Sudden death warning ‘may have saved epilepsy girls’

Sheriff Alistair Duff yesterday criticised claims by their doctors that warning the teenagers or their parents about Sudep would have caused “inappropriate distress”.

Erin’s parents, Graeme and Janet Casey, welcomed the sheriff’s recommendations and said epilepsy patients needed “doctors, not father figures”.

They added: “We trust the sheriff’s findings will help put an end to the dangerous practice of withholding information in the name of paternalism.

“We would like to dedicate this inquiry to Erin and Christina and to the thousands of people who have died in ignorance of Sudep and of the precautions they or their families could have taken to reduce their risk of death.”

Sudep refers to the sudden death of an epilepsy patient, usually during sleep and most often following a seizure. Seizures can be brought on by a variety of factors, including skipping medication, alcohol or stress.

The inquiry heard how Erin, from Lunden Links in Fife, was found dead at her halls of residence on October 27, 2006, at St Andrews University. She had been diagnosed with epilepsy seven months before her death.

The concentration of anti-epilepsy medication, carbamazepine, in her bloodstream was “well below a therapeutic level”, the inquiry heard.

In a similar case, Christina, from Forfar, was found dead by her father, Markos, on March 23, 2009 when he went to wake her. The inquiry heard that “her fists were clenched as sometimes when she had a seizure”.

Both girls’ death certificates listed their cause of death as Sudep, although the teenagers’ parents said they had never previously heard the term.

Sheriff Duff said Erin’s neurologist, Dr Martin Zeidler, had left the teenager with the impression her epilepsy would be “no more than a minor nuisance”.

Her family was concerned she “seemed confused about her medication regime” while her boyfriend, Lee McPherson, told the inquiry she appeared to be “hardly taking any medication at all” in the run-up to her fatal seizure.

“Lee McPherson thought Erin’s approach to her epilepsy was tainted by Mr Zeidler’s apparent blasé attitude to her condition,” said Sheriff Duff.

He concluded that Erin might have been more careful if Mr Zeidler had warned her about the risk from Sudep.

He added that Mr Zeidler had a “dismissive” attitude to guidelines advising clinicians to inform epilepsy patients about Sudep, which he regarded as a “jargon term”. The neurologist told the inquiry “he would not tell a patient about it unless a patient asked” because he believed the anxiety it could cause “was likely to be harmful”.

However, Sheriff Duff said Mr Zeidler’s reasoning was “not credible”.

Christina’s death might also have been avoided, said the sheriff, if she and her parents had been informed about the risk from Sudep. Christina had suffered an increased number of seizures in 2008, the last occurring three months before her death in March 2009.

One expert witness told the inquiry this trend should have alerted her neurologist, Dr Martin Kirkpatrick, to a “heightened risk of Sudep”. However, he was reluctant to alarm Christina and her family.

“Dr Kirkpatrick had no basis for concluding they or Christina were likely to experience inappropriate distress if advised of the risk of Sudep,” said Sheriff Duff.

Sheriff Duff concluded that her death might also have been avoided had a system been in place to check on her overnight, for example using an alarm to monitor her breathing.

In his recommendations, he said the “vast majority” of patients and their parents or carers should be informed about the risk of Sudep and any decision not to do so “should be recorded in the patients medical records”.

Jane Hanna, director of charity Epilepsy Bereaved, said: “People with epilepsy should be treated like any other patients who are managing a condition on a day to day basis and who need information to make choices such as medication taking and lifestyle.”