A young woman from Rotherham died aged 25 following an epileptic seizure after having an epilepsy diagnosis wrongly retracted.
She had been under the care of neurologist [redaction made for legal reasons] at Sheffield Teaching Hospitals NHS Trust since November 2014. However, nine months later, based on a 50-second video clip taken by her mother, she was wrongly told she actually had non-epileptic attack disorder (NEAD) and was taken off medication and discharged. She had a fatal seizure while at her home in May 2018 and died in hospital.
She had a seizure in March 2014 aged 21 while visiting her partner in Germany. She was travelling in a van at the time and hit her head on the dashboard. Medics in Germany diagnosed this as a sudden onset tonic-clonic seizure. Before then, she’d had a clean bill of health with no pre-existing conditions.
Back home in the UK, she went to Rotherham Hospital A&E department complaining of severe migraines and photophobia (intolerance to light). Both CT and MRI scans performed came back normal and she was discharged.
Before she was seen by a neurologist at Rotherham Hospital in May 2014, she had another seizure in the A&E entrance which was caught on CCTV and witnessed by nurses on shift. She was taken to resuscitation where it was then suggested she needed an electroencephalogram (EEG) and to begin treatment for her migraines.
She was not seen by consultant neurologist [redaction made for legal reasons] based at the Royal Hallamshire Hospital in Sheffield, until November 2014. However, at this appointment, [name redacted] deemed it was obvious that [name redacted] had epilepsy based on the nature of her seizures. 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 EEG concluded that increased liability to a seizure disorder could not be definitely excluded. She began treatment in the form of anti-epilepsy medication and was referred to the epilepsy nurse team. Her mum said: “she 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 her mum’s birthday, she had three consecutive seizures. Her mum managed to film a 50-second video clip of one seizure which was shown to [name redacted]. From this, he concluded that [name redacted] didn’t have epilepsy, but instead had NEAD, a condition he specialised in.
“We’d never even heard of NEAD before but I was somewhat reassured when I was told that you cannot die from NEAD as the body’s defence mechanism won’t allow it. Not once before she died were we told that you can have both epilepsy and NEAD. Had I known I’d have made her come back home and dragged her if I had to as that changes everything,”
She was taken off epilepsy medication but continued to have seizures, often one or two a month. As she had been discharged from the epilepsy nurse service, her seizures went unreported. On two occasions, her GP referred her back to [name redacted] but he didn’t reconsider his diagnosis despite the increasing frequency and severity of the seizures.
“[Name redacted] only ever seemed to be concerned about her migraines and even gave her anti-epilepsy medication for those but reiterated that she did not have epilepsy. She knew her own mind; she knew it wasn’t NEAD and she really struggled with the psychotherapy. I work in the NHS as a GP practice manager and kicked myself for not getting a second opinion but the decision was totally [name redacted] – nobody checked his decisions and he wasn’t accountable to anyone,”
On the day of her fatal seizure, she was at home on FaceTime to her boyfriend, who called her mum with concerns for her welfare after she disappeared from the screen.
“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. When I got the call from her partner 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 quick. She was on the floor and I knew straight away she was dead. We tried CPR before the paramedics arrived, but they got no response.”
She was taken to Rotherham Hospital where her heart was restarted. The seizure had caused her to aspirate which led to a heart attack. She was intubated before the family had to make the decision to turn off the life support.
“She 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 phlebotomist for a private practice. After her death, [name redacted] wrote to us saying that, ‘In retrospect, she probably had both epileptic and NEAD seizures.’ Well, you can imagine how that went down. I was so angry – and still am – that her death was avoidable.”
After this revelation, her mum brought a clinical negligence claim against [name redacted] and Sheffield Teaching Hospitals NHS Trust.
The family alleged that her treatment on four different occasions had been negligent: that the original correct diagnosis of epilepsy had been reversed; that [name redacted] failed to appreciate the ongoing seizures with features of epilepsy and perform tests to rule out or confirm; that he failed to make her aware that a person could have both epileptic and non-epileptic seizures; and that, on the balance of probabilities, she would not have died but for being taken off treatment for epilepsy.
Throughout the claim, [name redacted] denied liability and justified his decision making based on the information presented to him; a 50-second video clip which contradicted his own research and published papers. The claim settled out of court in September 2022.
“Nobody has ever said sorry for her death as it would mean admitting liability. But there has also been no after-death report or investigation to ensure staff learn from their mistakes. I don’t want other families to go through the same ordeal because they trust what a consultant is saying.”
This is my story as a: Family member
NHS Trust (or Provider): Sheffield Teaching Hospitals NHS Foundation Trust
Timespan: 2018
Did you complain?: Yes
Did the Trust (or Provider) retaliate?: Prefer not to say or N/A
Would you recommend PALS as an impartial intermediary?: No
After investigation, did the Trust (or Provider) respond satisfactorily?: No
Did you take your complaint to the Ombudsman (PHSO)?: No
Your ethnicity: White British
Have you experienced suicidality due to this?: Attempted suicide once
Are you autistic?: No
Are you disabled as defined under the Equality Act 2010?: No
