Doctors should warn epileptics of sudden death risk, urges sheriff

a ST ANDREWS University student who died from a condition related to epilepsy was not properly informed about the potential consequences of her illness by her doctor, a sheriff said yesterday.

Erin Casey, 19, died just six weeks into her first term at St Andrews in October 2006.

A fatal accident inquiry found that she died as a result of Sudden Unexpected Death in People with Epilepsy.

The same inquiry ruled that Christina Ilia, 15, a schoolgirl from Forfar, also suffered a seizure and died from SUDEP.

In his findings published yesterday, following the inquiry at Dundee Sheriff Court which ended in March, Sheriff Alistair Duff called for people diagnosed with epilepsy to be advised about the risk of sudden death. Both teenagers died in bed after suffering seizures.

Sheriff Duff found that neither teenager nor their families were warned of the risk because of the potential for “causing distress”.

He determined that “reasonable precautions” could have been made which might have avoided both deaths occurring, including knowing about the risk of SUDEP and not sleeping alone on the night they died.

The inquiry heard how Miss Casey, from Lundin Links, Fife, died in bed at her shared student house.

The sheriff heard evidence during the inquiry that Erin “did not comply properly with her regime of medication” and continued to have seizures.

He heard that if had she been told of the risk “she might have complied more assiduously” with it, which might have prevented the seizure suffered on the night of her death.

In his ruling, he said: “I have no doubt whatsoever that Erin should have been advised of the risk of SUDEP at or not long after her first diagnosis, albeit provisional, in April 2006.”

Her family discovered the term SUDEP for the first time when they saw her death certificate, the inquiry heard.

Regarding Miss Ilia, from Forfar, the inquiry was told how her father discovered her dead in bed in March 2009.

Her parents found out about SUDEP after carrying out their own research into the relationship between epilepsy and mortality as they waited for the cause of death to be certified.

In his recommendation, Sheriff Duff said: “The vast majority of patients with epilepsy, or their parents or carers where appropriate, should be advised of the risk of SUDEP on first diagnosis or if, in the particular circumstances of that patient, there are exceptional circumstances for delaying immediate provision of the information, then within a very short time thereafter.

“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.”

Epilepsy is the most common neurological condition in the UK with some 450,000 people diagnosed with it.

The risk of dying unexpectedly is estimated to be one in a thousand but is described as “vanishingly small” for those with a less severe type of the condition.

Sheriff Duff issued 11 recommendations in total, including reviewing the current arrangements for providing written information packs to newly diagnosed epilepsy patients and their families.

He further recommended that Tayside Police and other forces review their practice in their approach to the location of a sudden unexpected death after officers attending Miss Ilia’s home on the morning of her death described it as a “crime scene”.

He said the use of the phrase had been “inappropriate and grossly insensitive”.