Table of responses from people with epilepsy (PWE) demonstrating the value of social support over 9 years

WavesQuotations demonstrating social support needs
Wave 2. Effects of stigmatising events impacts on seeking social support“People feel you are not able to be left alone or be independent in case you have a seizure.”
“People can judge you because of this condition.”
“When a person or group of people, an employer, a public servant or another person in a position that requires communication with you as someone with a disability that has a direct link to what they feel is a problem.”
Wave 4. Emotional/Informational support required from psychologists and counsellors but often difficult to access“Just having such a centre in your community provides a genuine feeling of being in real social contact.”
Wave 4. Family support valued“At one time he (son) lived independently with main meals with us until side effects with Epilim kicked in 2016.”
Wave 4. Peer support highly valued“Having been involved with the xxxx Adult Support Group since moving to xxxx in 2002, our monthly social activities provide a support base where you share your time together as ‘normal’ people.”
Wave 5. Access to specialist epilepsy services valued“At the moment my neurologist is elderly and old-fashioned in knowledge of epilepsy. Having difficulty getting a referral to a more up to date, knowledgeable neurologist.”
Wave 5. Regional PWE value state-based epilepsy services“In the early years of my epilepsy when I was very unstable with seizures and loss of licence in the country—the epilepsy organisation was my saviour (it was a very lonely experience). They also offered reading material and get-togethers with other persons like myself.”
“(Epilepsy organisation) promotes current technologies. The glasses with cross-polarised/polar blue have enabled me to leave an abusive husband, drive, not have a seizure since I have been with that husband (2012), work full time, single parent and write a textbook.”
“Getting in contact with the (epilepsy organisation) is what eventually got me diagnosed with epilepsy (and got me the seizure control I have today!!).”