19 year old Erin died in her sleep from Sudden Unexpected Death in Epilepsy (SUDEP) in 2006. She was in her sixth week at St Andrews University.
Erin had been diagnosed with epilepsy seven months previously and was taking anti-epileptic medication.
The drug began to interfere with her contraceptive pill and as a result she asked her GP for a different one.
In the meantime, Erin was gaining weight and feeling tired. She may have taken the decision to stop taking her anti-epileptic medication for a while or she may simply have forgotten to take it.
Either way, had Erin been informed about the risk of SUDEP, she may have been able to make a more informed choice about taking her medication if she knew epilepsy could prove fatal.
Erin’s family, boyfriend and friends are convinced that she would have continued her medication above all else.
Erin’s family complained that she had been struggling with her medication, but was never given the information and support she needed to manage her epilepsy during this difficult time.
An investigation by the Scottish Public Service Ombudsman (SPSO) into Erin’s death made five key findings. The report recommends that Fife NHS Board:
- Provide written information to patients following a diagnosis of epilepsy
- Increase access to an epilepsy specialist nurse.
- Apologise to Erin’s family that there is no evidence of an individualised decision being made not to tell Erin about Sudden Unexpected Death in Epilepsy.
Furthermore:
The Scottish Intercollegiate Guidance Network (SIGN) consider the findings and make the ‘giving of information about SUDEP part of a Key Recommendation’. There is an urgent need for research into SUDEP (Sudden Unexpected Death in Epilepsy)
Jane Hanna, Director of Epilepsy Bereaved commented: “The best evidence available today suggests that deaths from SUDEP could be significantly reduced. Whilst prevention measures have focused on the call for improved epilepsy services, we welcome the attention that the Ombudsman has given to information provision to patients. We also back her call for urgent research into SUDEP. The Ombudsman has now also recommended that in the interests of patient-centered care a decision not to inform a patient about SUDEP should be very carefully considered and has stipulated that any reason ought to be properly recorded in a patient’s notes”.
Epilepsy Scotland Chief Executive Lesslie Young said: “This is an independent report and the evidence clearly shows that epilepsy services in Fife did not meet national (SIGN) guidelines at the time Erin Casey was diagnosed. NHS Fife is now ensuring that patients have the appropriate information to manage their condition well. They have also employed an epilepsy specialist nurse to augment their service. We believe that knowledge gives people the power to make informed choices and manage their care. When this information is not universally provided, decision-making on the part of the individual and their families is difficult and becomes a lottery. Therefore, Epilepsy Scotland advocates that all those affected by epilepsy are given the information they need to look after their health and lead busy and fulfilled lives”.
During 2010 there will be a Fatal Accident Inquiry court hearing into Erin’s death.
