THE parents of a teenager who died suddenly in her sleep after years of living with epilepsy have said they are “disgusted and ashamed” by the care she received from Jersey’s hospital – and are calling for changes to how the condition is managed in the Island.
Daisy Stephenson died at home on 19 May 2023, aged 17.
That day, she had attended college in the morning and visited St Ouen’s Bay in the afternoon with her support worker. She went to bed that evening and never woke up.
The 17-year-old had a rare and drug-resistant form of epilepsy, and her parents said her seizures had become more frequent at night in the months before her death.
A week-long inquest into her death began yesterday at Morier House to determine how she died and whether any lessons can be learned.
Her parents, Warren and Claire Stephenson, told the hearing that her condition was poorly managed and that her death “could’ve been avoided”.
In a written statement read to the hearing, they said: “The illness was not managed correctly by the hospital. We are disgusted and ashamed. The hospital let her down.”
The Stephenson family are now calling for seizure alarms to be routinely offered to families where children have night-time seizures; for a support group to be set up for families affected by epilepsy; and for a pathway to be created so that children in Jersey can access the ketogenic diet for epilepsy treatment without having to travel off-Island.
They also said the risk of Sudden Unexpected Death in Epilepsy (SUDEP) – which is more likely in people with uncontrolled seizures – had not been properly explained to them throughout Daisy’s care and believe that more open discussions should be held with patients going forward.
Daisy developed epilepsy at the age of nine and tried around a dozen different medications.
She was under the care of clinicians in Jersey, Southampton, and Great Ormond Street Hospital in London.
Surgical options were considered when she was 16, but these were ruled out because of the risks and uncertainty over whether they would work.
Her parents said her seizures became more severe and increasingly occurred while she was asleep.
While the risks of SUDEP and the option of seizure alarms were raised in medical appointments in 2023 – towards the end of Daisy’s life – her parents told the inquest they were never offered an alarm or made aware that funding for one might be available through charitable organisations.
In their statement, Daisy’s parents also spoke about how her epilepsy affected every part of her life.
She struggled at school, was socially isolated, and had distressing experiences with peers who didn’t understand what she was going through.
“Everything we did had to be arranged around Daisy’s seizures,” her parents wrote.
Giving evidence, Dr David Lawrenson, Daisy’s consultant paediatrician from 2019, said her epilepsy was complex and resistant to medication.
He explained that around 70% of patients see improvement with first or second-line medications – but once those fail, as it did with Daisy, the chances of seizure control drop sharply.
“It was beyond the point where I could offer any learned opinions,” he said, describing her later treatment as “educated trial and error”.
He confirmed her medication changed frequently, with varying doses, and said coordinating her care across three locations came with challenges due to differences in opinion and processes.
He said: “There will always be challenges with that type of work, where you have three experts in paediatric epilepsy trying to provide care for one patient.”
Dr Lawrenson confirmed that the Keto diet, a high-fat, low-carbohydrate diet sometimes used to treat drug-resistant epilepsy, had been considered – but there was no pathway to provide it in Jersey.
He said the diet requires specialist oversight from a neurologist and dietitian and is typically delivered through tertiary off-Island services.
The Stephenson family said they were told Daisy would have to go to Southampton to access the highly specialised treatment – which was difficult due to the frequency of her seizures and the lack of financial support for transport.
The inquest also heard that Jersey has only one epilepsy nurse – a role created in 2022 following an audit.
Dr Lawrenson said she had helped fill gaps in communication but confirmed there is still no formal epilepsy support group for local families.
The consultant paediatrician also said seizure alarms are not routinely offered because they can produce false alarms – which can be very distressing – and have limited evidence behind them.
He described the current detection systems – which rely on sound and movement – as “crude”, and said views among professionals differ.
Some believe alarms may help detect prolonged seizures that go unnoticed at night, which can be linked to SUDEP, while others question whether they are reliable.
Daisy’s uncle, who was also present at the hearing, asked whether enough was being done to protect children who have seizures in their sleep.
Dr Lawrenson said SUDEP was rare but that conversations with families about the risk – and about the option of using alarms – are now happening more regularly.
Giving evidence via video link, Professor Helen Cross from Great Ormond Street Hospital – who was involved in assessing surgical options in Daisy’s case – reiterated the point that seizure management becomes much harder after multiple medications fail, which makes providing care increasingly complex.
She told the inquest that alarms are not prescribed routinely on the NHS and are mostly sold by private companies.
“We have not had a study to say ‘use of alarms prevents SUDEP, ’” she said.
“It is difficult to say whether it would’ve provided an opportunity to prevent Daisy’s death.”
She also spoke about the Keto diet and how it might help some children with ongoing seizures.
Figures provided to the inquest by the Health Department confirmed there are currently 55 children with epilepsy in Jersey, with around 38 receiving regular oversight from a visiting specialist.
Professor Cross said that of those 38, she would expect 10 to 15 to potentially benefit from the Keto diet – for which there is no pathway in Jersey.
She described the diet as “very restrictive” and “a complete change in lifestyle”, particularly for teenagers.
The inquest is due to continue today.
