Support for Epilepsy in ACT
This is a short survey seeking feedback on the support that is needed and available for people with epilepsy in the ACT, their families, support network and friends. The information from this survey will assist Epilepsy ACT in their strategic planning to ensure that they continue to meet the needs of those with epilepsy and their support network.
Please select the option that best describes you
I have epilepsy
I am an the primary carer of someone with epilepsy
I help to support someone with epilepsy
The following questions relate to the person with epilepsy
How many years have passed since diagnosis?
< 1 year
Attend school, university or other training provider
Retired, a full time carer, or not in the workforce
I feel like those in my school/workplace have the information they need to care for me
What sort of information is the most valuable for my school or workplace?
I/they have a current epilepsy management plan
I have had one but it is not current
I don't know what an epilepsy management plan is
Do you feel that your/their epilepsy is managed in day to day life?
Are you/they currently eligible for NDIS funding to assist in the management of your/their epilepsy?
We want to know about the type of support you feel is most important for those with epilepsy and their families
If you think back to the time of the first signs of epilepsy and initial diagnosis, did you feel comfortable that you had the information you needed?
Can you briefly describe the sort of support that would have assisted during that time?
Have you heard of Epilepsy ACT?
If so, which of their services were you aware of?
Personal advocacy and referral
Training of teachers, carers and workplaces
Information for families and employers
Raising awareness of epilepsy and fundraising
Support, reassurance and counselling
Epilepsy Management Plans
Have you accessed the support from any of the following Epilepsy organisations?
Epilepsy Action Australia
How did you find out about this/these organisations?
If so, was the support you received helpful? What were the best parts about the support? Was there anything lacking?
Thank you for your time, is there any other feedback you would like to provide that will assist in ensuring those with epilepsy and their families are well supported?
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