UK framework for basic epilepsy training and oromucosal midazolam administration

Background: UK wide Oromucosal Midazolam is used as an emergency treatment in community for seizures administered by family/carers with the right training. The Joint Epilepsy Council (JEC) UK which produced the training guidelines disbanded in 2016. Purpose: Provide standards for basic epilepsy education and rescue medication (Midazolam) administration. Methods: The Epilepsy Nurses Association (ESNA), The International League against Epilepsy, British Chapter (ILAE) and the Royal college of Psychiatrists (RCPsych), used the Delphi process to update guidelines for the administration of oromucosal midazolam including developing a voluntary on-line test for carers. During 2017–2019 a facilitator worked with two ESNA committees to update the existing guidance and another to develop a question-bank. Both committee outputs were circulated to the ESNA membership, then ILAE and RCPsych for review. Patient-facing organizations and charities’ opinions were solicited. All feedback was assimilated. A private provider was contracted to deliver the test. Results: A consensus process involving two task and finish groups of 19 people each compared, reflected, debated, and engaged with stakeholders across three stages. The updated ratified guidelines were circulated nationally. The Delphi process highlighted many regions and individuals had local assessment tools and procedures in place, while others (around 50%) had no assessment provision. 278 carers with a 95% pass-rate and 100% positive feedback have undertaken the online test (10/2020). Conclusion: The UK-wide care provision gap in basic epilepsy-training and safe rescue medication administration is now addressed. A two-yearly update to the guidelines and test is planned.