A mother whose daughter died from an epileptic seizure following a change in diagnosis is aiming to raise awareness of a little-known condition that she claims she was told her daughter could not die from.
Helen Leigh was 25 when she died in May 2018 after an epileptic seizure, two years after an epilepsy diagnosis was changed to Non-Epileptic Attack Disorder (NEAD).
Her mother, Deborah Leigh, is aiming to raise awareness of the condition so other families do not face a similar tragedy.
Mrs Leigh said: “She [Helen] was so very independent and the day she died she’d just got the car she’d always wanted and found out she’d been offered a job as a phlebotomist for a private practice.
“After her death, the neurologist wrote to us saying ‘In retrospect, Helen probably had both epileptic and NEAD seizures.’
“Well, you can imagine how that went down. I was so angry – and still am. I think Helen’s death was avoidable.”
Helen, from Rotherham, South Yorkshire, was diagnosed with epilepsy in November 2014 after suffering her first seizure the previous March.
She was treated with anti-epilepsy medication and went eight months without a seizure.
Mrs Leigh said: “Helen wasn’t happy about the diagnosis and medication, but what 21-year-old would be?
“The medication seemed to work and she went eight months without a seizure.
“Then her medication was changed and she had every side effect going.
“She was prescribed her old medication but it was titrated, starting at a lower dosage to see how it affected the seizures.”
In September 2015, on Mrs Leigh’s birthday, Helen had three seizures, one of which was filmed by her mother and shown to the neurology team at the Royal Hallamshire Hospital.
The video led to a re-evaluation of Helen’s diagnosis, from epilepsy to NEAD.
By sharing Helen’s story, I hope we can raise awareness that will empower families to question those treating their loved one’s condition so that they don’t have to go through what we have— Deborah Leigh
According to the Sheffield Teaching Hospitals NHS Foundation Trust, NEAD attacks are “a type of seizure” which can “look similar to epileptic seizures or fainting spells, but it is not caused by abnormal electric discharges or blood pressure”.
The trust’s website said: “Non-epileptic attacks happen when the brain can’t handle particular thoughts, memories, emotions or sensations.
“They can also sometimes relate to stress or a previous experience of trauma, ie something outside your control which feels too hard to bear.”
Mrs Leigh said she had never heard of the condition but claimed she was told by doctors that people cannot die from it.
The trust says that one in four people who are diagnosed with epilepsy are found to have NEAD, which can be treated through psychotherapy.
As a result, Mrs Leigh said Helen was taken off medication despite seizures still occurring once or twice a month, many of which went unreported.
In May 2018, Helen had a fatal seizure while home alone but on FaceTime with her boyfriend, Nico. He called Mrs Leigh after becoming concerned when Helen disappeared from the screen.
Mrs Leigh said: “She had all the typical signs of epileptic seizures such as loss of consciousness, biting her tongue, no memory of her seizures, and seizures while sleeping.
“The frequency and severity of her seizures were increasing over time, and this was reported to the neurologist who repeated that Helen did not have epilepsy.
“She’d not wanted to move back home as she liked her own space but she did move closer to us, and her best friend lived four doors down so she would check in on her.
Helen’s family are understandably devastated by her loss, and we have offered to have a meeting at any point they feel is appropriate to answer any further questions they may have— Dr Jennifer Hill, Sheffield Teaching Hospitals NHS trust
“When I got the call from Nico I thought, ‘here we go again’. But as I got to her street and was parking the car I could hear her best friend screaming, telling me to get in there quickly.
“Helen was on the floor and I knew straight away she was dead. We tried CPR before the paramedics arrived, but they got no response.”
Mrs Leigh, a GP practice manager, settled a clinical negligence claim with Sheffield Teaching Hospitals NHS Foundation Trust in September last year, in which the trust did not accept liability, and said she regrets not getting a second opinion.
Mrs Leigh said: “Not once before Helen died were we told that you can have both epilepsy and NEAD.
“Had we known this, we would have been able to have different conversations with those treating her, which could have meant further investigations and tests, and resulted in her receiving the correct treatment.”
Dr Jennifer Hill, medical director at Sheffield Teaching Hospitals NHS Foundation Trust, said: “Helen had several investigations during her care and treatment decisions were based on these and other information provided to the clinical team.
“Changes to her care were only made after discussion with Helen and careful consideration by specialists in seizure disorders.
“Helen’s family are understandably devastated by her loss, and we have offered to have a meeting at any point they feel is appropriate to answer any further questions they may have.”
