A mother whose daughter died of sudden unexpected death in epilepsy (SUDEP) before even receiving an epilepsy diagnosis, has settled a case against Nottingham University Hospitals NHS Trust, saying she wants “the NHS to learn from what happened”.
Amelia Richardson who had a rare condition from birth called oculocerebrocutaneous syndrome, had been born with fluid in the brain, and had been having seizures, died on 16 September 2020 at the age of 10, from SUDEP. Despite her seizures, she had not been diagnosed with epilepsy or received treatment for the condition.
Amelia had been admitted to hospital on multiple occasions and hospital staff even witnessed her having a seizure.
She had a brain scan days after this seizure which showed no abnormal activity linked to epilepsy, but her family said she continued to have suspected seizures and events where she would become unresponsive.
In December 2019, she was still having these episodes, sometimes as frequently as twice a day when she was ill, but there were no further tests planned for her.
A coroner’s report found that doctors had “missed opportunities to refer her for further investigation”.
The Trust has now admitted breaches in Amelia’s care, accepting that an earlier referral would have led to an epilepsy diagnosis for Amelia. However, it disputes that treatment would have prevented Amelia’s death, saying that treatment would not have eliminated the risk of SUDEP.
However, as part of Amelia’s mum Zoe’s case against the Trust, independent medical experts concluded that Amelia’s death could have been avoided with an earlier diagnosis and appropriate treatment.
The case settled for £32,000, and while Zoe said that “no amount of money will bring my girl back”, she wants lessons to be learned.
She said: “I want the NHS to learn from what happened to Amelia. I don’t want another family to go through what I’ve been through.”
Nottingham Trust failed to follow up on seizure reports
Zoe described Amelia as a “granddad’s girl” who loved singing along to Adele songs in the back of the car on family trips.
“She was such an amazing little girl,” Zoe said. “She loved everybody and touched a lot of people’s hearts.
“If you were having a bad day, Amelia would brighten up your day and make you laugh.”
Amelia’s seizures were continually dismissed as other events, despite the fact that Zoe had witnessed them on many occasions.
“When she wasn’t responding, it was very scary,” she said. “Her legs would make cycling movements, her hands would clench inwards and sometimes her whole body would stiffen.
“No parent should witness what I witnessed.
“We took her to hospital on numerous occasions, but they kept putting the episodes down to viral illnesses or muscle spasms.
“I knew they were seizures, and even her dad was saying it, but they wouldn’t listen.
“They basically told me there were no findings of epilepsy and that was it really. No follow-up. Nothing.”
Amelia had been unwell in the days before she died and had had another seizure. After recovering, she’d had something to eat which Zoe had taken as a sign she was feeling better.
The next morning, she was found unresponsive and attempts to resuscitate her were unsuccessful.
“The fact that they witnessed them and still nothing was done, they let her down,” Zoe said. “She was 10 years old. She still had her whole life ahead of her.”
“She was my world”
Amina Ali, partner and head of clinical negligence at Veritas Solicitors, who represented Zoe, said: “The settlement brings the legal case to an end, but I hope the lessons from what happened to Amelia are not lost.”
Zoe said: “She was my world. I made my baby a promise that I wouldn’t give up until I got justice for her.”
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