The tragic story of Helen Leigh

Rotherham woman (25) died from epileptic seizure after being repeatedly told by neurologist she did not have epilepsy

A young woman from Rotherham died aged 25 following an epileptic seizure after having an epilepsy diagnosis wrongly retracted. Helen Leigh, from Maltby, had been under the care of neurologist Professor Markus Reuber 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-epilepsy 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. Miss Leigh first had a seizure in March 2014 aged 21 while visiting her partner Nico 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 Helen 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. Helen was not seen by consultant neurologist Professor Reuber, based at the Royal Hallamshire Hospital in Sheffield, until November 2014. However, at this appointment, Professor Reuber deemed it was obvious that Helen 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, Deborah 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 her mum’s birthday, Helen had three consecutive seizures. Deborah managed to film a 50-second video clip of one seizure which was shown to Professor Reuber. From this, he concluded that Helen 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 Helen 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,” Deborah said. Unlike epilepsy, NEAD isn’t caused by abnormal electrical activity in the brain but rather by mental or emotional processes. It can be triggered by trauma and many people, such as Helen, are referred for psychotherapy to deal with the underlying cause. One in five people diagnosed with epilepsy are then found to have NEAD. Helen 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 Helen back to Professor Reuber but he didn’t reconsider his diagnosis despite the increasing frequency and severity of the seizures. “Professor Reuber only ever seemed to be concerned about Helen’s migraines and even gave her anti-epilepsy medication for those but reiterated that she did not have epilepsy. Helen 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 Professor Reuber’s – nobody checked his decisions and he wasn’t accountable to anyone,” Deborah said. On the day of her fatal seizure, Helen was at home on FaceTime to her boyfriend, Nico, who called Deborah with concerns for Helen’s 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 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 quick. 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.” Helen 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, Professor Reuber wrote to us saying that, ‘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 – that Helen’s death was avoidable.” After this revelation, Mrs Leigh brought a clinical negligence claim against Professor Reuber and Sheffield Teaching Hospitals NHS Trust in her daughter’s estate. She was supported by specialist solicitor, Miriam Bi of Sheffield-based Medical Solicitors. The family alleged that Helen’s treatment on four different occasions had been negligent: that the original correct diagnosis of epilepsy had been reversed; that Professor Reuber failed to appreciate the ongoing seizures with features of epilepsy and perform tests to rule out or confirm; that he failed to make Helen aware that a person could have both epileptic and non-epileptic seizures; and that, on the balance of probabilities, Helen would not have died but for being taken off treatment for epilepsy. Throughout the claim, Professor Reuber 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 Helen’s 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. “Our family hasn’t coped well with Helen’s loss. She’s got two older brothers, Ben and Joel, who she was very close to. Joel is only now, four-and-a-half years later, admitting how badly it affected him. I’m a member of The Compassionate Friends for bereaved parents and there are many of us who have lost children at the hands of the NHS. People make mistakes but they don’t always admit them.”