Table 4

 Reponses to the question “If you do discuss SUDEP with your patients when do you do so?”

• Variable, sometimes spontaneously and always if asked
• When asked and when I think it is appropriate, although it is always a subjective assessment
• If refuses treatment
• If not compliant with treatment
• To help patients decide they should go on treatment
• If there are problems with adherence to treatment that are putting the patient at increased risk
• If patient is considering the option of no treatment
• Riot act for non-compliance
• Those patients with frequent attacks who decline drug therapy
• If the patient asks generally what the risks of epilepsy are
• Since I qualified in 1969, none of my patients have died of SUDEP. I see children and adolescents with special educational needs. None of them or their parents has ever asked about SUDEP
• I discuss that epilepsy is dangerous and death can result. I do not state that if they have it they are at risk of death immediately and at any time
• If another member of the family/friend has been a victim of SUDEP
• Difficult to say, but when it feels appropriate—that is, patient led