Introduction NICE recommends that parents of children with epilepsy should be informed about the risk of Sudden Unexpected Death in Epilepsy (SUDEP). Guidelines suggest that information should be tailored on an individual basis, allowing parents the opportunity to minimise risk factors, such as identifying undetected nocturnal seizures and therefore highlighting an opportunity to optimise seizure control. Equally guidelines stress that parents of children with absence seizures alone can be reassured about the low risk of SUDEP. SUDEP remains an emotional topic, and current literature suggests that parents are poorly or not informed of this condition. This service evaluation was performed to assess SUDEP information giving by healthcare professionals to parents of children with epilepsy.

Methods 50 eligible families of children with a diagnosis of epilepsy were identified by attending follow–up paediatric neurology appointments at 3 hospitals in South–East Wales. A questionnaire was designed and used to interview participants about their awareness of SUDEP and from where they had sourced this information. A SUDEP information leaflet was offered to families if considered appropriate. Results were analysed using PASW Statistics 18.0.

Results 52% of participants were aware of SUDEP. 16% of participants had been informed of SUDEP by a paediatrician or epilepsy specialist nurse. 70% of parents aware of SUDEP had used alternative sources. The most common alternative source used was the internet, followed by the media. Participants who regarded their child's epilepsy as poorly controlled were more likely to be aware of SUDEP (p<0.05). Parents of children with nocturnal seizures aware of the risk of SUDEP were more likely to supervise their children at night than those who were unaware of SUDEP risk (p<0.05).

Conclusions Improvements need to be made in the provision of SUDEP information to parents of children with epilepsy. SUDEP awareness is shown to influence night–time supervision for detection of nocturnal seizures, which has the potential to reduce the risk of SUDEP. It is apparent that some parents are sourcing SUDEP information through unreliable means, such as the internet and media. Parents should receive reliable and accurate information by a healthcare professional, tailored to the individual child in a sensitive manner. This in turn should help reduce SUDEP risk, provide reassurance in cases where there is no or minimal risk and minimise the distress and uncertainty of SUDEP experienced by parents of children with epilepsy.