700 Section - The Role of the Epilepsy Care Support Coordinator in Medical Care for Patients with Severe Physical and Mental Disabilities

Objectives : In Japan, epilepsy care has historically been provided by departments such as paediatrics, neurology, and neurosurgery. Consequently, in many regions, neither patients nor healthcare institutions themselves are aware of which medical facilities offer specialised epilepsy treatment.

Design: In light of this situation, the Ministry of Health, Labour and Welfare and each prefecture selected medical institutions to implement epilepsy countermeasures. From 2018, the “Regional Epilepsy Care Coordination System Development Project” commenced. This designates one medical institution per region as an epilepsy care hub. These hubs provide specialist consultation support and facilitate coordination and liaison with other medical institutions, local authorities, and patients' families.

Results: Currently, 30 epilepsy support centres have been established across all prefectures nationwide in Japan. A key role in this initiative is fulfilled by the Epilepsy Care Support Coordinator, operating within a multidisciplinary team. Holding national qualifications in healthcare and welfare, their duties encompass providing specialist consultation support including rehabilitation, and facilitating coordination and liaison with other medical institutions, local authorities, and patients' families. The Epilepsy Care Support Coordinator certification scheme commenced in 2020. Attendance at training sessions conducted by the National Epilepsy Support Centres, the National Epilepsy Centres Council, and training at domestic and international epilepsy conferences is a mandatory requirement for certification. The total number of training participants reached 2,114, with 225 individuals achieving certification.

Conclusion:

Children and adults with severe physical and mental disabilities frequently have drug-resistant epilepsy. They require particularly careful attention and support tailored to each individual's condition and circumstances. Epilepsy care coordinators, working in multidisciplinary teams including rehabilitation specialists, play a vital role in the medical care of those with severe physical and mental disabilities.