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

Abstract Aim The aim of the current study was to examine self-report data on perceptions of unfair treatment due to epilepsy. Method We 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. Results Forty-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. Conclusions In 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.