Two teenage girls could have been saved if their families were told their epilepsy was a potential killer, a Dundee sheriff has ruled.
St Andrews University student Erin Casey (19) was found dead in her room in October 2006 and Christina Ilia (15), a Forfar Academy pupil, died in March 2009.
A fatal accident inquiry into their deaths found both tragedies were attributed to SUDEP the sudden, unexpected death of a person who suffers from epilepsy.
In a hard-hitting determination (link to full report) Sheriff Alastair Duff says both families should have been told by their consultant neurologists that their conditions had potentially fatal consequences.
He criticises Dr Martin Zeidler at Kirkcaldy’s Victoria Hospital, who treated Erin, and Dr Martin Kirkpatrick at Ninewells Hospital in Dundee, who was responsible for Christina’s care. Both of the doctors had told the inquiry that warning the patients about the possibility of SUDEP could have had an adverse effect on their quality of life. Both consultants also thought it was too low a risk.
Sheriff Duff reports that he found the evidence of Dr Zeidler “very unacceptable” and describes his attitude as “dogmatic”. He says the consultant had “a position that nothing was sufficiently certain and every answer he gave appeared to him to be framed so as not to dislodge that dogma.”
He adds: “At times he contradicted himself. At times his answers bordered on the flippant or dismissive.”
Both, he says, had dismissed compelling reports and research.
Sheriff Duff also criticises Tayside Police for treating Christina’s home as a “crime scene” after one officer walked in on her distraught mother while she was changing and Mr Ilia was urged to tell her to hurry up. The sheriff calls the approach “grossly insensitive” and calls for it to be reconsidered.
Christina’s parents were overwhelmed and tearful at news of the report’s release her mother saying she was “too scared” to read the findings.
Continued…
Markos Ilia returned home from work to find a message on the phone from his solicitor, saying the sheriff’s recommendations were available. He immediately called partner Lynne Wheeler at the architect firm in Glamis where she works.
“I am asking myself do I really want to read it, because it won’t change anything,” Ms Wheeler said.
Hearing that the sheriff is recommending information should be shared with families, she said that wouldn’t necessarily prevent more young people dying.
She said a similar inquiry in 2002 recommended information be made available about SUDEP.
“At the end of the day if the neurologists had looked at those recommendations, we and lots of other families might not be in this situation now.”
In his judgment, Sheriff Duff recommends the “vast majority” of patients with epilepsy or their parents or carers should be advised of the risk of SUDEP on first diagnosis or, if there are exceptional circumstances, in a short time.
“Advice about the risk of SUDEP should only be withheld if there is assessed to be, in the case of a particular patient, a risk of serious harm to the patient in providing the information, or the patient has learning difficulties,” he reports.
During the inquiry it emerged both sets of parents discovered the term SUDEP after the deaths.