We targeted two major priorities in our care for children and young people with epilepsy.
(i) Referral time by primary care to a specialist in Paediatric Epilepsy.
(ii) Information shared and, in particular the very difficult subject of SUDEP.
Aims and objectives
(i) Helping primary care refer to a specialist with 2 weeks of a first suspected non-febrile seizure.
(ii) Providing more information to parents and families particularly information about SUDEP.
Reasons for implementing your project
(i) Most referrals from primary care were seen thorough Choose & Book appointments which often involved an excessive delay in a child being seen for a suspected first non-febrile seizure.
(ii) Although information was given about epilepsy, this was in a somewhat ah hoc way with incomplete coverage and we had no suitable information to give as a Patient information Leaflet (PiL) about SUDEP in children and young people.
How did you implement the project
(ii) A SUPED PiL has now ben produced (refer to supporting material) which is specific to the needs of young people and the parents of children with epilepsy. This forms part of our newly created comprehensive list of information filed in the notes to ensure all information specified by NICE CG137 is shared with such families (see Paediatric Epilepsy Checkist in supporting material).
(ii) We now have an Epilepsy Check List in the notes of all children and young people with epilepsy to comply with the information sharing specified by NICE CG137. In addition when families are ready we have a suitable SUDEP PiL for them to read and promote safety and help in future discussions. We intend to audit this in 2013.
Key learning points
(ii) However good one feels information sharing is, it is rarely comprenhensive. An Epilepsy Check List provides exactly that: a way of ensuring that all relevant information is eventually shared through the disclosure of on-going care. To our knowledge, our SUDEP PiL provides the first patient information leaflet aimed specifically at the difficult subject of SUDEP in children.