Clinical Negligence PR – raising awareness of the differences between Epilepsy and Non-Epileptic Attack Disorder (NEAD)

Scala has recently worked with Medical Solicitors and their client, Deborah Leigh, to raise awareness of the differences between Epilepsy and Non-epileptic Attack Disorder (NEAD) following the death of Deborah’s daughter, Helen Leigh, in 2018.

In May 2018, Helen Leigh died of an epileptic seizure aged 25.

Helen, who lived in Rotherham, was diagnosed with epilepsy in November 2014 following a seizure and was prescribed with epilepsy medication to help control her seizures. However, in September 2015, after watching a 50- second video clip of Helen having a seizure, neurologists at the Royal Hallamshire Hospital in Sheffield changed that diagnosis from Epilepsy to Non-Epileptic Attack Disorder (NEAD). NEAD causes attacks that are similar to epilepsy but are not fatal. As a result of this change in diagnosis, Helen was taken off her epilepsy medication, and only a few months later in May 2018, suffered a fatal seizure at home. A neurologist later told Helen’s family that “in retrospect, Helen probably had epileptic and NEAD seizures.”  

Following this disclosure, Helen’s mum Deborah brought a clinical negligence claim against Sheffield Teaching Hospitals NHS Foundation Trust in her daughter’s estate. She was supported by specialist clinical negligence solicitor, Miriam Bi of Sheffield-based law firm, Medical Solicitors. The Trust settled out of court in September 2022, a few months before the case was due for trial.

Helen’s mum, Deborah says, “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, tests, and resulted in her receiving the correct treatment. 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.”   

Scala secured coverage on BBC News, The Independent and Yorkshire Live.