Epilepsy Australia

Life with Epilepsy Report
Joint Epilepsy Council of Australia [JECA]
Australian Chapter of the International Bureau for Epilepsy. 6pp. 2007

This report examines the findings of Australia's largest nationwide survey conducted amongst people with epilepsy and their carers that aimed to quantify the true impact living with epilepsy has on individuals.

This survey was widely distributed through Epilepsy Australia Affiliates as members of JECA.

The Life with Epilepsy Report provides valuable insight into what it means to live with epilepsy and helps to improve understanding of the current issues faced by those living with the condition.

Key findings include: the impact of epilepsy on the ability to undertake day-to-day activities such as working or studying; avoiding public transport for fear of seizures thus relying on friends or family to get around; the generally heightened costs of living with a chronic illness combined with the inability for many people with epilepsy to gain full time employment, significantly higher levels of psychological distress among people with epilepsy than the general population, transport issues and discrimination.

Download the Life with Epilepsy report here.

Copies of this report are freely available from all Epilepsy Australia Affiliates or by emailing epilepsy@epilepsyaustralia.net

Researching the personal impact of epilepsy.
Dr Christine Walker, Chronic Illness Alliance for
Epilepsy Foundation of Victoria. 35pp.
Published by Epilepsy Australia, 2007

This project was undertaken by The Chronic Illness Alliance in partnership with The Epilepsy Foundation of Victoria [EFV] to research the social and emotional issues that impact on the lives of people with epilepsy and to use the results of the survey to:

• contribute information on the needs of people with epilepsy to an applied research agenda that ensures future applied social research conducted by the EFV meets the needs of people with epilepsy;
• improve the services currently offered to clients of the EFV and
• develop a better community understanding of the needs and capacities of people with epilepsy

Workshops were held throughout Victoria with a range of areas identified by participants as important to them and where they would like to see more research undertaken. In priority these are: community awareness, mobility issues, employment and education, disclosure, quality of life issues, sports, costs and information.

Recommendations arising from the project:

• A survey of Australian community attitudes towards epilepsy will be undertaken.
• A community awareness campaign on the needs of people with epilepsy e developed.
• Research into attitudes towards epilepsy among Australian employers to improve employment opportunities and the work environment for people with epilepsy
• Further social research in those areas identified by workshop participants where they experience exclusion, such as sport, education and employment. Applied research projects should address the social exclusion people experience.

The project was not able to reach all groups of people with epilepsy to consult with them. This project recommends that:

Further project be undertaken to consult with people with epilepsy from other culturally and linguistically diverse groups, prisoners and ex-prisoners with epilepsy and indigenous people with epilepsy. This will help to meet the needs of these communities as identified by JECA.

Download Researching the personal impact of epilepsy report here

Printed copies of this report are freely available from Epilepsy Australia Affiliates or by emailing epilepsy@epilepsyaustralia.net