Brief Communication Epilepsy awareness and emergency rescue training: Ignorance is bliss! Rohit Shankar a,b, ⁎, Caryn Jory a , Brendan McLean c , Phil Tittensor d , Matthew Walker e a Cornwall Partnership NHS Foundation Trust, UK b Exeter Medical School, UK c Royal Cornwall Hospital Truro Cornwall, UK d Royal Wolverhampton NHS trust, UK e UCL Institute of Neurology, UK abstract article info Article history: Received 23 January 2017 Revised 5 March 2017 Accepted 5 March 2017 Available online xxxx Status epilepticus (SE) has a high mortality rate and is associated with complications such as neurological deficit and cognitive decline. Buccal midazolam is the recommended emergency rescue medication in the UK to reduce the duration of a seizure and SE. It should be administered by an appropriately trained person. There are agreed guidelines on training standards for its administration in the UK produced by the Joint Epilepsy Council of the United Kingdom and Ireland. Training should provide an overview of epilepsy to facilitate safe, person- centered care and appropriate administration of rescue medication to people with epilepsy (PWE). Unfortunately the current guidelines do not assure satisfactory practice. An investigation was conducted to quantify the nature and degree of the problem in Cornwall, UK (population 550,000). To address the identified inconsistencies, a web-based test was developed using a focus group of experts and stakeholders. Over 800 carers for PWE took the test at different intervals of its development. A consistent 20% failure rate was noted. Over 90% of participants felt it kept PWE safer. The test was incorporated into routine clinical practice and has contributed to reduction of primary epilepsy deaths. The e-test is a cost-effective solution to help harmonize practices across different settings and can be easily adopted by other countries. © 2017 Elsevier Inc. All rights reserved. Keywords: Emergency rescue training Midazolam Status epilepticus 1. Background It is estimated that 42% of the 1200 deaths/year due to seizures in the UK are potentially avoidable [1]. Convulsive status epilepticus (SE) is a medical emergency with high morbidity, especially if early treatment is not initiated [2]. Ten percent of all UK Emergency Department (ED) admissions are due to seizures, usually over-represented by cases of SE [3]. The majority of epilepsy cases seen in ED are admitted into med- ical care [4]. When a seizure lasts for 5 min or more the patient is at high risk of continuing into SE and this may result in death or brain damage [2]. Receiving appropriate treatment on time depends not only on the presence of another person but also on that person being appropriately trained to recognize the situation, and to administer, if required, rescue medication. Rescue medication be administered by a trained person and is wide- ly used due to its effectiveness and social acceptability. In the UK, epilep- sy education and training courses are expected to be conducted by epilepsy professionals in line with the agreed training guidelines of Joint Epilepsy Council (JEC) backed up by evidence from National Insti- tute of Clinical Excellence (NICE) [5,6]. The JEC of the UK and Ireland (JEC) was an umbrella charity consti- tuted in the early 2000s to provide the representative voice working for the benefit of people affected by epilepsy in the UK. It involved all leading clinical organizations and charities. Its mission was to represent the united voice of epilepsy in the UK and Ireland and to present evidence-based views on the need for improved epilepsy services and influence decision makers in the health, social, and education arenas. The JEC produced the 1st nationally recognized incidence and preva- lence of epilepsy in the UK and Ireland in 2005. It followed this up by providing the 1st guidance on minimum standards needed in training and administration of midazolam in community [7]. The JEC was disbanded in 2016 due to lack of funding, leaving a vacuum in sustaining and delivering current good practice. The stage of management focused on by these guidelines is the premonitory or pre-hospital stage for patients who have established epilepsy and have increasingly frequent or severe seizures and which precedes the status epilepticus (SE). This stage can usually be managed well in community with appropriate understanding of the individual's epilepsy and a good care plan to use rescue emergency medication. Emergency treatment will usually prevent the evolution to true SE. Buc- cal midazolam is an emergency rescue medication prescribed routinely in the UK to reduce the duration of a seizure and prevent SE [2,8]. Buccal Epilepsy & Behavior 70 (2017) 212–216 ⁎ Corresponding author at: Chygovenck Threemilestone Industrial Estate, Highertown, Truro, Cornwall TR4 9LD, UK. E-mail address: Rohit.shankar@nhs.net (R. Shankar). http://dx.doi.org/10.1016/j.yebeh.2017.03.010 1525-5050/© 2017 Elsevier Inc. All rights reserved. Contents lists available at ScienceDirect Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh