Dundee and Tayside Feed

Inquiry finds that teenagers who died of epilepsy were not told condition could kill them

Erin Casey and Christina Ilia both died after suffering epileptic seizures having never been told of seriousness of condition.

By Mike Farrell

25 August 2011 12:40 GMT

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An inquiry into the deaths of two young epilepsy sufferers has found that “reasonable precautions” that might have prevented them were not taken.

St Andrews University student Erin Casey, 19, died in her bedroom after suffering an epileptic seizure in 2006 six weeks into her first term of studying languages.

A dual fatal accident inquiry was held into the circumstances surrounding Miss Casey’s death and that of 15-year-old Christina Ilia in her home in Forfar, Angus, in 2009.

Inquiry finds that teenagers who died of epilepsy were not told condition could kill them

The inquiry found that both teenagers had died of sudden unexpected death in epilepsy (SUDEP) which has resulted in criticisms being levelled at doctors who did not inform the families of the potentially fatal nature of the condition.

In his findings released on Thursday, Sheriff Alistair Duff also criticised Tayside Police who referred to Miss Ilia’s room as a “crime scene” when they were investigating her death on March 23, 2009.

The sheriff recommended that epilepsy sufferers or their parents should be informed of potential SUDEP, while he also found that the anti-epilepsy medication regime Miss Casey was on was not effectively monitored.

The sheriff also recommended that GP practices should consider monitoring repeat prescriptions for anti-epilepsy medication following the deaths.

Miss Casey had suffered an epileptic seizure while in bed at the family home in Ludin Links, Fife, in March 2006, before she later left to attend university.

After this, she attended consultant neurologist Dr Martin Zeilder at Victoria Hospital in Kirkcaldy where she was put on an anti-epilepsy medication programme.

During the inquiry, Dr Zeilder said Miss Casey was an “intelligent girl” who dismissed “any suggestions she might have had difficulty understanding instructions”.

Medication regime

He also advised her that the condition which would eventually kill her would be a “minor nuisance” in her life.

However, her family later noted that she seemed to be “confused” by the medication programme.

Several months later on October 26, Miss Casey was in her student house in St Andrews, the day before an exam.

She was due to return to the family home in Ludin Links the following day, but after she did not show her father attended the student house where, with one of her flatmates, she was found dead in bed.

A post-mortem examination found that Miss Casey had a level of anti-epilepsy drug carbamazepine in her blood “well below a therapeutic level”.

Her boyfriend Lee McPherson told the inquiry that Miss Casey did “not seem properly to understand how to take her medication” and that as far as he knew she was taking “hardly any medication at all”.

The sheriff found that Mr McPherson felt that the apparent “blasé” attitude of Dr Zeilder had “tainted” her approach to the condition.

In response to the death, and their concerns over the treatment Miss Casey received, her family complained to the NHS Fife board and later to the Scottish Public Services Ombudsman who upheld their complaint.

Sheriff Duff found: “Dr Zeidler had little or no evidential basis beyond one or two anecdotes for concluding that advising about the risk of SUDEP was such a distressing event that the advice was likely to be harmful and should be withheld.

“His concern was not supported by the experience of those who do tell.”

No SUDEP information

In relation to Miss Ilia, Sheriff Duff found that the Forfar Academy pupil had been in bed watching TV on the night of March 22, 2009. The next morning her father Markos went into her room, where he found her dead in bed having suffered an epileptic seizure.

When police eventually advised them that the teenager’s death was related to epilepsy, her parents were taken aback, the sheriff found.

When the parents then confronted Dr Martin Kilpatrick, their doctor’s consultant, about this he told took the view that “the cause of death was unlikely to be SUDEP and he advised the family that they had not been told of the risk because Christina was at low risk and because of the detrimental effect on patients or their families which could result from being given the information.”

Sheriff Duff found that there was “overwhelming” evidence that “intervention” might prevent an epilepsy sufferer from dying due to SUDEP.

Tayside Police were criticised by Miss Ilia’s parents for being made to fell “like criminals” at the time of her death due to the way they addressed them and through referring to her room as a “crime scene”.

Sheriff Duff recommended that Tayside Police and other forces review their practice in relation sudden unexpected deaths, and in particular the practice of officers describing locations as crime scenes.

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