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Epilepsy Australia works to ensure that epilepsy, as the most common serious brain disorder, is regarded as a specialist area of health management requiring specialist expertise and skills and therefore promotes and facilitates specialist research into the medical and social aspects of epilepsy.
Context
Epilepsy is the most common serious brain disorder in the World.
It is doubtful if any medical condition has been so universally neglected, due to a combination of social stigma, low profile and lack of resources World Health Organisation (1997).
Australian research indicates that people with Epilepsy, their families and carers are socially excluded and this impacts on their quality of life. The stigma and discrimination associated with Epilepsy is recognised as a significant barrier participation in both employment and in the community. The unique episodic nature of the many and varied epilepsies makes identification, management and life with Epilepsy both challenging and complex.
In Australia, there is little data available providing details of the incidence, prevalence and social impact of Epilepsy. This is a barrier to developing effective social policies and providing medical and other services to improve the lives of people with Epilepsy.
Terms of Reference
1. To report to the Parliament on the impact of Epilepsy in Australia, including:
Scope of the Inquiry
The inquiry will be undertaken in all states of Australia in order to examine reports and information available on the matters listed in these Terms of Reference and to supplement this material by additional inquiry and research where the information is incomplete or outdated.
Download Guide to making a submission
This report examines the findings of Australias 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
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:
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:
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
Epilepsy Australia National Help Line 1300 852 8653
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The Epilepsy & Society Programme is a one-day symposium for people with epilepsy, their family, friends and carers, and for those professionals working with people with epilepsy. Run in conjunction with the 8th Asian & Oceanian Epilepsy Congress to be held in Melbourne from 21-24 October, 2010, the final programme is now available.
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