “Everyone who knew Emily will know she was such a lovely person with a great personality and always had a big smile on her face. She will be solely missed for all these reasons.”