The “E” word: Epilepsy and perceptions of unfair treatment from the 2010 Australian Epilepsy Longitudinal Survey

AimThe aim of the current study was to examine self-report data on perceptions of unfair treatment due to epilepsy.MethodWe analyzed data from the 2010 Australian Epilepsy Longitudinal Survey, distributed to 621 registrants on the Australian Epilepsy Research Register. A total of 343 responses were received (55% response rate), providing insight into experiences of life with epilepsy in Australia. Responses relating to perceptions of unfair treatment in areas of employment, education and community participation as a result of epilepsy are reported in this article.ResultsForty-eight percent of respondents reported perceptions of unfair treatment as a result of their epilepsy, with most providing details of their experiences. Discrimination in the workplace remains of key concern, with 47% citing examples of unfair treatment in this setting.ConclusionsIn spite of Australian anti-discrimination laws, findings indicate that full-time employment rates for people with epilepsy are lower than previously reported, with further mechanisms for support required to improve education and reduce experiences of stigma.

► Almost half of respondents reported unfair treatment as a result of their epilepsy. ► 47% of those reporting unfair treatment experienced discrimination in the workplace. ► Full-time employment rates amongst respondents were much lower than the Australian average. ► Epilepsy education is required to reduce experiences of stigma and discrimination.