1. Introduction

20% of survey complete.
The Epilepsy Foundation of Victoria has formed a partnership with Flinders University and Bendigo Community Health Services (BCHS) to explore levels of epilepsy knowledge and the level of involvement of people with epilepsy and their family in developing their Epilepsy Management Plan.

This information will be used to develop best-practice epilepsy management resources to ensure people and families living with disability can communicate their needs across different settings and service providers – your input is important!

If you live in Australia, are over the age of 18 years with a disability and epilepsy, or you are a family member with a person with a disability and epilepsy of any age, please complete this short 20 minute online survey. Paid support staff may also complete the survey on behalf of clients over the age of 18 years with their consent. Questions will relate to your knowledge of epilepsy, and your Epilepsy Management Plan (if you have one).

All information provided will be treated in the strictest confidence and no participant will be individually identifiable in the resulting report or other publications. This survey can be completed and returned anonymously. You are, of course, free to decline to answer particular questions. Please be assured that this will not result in any discrimination, reduction in the level of support, or any other penalty.

How do I complete this survey?

You can read through the questions before you enter any data if you wish. Please try to answer all questions. If you are not sure of an answer, just tell us what you can remember.

The survey closes 30th September 2013.

If any of the questions cause you to feel concerned, upset or needing further support, please contact the free Epilepsy Australia helpline (Tel.1300 852 853) if epilepsy related. Lifeline provides a 24 hour crisis service (Tel 13 1114). For more information about this study please contact Juliette Parker at the Epilepsy foundation of Victoria on jparker@epilepsy.asn.au or (03) 8809 0672. For information about the services of Epilepsy Australia in all states please visit (http://www.epilepsyaustralia.net/).

Thank you so much for participating in this survey. The final research report will be available to view on the Epilepsy Foundation of Victoria web page in early 2013.

This research project has been approved by the Flinders University Social and Behavioural Research Ethics Committee (Project number 5965). For more information regarding ethical approval of the project the Executive Officer of the Committee can be contacted by telephone on (08)8201 3116, by fax on (08)8201 2035 or by email human.researchethics@flinders.edu.au

This survey is independently managed by the Epilepsy Foundation of Victoria and funded by a NDIS Practical Design Fund grant from the Australian Government Department of Families, Housing, Community Services and Indigenous Affairs.

The opinions, comments and/or analysis expressed in this survey are those of the author and do not necessarily represent the views of the Minister for Disability Reform and cannot be taken in any way as expressions of government policy.