The mother of Liam Shepherd, an 11-year-old boy from Weston Super Mare who died in his sleep at his home on 23 March 2021, has called for greater awareness of epilepsy within the medical profession to help diagnose others with the condition.
The call comes following a Coroner’s inquest which found that Liam, who suffered from the condition, confirmed the cause of death to be “sudden unexpected death in epilepsy” (SUDEP).
Liam went to Ashcombe Primary school and was due to start Priory Community School in September 2021. Described as a very kind, handsome, thoughtful and caring boy, he raised money for charity and was very popular and academic. He adored animals, was a keen gamer, and was an excellent singer and dancer. He was also a talented sportsman, who loved running and dreamt of becoming a Bristol Bears rugby player when he was older.
Crucially, although Liam had experienced seizures in 2017 and 2020, he had not been seen by an epilepsy specialist and his condition remained undiagnosed until after his death.
Liam’s first seizure happened when he was seven years old after a family holiday. Liam had fallen asleep on the family sofa when his mum witnessed him having a seizure and called an ambulance. The paediatricians that saw him at the Seashore Centre, Weston General Hospital put it down to having a temperature from a virus causing febrile convulsions. However, febrile convulsions only occur to children up to the age of 6, so Liam’s episode should have been recorded as a seizure.
A second nocturnal seizure occurred on the night before Liam’s 10th birthday in February 2020 after Liam had fallen asleep in his mum’s bed after watching a film. Again an ambulance was called, but this time Liam was taken to Bristol’s Children’s Hospital for monitoring. Liam was discharged the following morning and his mum was given a leaflet but this contained no information about monitoring night time seizures. An appointment was supposed to take place within two weeks but it was four months before the Trust saw Liam again.
At the appointment the consultant put the seizure down to Liam having been over-excited about his birthday and told Liam’s mum that seizures can happen to anyone. Miss Shepherd was advised to purchase a baby monitor in order to keep a lookout for any further night-time seizures, even though such a device would not in fact have alerted her to Liam having a seizure, as his seizures were silent. When Miss Shepherd asked the doctor if she should either purchase a video monitor or if Liam should sleep in her bed so she could monitor him during his sleep and be aware of any further seizures, she was advised against both of these things.
The fact that the first seizure was not recorded correctly meant that the consultant that saw Liam on his second visit to hospital was unaware of Liam’s medical history and treated this as an isolated incident.
If Liam’s first seizure had been recorded correctly and he was seen within two weeks, Liam would have been referred to have an EEG (electroencephalogram) test. The result of the test could have helped identify the cause of Liam’s seizures and more guidance would have been given to his family.
In accordance with NICE guidelines, Liam should have been seen by a paediatrician specialising in epilepsy. Crucially, he was never seen and consequently never diagnosed with epilepsy, which otherwise could have been managed.
Liam’s mum sought legal support for the Inquest and to help her get answers about what happened to her son. During the inquest, the Coroner was critical of the medical care that the Trust provided to Liam, particularly in respect of the wrong guidance being given to Miss Shepherd and the fact that he was never seen by a paediatric epilepsy specialist.
Following the inquest, Bristol and Weston’s NHS Trusts Chief Executive sent a letter to Liam’s mum apologising for missed opportunities in Liam’s care and agreeing on a settlement.
Ceri-Ann Taylor, the specialist clinical negligence solicitor at Enable Law that supported Liam’s mum, said ” Liam’s story is heart-breaking. There were opportunities for both treating teams that saw him to recognise his seizures and tell his mum how to monitor him to help keep him safe. If the two Trusts were sharing records and information between them then Liam’s second seizure could have led to a correct diagnosis and he may still have been here this day.”
Kimberley Shepherd, Liam’s mum, concluded: “The NHS let my son down. His life was taken away from him just like that and I feel so sad about everything he is going to miss out on. His dream was to grow up and become a dog handler for the police. My life has been turned upside down, I went from watching my boy growing to become an amazing man whom I was taking to football and rugby five times a week to trying to get through each day.
All of this could have been prevented if Liam was referred for further testing and monitoring. I was made to feel like a neurotic mum when I knew something was wrong and was not listened to.”
The Liam Shepherd Foundation has been set up to raise awareness in SUDC (Sudden Unexplained Death in Childhood) and SUDEP (Sudden Unexpected Death in Epilepsy). The foundation raises money for charities and non-profitable organisations in Liam’s name.
