'I hate wasting the hospital's time': Experiences of emergency department admissions of Australian people with epilepsy.

Aim: This paper investigates the reasons and extent of hospital emergency department (ED) attendance by people with epilepsy in Wave 4 of The Australian Longitudinal Survey 2016-17.

Method: Wave 4 had 393 respondents who completed the survey, which included questions relating to their use of hospital and healthcare services. Of these, 121 (31%; 82 females) reported one or more admissions to the ED within the previous 12 months. We conducted a mixed methods analysis - using quantitative measures to explore the type and number of admissions, factors relating to increased admissions, and a qualitative approach to explore respondent experiences of their admissions.

Results: Over half of the admissions reported were seizure-related, including injuries occurring as a result of seizures. More than 15% of respondents had more than four ED visits during the preceding 12 months of the survey. Those who had experienced seizures within the previous 12 months, irrespective of frequency, were more likely to have attended the ED compared with those who had not experienced a recent seizure. Self-reported income was another major factor in ED use. Experiences of hospitalization demonstrated frustration at being taken to the ED, loss of autonomy, and experiences of inappropriate care due to poor understanding of epilepsy. Some respondents did not want to waste the ED time as they felt that a rest was all they needed following a seizure.

Discussion: The rates of hospitalization for seizure-related reasons are in line with the findings of other epilepsy-related studies, as is the increased hospitalization rate of those from less well-off backgrounds. This study provided a valuable picture of the opinions and attitudes of people with epilepsy towards their healthcare services.

Conclusion: While this is an analysis of a small cohort, the consistency of reported experiences suggests that ED is not always felt to be appropriate following a seizure, and misunderstanding around the appropriate treatment of epilepsy continues in healthcare services.