A Scottish sheriff has this week said that people with epilepsy should be told about the risk of Sudden Unexpected Death in Epilepsy (SUDEP).
The judge, Sheriff Alastair Duff, conducted a fatal accident inquiry into the deaths of two young women in Scotland. Erin Casey, 19, died in 2006 and Christina Ilia, 15, died in 2009. Both died from SUDEP. Neither had been advised of the risk of SUDEP by their doctor. The Sheriff concluded their deaths might have been avoided had they been informed of the risks and taken precautions to minimise these risks.
In his report, the judge made a series of recommendations. These include that the majority of people with epilepsy should be told about SUDEP when first diagnosed. Any decision not to do this should be noted on medical records.
It is well known among epilepsy charities that information about SUDEP is not always passed from doctor to patient. It is vital that people with epilepsy and their families are made aware of the factors that can increase the risk of SUDEP and how to manage them. There are steps people with epilepsy can take to help to lower the risk of SUDEP. These include always taking anti-epileptic drugs as prescribed and avoiding situations which may trigger seizures such as lack of sleep or stress.
Epilepsy Action welcomes the recommendations made in this report. We hope that they are adopted in Scotland and that similar steps are taken across the rest of the UK to help prevent people with epilepsy dying unnecessarily.
Anyone concerned about epilepsy and SUDEP can call the Epilepsy Helpline on Freephone 0808 800 5050 or read our information on SUDEP.