The National Institute for Health and Clinical Excellence (NICE) recommends that people with epilepsy and their families and carers should be ‘given and have access to’ information about sudden unexpected death in epilepsy (SUDEP). The aim of this survey was to examine what, when and how information about SUDEP is disseminated to patients by clinical nurse specialists in epilepsy (CNSEs). Method : A total of 250 postal questionnaires were sent to members of the Epilepsy Nurses Association (ESNA) in July 2006. Responses were received from 146 nurses (58%). CNSEs accounted for 103 (71%) of the respondents. The remaining responses were excluded as not being CNSEs. Results : CNSEs discussed SUDEP with most patients (50%). They tended to raise SUDEP when discussing specific risks (48%) and general risk (71%). Forty-five CNSEs would discuss the issue at diagnosis and 17 when therapy was started. Risk factors mentioned included non-compliance (84%), safety risks (78%), nocturnal seizures (68%), alcohol/drugs use (67%) and history of status epilepticus (65%). The main behavioural responses noted were, improved adherence (62%), avoidance of risk (59%) and anxiety(49%). Only 57% of CNSEs were aware that guidelines regarding SUDEP exist. Conclusions : As SUDEP appears to be related to seizures, management should include optimal drug treatment and seizure control. This may present a challenge as patients generally want to lead as normal a life as possible.