Epilepsy Connections'Beyond the Clinic Walls

ABSTRACT

Objective: As part of Epilepsy Connections' role in providing support to people affected by epilepsy, we aim to raise awareness of epilepsy at a community/grassroots level, with particular focus on (1) school communities through our Schools Project/Seizure-Smart Schools;and (2) providing fun activities for families affected by childhood epilepsies (FACE). We recognise that for young people with epilepsy (YPE) to live their lives to the full, their needs go much further than the clinical involvement of their healthcare teams. Our objectives were (1) To promote knowledge of epilepsy, seizures and how to help when a seizure happens'so that YPE can go about their lives, confident that the people around them are informed and respectful;and (2) to provide fun activities for YPE and their families. Method(s) (1) Age-appropriate playground-based activities (message games, story time/roleplay/drama, arts and crafts, using hands-on brain/neuron models) for nursery/primary classes, and workshops for secondary/college students/school staff;(2) large-scale public events (virtual festivals and face-to-face) in collaboration with the Glasgow Science Centre, and EPNA Congress in Glasgow;(3) bespoke, supported days out for individual families;(4) Three residential trips to Ardentinny Outdoor Education Centre since September 2021, for families new to us and those already accessing our services. Result(s) (1) Engagement with thousands of participants;(2) YPE and families took part in fun, adventurous outdoors activities (canoeing, gorge walking, climbing, abseiling, forest and beach walks), got together for meals, informal peer support and family disco! Conclusion(s) Families value having breaks and activities in a supportive, inclusive and bespoke way. We re-modelled how we provide our activities within school communities and with FACE, to reflect COVID-19 protective measures. Nonetheless, the ongoing impact of COVID-19 restricts opportunities to engage.