THE death of teenager Daisy Stephenson in May 2023 raised serious questions about epilepsy care in Jersey.
During her inquest, her parents called 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.
However, six months on, Islanders suffering from epilepsy have said they are continuing to be failed by the Health Department.
From repeated A&E visits, feeling disbelieved, unsupported and at risk, sufferers have spoken about their experiences and a lack of specialist care for the serious, lifelong condition.
With no epilepsy specialist consultant in the Island, patients face long waits, inconsistent treatment and little coordinated support – prompting urgent calls for reform as a long-awaited review of neurological services is due to be published next month.
Family of girl ‘let down’ by Health
After Highlands College student Daisy Stephenson died, aged 17, of sudden death in epilepsy, or SUDEP, her parents called for young epilepsy patients to be issued with seizure alarms.
At Daisy’s inquest, they said they felt “let down” by the Health Department – saying they hadn’t been warned about the risks of SUDEP and that Daisy’s death “could have been avoided”.
The coroner ruled that no medical findings contributed to Daisy’s death – but her family called for several measures that could have helped treat their daughter when her condition was resistant to medication.
For example, a ketogenic diet wasn’t offered locally and children who follow it have to travel to Southampton to be overseen by specialists.
Daisy’s parents remembered her as an “amazing, funny and creative” daughter.
They praised the work of the paediatric epilepsy nurse who supported them, Emma Vibert.
‘Only a matter of time before somebody else loses their life’
Claire Laffoley said she has lived through “an absolutely horrific journey for almost four years” after she had her first seizure. She estimates she has had over 200 seizures now.
Poor care, she said, left her worried that “it’s only going to be a matter of time before somebody else loses their life”.
“From November 2023 to January 2025, I was in A&E every single month because of a seizure or related,” Claire said.
She later requested copies of her medical notes, which have been seen by the JEP, and discovered that doctors and nurses had described her as “a master of pseudo-seizures”.
Another noted: “Keep an eye on this lady as you can’t tell if it’s true or not.”
Pseudo-seizures, she explained, is an outdated term for seizures that are caused by something other than misfiring in the brain, or epilepsy.
If the problem was mental health, she asked, “why didn’t they refer me to the crisis team?”
She said she was finally taken seriously in January 2024 when she was admitted as an inpatient and put on strong anticonvulsant medication – with side effects so strong that she became “erratic, impulsive, paranoid” and tried to hide in the chapel and run away from the Hospital.
“They were still accusing me of it being functional or put on at times. Depending on what nurse or doctor was on duty they would either understand what a functional seizure was, or they would treat me like I was faking.”
Sometimes, she would come around from a seizure in hospital and be alone.
“I’d be dripping with sweat and really distressed and disoriented… Mentally, it was just horrendous,” she said.
The seizures have a significant toll on her body – one taxi driver had to carry Claire home into her flat after she returned from hospital, she said.
Claire said that on occasion she can be left with tears and burns to her skin from seizing on a rough surface, sometimes open bleeding on her hands, feet, knees and face, a high temperature, brain fog, headaches and light sensitivity.
“My recovery is a minimum of one to two days. My body feels like I’ve run a marathon: my whole body hurts, my muscles, my joints, everywhere.
“The worst recovery time for me is a week, and I’m literally stuck on the sofa, I can barely move. I’m practically crawling. I feel like I can’t stand up longer than five minutes.”
A surgery on her shoulder revealed that her cartilage was “completely torn” – which Claire believes happened during a seizure.
Claire, who described herself as normally private to the point of not having many pictures of herself, said she hoped that by sharing her experience she would encourage changes in the provision of epilepsy care in Jersey.
When she was going through seizure after seizure, she found there was no central contact point or charity that could support her.
She said she would like to see leaflets, books or a helpline accessible, with a care co-ordinator to go to with questions.
“[I’d want] A leaflet dedicated to SUDEP and what you can do to prevent it, what is available to prevent it, and another leaflet that explains everything about epilepsy – that it is lifelong, I didn’t know that it was a big shock,” Claire said.
“And the dangers of life threatening side effects of the drugs, the time-sensitivity of the drugs – if you’re an hour or two hours late or if you miss a dose, you are major risk of having an epileptic seizure. None of that is explained to you at all.”
She added: “It’s genuine basic care that we deserve – an acknowledgement of this life-limiting, life-threatening chronic disease that is incurable.”
Alarms
When Claire is at home, a carer visits her for a few hours a day to help her with autism – but she said there had been no way to get financial support for equipment like an alarm or a mat that could sense a nocturnal seizure.
“I was given very mixed messages from multiple people in the hospital. Some people were saying I need 24/7 care until I’m fully titrated and managed medically. I’m waiting for a bed in the top neurology centre in the UK,” she said.
“They need to be sure what my seizures are and what type of epilepsy I have, make sure that the anticonvulsant I’m taking is the right one. I can’t get a bed until June or July at the earliest. I’ve already been waiting over a year for that bed.”
She has got her own alarm on her arm, originally designed to detect falls in elderly people. But the time it would take for it to connect to a telehealth service, an ambulance to be called, and for paramedics to gain access to the flat would take at least half an hour.
There was no funding available for epilepsy alarms, she said.
“We’re being denied life-saving equipment.”
Review
A review into the Island’s neurological services is due to be published next month. It was initiated in 2024 as the result of a “serious incident”, communications revealed at the time.
The review is due to look at the care of people with epilepsy, Parkinson’s disease, and multiple sclerosis, and examine the quality of care, teamwork, treatment pathways and communication in the department.
‘Epilepsy is so different for everyone’
Emily Bownes (26) was diagnosed while she was a nursing student in Southampton. She has since had to give up her studies and career.
She started a Facebook group for those affected by epilepsy in the Island after realising there was nothing like it already.
It now has around 80 members, patients as well as parents of children with epilepsy.
“We’ve built up a rapport with each other – everyone tries to help in any way possible. There is a lot of questions about care and how each person’s care is different. Some people go public, some people go private,” Emily said.
Going private makes appointments come quicker, she said, but didn’t necessarily mean a better outcome.
Though there are neurology staff in the Island, she said, there is no specialist in epilepsy. Patients, who have to undergo a sometimes lengthy trial-and-error process for their medication, have to travel to the UK if they need specialist care.
Emily sees a professor in London, who helped her find the right medication after the ones she was prescribed in Jersey weren’t effective. She also had a five-day EEG in London, which tries to monitor a brain during a seizure to understand where it is coming from.
Having someone in the Island who specialises in epilepsy and MS, she said, would “bring down the waiting time to actually see a consultant and [be] someone that has a better understanding”.
When she was prescribed a wrong medication in the past, she said she was “a completely different person”.
“My mum and dad said that it was like I had the devil inside me,” she revealed.
“Epilepsy is so different for everyone. There’s a medication that I was put on by the professor in London that I’ve never heard of before, never was brought up, and that one’s really helped me.
“They have a better understanding of what medications would work best for focal seizures, tonic, chronic seizures – all that sort of stuff.”
‘It seems a bit jumbled at the moment’
Sophie Reid was diagnosed with a brain tumour after she suffered a seizure at work.
She is now beginning the process of setting up the Sophie Reid Neurological Association, which could present epilepsy sufferers with some hope.
She said the Island had lost out on epilepsy care, with the only consultant neurologist being a locum – which meant there was less consistency for clients.
First Fit clinics, which support patients when they first start experiencing symptoms, had also been cancelled, she said.
“It seems to be a bit jumbled at the moment. We’re hoping that we can raise some awareness around that but we don’t know in what capacity we can do that,” she said.
“We’re trying as an association [to create] education and understand that not all disabilities are visible.”
What the Health Department said?
Simon West, medical director for Health and Care Jersey, said: “While I cannot comment on individual cases, I’m always sorry to hear if a patient is dissatisfied with their care.
“Clinicians at Health and Care Jersey understand the importance of treating all patients with dignity and respect. They are trained to listen to patients and to help support them to make informed decisions about their care. This includes explaining a person’s diagnosis as well as the potential side effects of any medications they prescribe.
“I would urge any patient who has a concern about their care to contact the Patient Advice and Liaison Service (PALS) for confidential advice and support in the first instance.”
The department said support was available through services such as PALS, the UK charity Epilepsy UK, and Telecare which can make emergency alarms available.
