The current clinical practice and experiences in buccal midazolam prescribing in community for status epilepticus termination in the United Kingdom: The Rescue Epilepsy Medication and Training (REMIT) study

•Terminating status epilepticus (SE) is the goal of pharmaceutical rescue therapies.•Epilepsy clinicians community rescue prescribing for SE termination was evaluated.•Guideline concordance of buccal midazolam (BM) as 1st line therapy in SE was noted.•Many respondents expressed concerns of BM overuse, misuse & abuse by patient/carers.•This is the 1st study on community management of rescue therapies particularly BM. Epilepsy is one of the commonest neurological conditions worldwide and confers a significant mortality risk, partly driven by status epilepticus (SE). Terminating SE is the goal of pharmaceutical rescue therapies. This survey evaluates UK-based healthcare professionals’ clinical practice and experience in community-based rescue therapy prescribing. A cross-sectional, 21 item questionnaire composed of Likert-style and free-text based questions was administered online. It was distributed through a non-discriminative snow-balling methodology to members of the Epilepsy Specialist Nurses’ Association (ESNA) and the British International League Against Epilepsy (ILAE). Quantitative analysis used Chi-squared, Fishers’ exact and Mann-Whitney tests. Qualitative data were analysed through NVivo 14 software, following Braun and Clarke methodology. 86 participants comprising of nurses (n = 64) and doctors (n = 21) responded. Participants’ responses reflected guideline-concordant use of emergency management plans and buccal midazolam (BM) as a first-choice therapy for terminating tonic-clonic seizures in SE. However, significant variation (P < 0.05) was found between doctors and nurses in prescribing practices of BM including maximum dose prescribed/day, withdrawal plans and the use in multimorbid patients. Eight themes were identified with some suggestive of concerns of overuse, misuse and abuse of BM by patients/carers. This is the first study to give insights to community management of SE using rescue therapies particularly BM. Further evidence-based guidelines are needed for BM use in multimorbid patients and for its deprescribing. Robust safeguarding protocols and vigilance is needed to regulate BM's misuse and abuse potential. Oncoming community-based technology could provide objective assurance for evidencing utility of rescue medications.