An Australian-first telephone and email service to support people living with epilepsy and their families has been launched today by Epilepsy Action Australia, the country’s longest serving provider of education and support services to people with epilepsy.
The Epilepsy Nurse Line, which is available from 9am to 5pm seven days a week in all Australian states and territories, has been funded by the Australian Government Department of Health, addressing a condition that the World Health Organisation (WHO) refers to as ‘neglected’. WHO also declared that addressing the quality of life of people affected by epilepsy is a public health priority.
Carol Ireland, CEO of Epilepsy Action Australia, said, “The Epilepsy Nurse Line has been developed specifically to improve health outcomes for people affected by epilepsy. Each call will be answered by a Registered Nurse with special training in epilepsy management, so callers can trust that the information they receive will be accurate and safe.”
Minister for Health, The Hon. Greg Hunt MP, said, “People living with epilepsy in Australia now have a trusted and responsive resource they can count on for all kinds of information related to their condition. The Epilepsy Nurse Line will greatly reduce the amount of time it would otherwise take for a person with epilepsy to receive trustworthy advice from a qualified allied health professional, and the Morrison Government is proud to have provided funding for such a valuable service.”
The Epilepsy Nurse Line, which includes both a telephone and email service, will be especially lifechanging for people living in rural and remote regions of Australia, who may have limited access to medical professionals trained in epilepsy management.
“There are around 250,000 people diagnosed with epilepsy in Australia,” continued Ms Ireland, “and many of them only see their epilepsy specialist once or twice a year. The Epilepsy Nurse Line will mean that a person who has a question about their medication can get an almost instant response, or a person concerned about a family member who has had a seizure can get immediate advice as to what to do next.”
Associate Professor Armin Nikpour, Head of Neurology at Royal Prince Alfred Hospital in Sydney, welcomed the launch of the Epilepsy Nurse Line, saying, “Epilepsy is an incredibly complex condition and can also be very unpredictable. I know that many of my patients with epilepsy and their families will find this new Epilepsy Nurse Line extremely helpful in terms of accessing reliable, safe and qualified information about their condition, at a time when they need it most.”
Calls to the Epilepsy Nurse Line will be answered immediately by a Registered Nurse trained in epilepsy management and emails will be answered within 24 hours. The Epilepsy Nurses on the helpline are qualified to answer questions about medications, lifestyle implications of epilepsy such as drinking alcohol, driving, playing sport or pregnancy, planning for the NDIS, employment, first aid, seizure management and more. The Nurses can also refer callers on to external services or more specialist Epilepsy Nurses and Consultants, if the nature of the call warrants further assistance.
Donna Shrimpton, from St Peters in Sydney, who has lived with epilepsy for almost two decades, said, “Living with a chronic condition like epilepsy means I’m often calling to make an appointment at my doctor’s or specialist’s office, but sometimes I just have a really simple question, maybe about some new symptoms, or medication side effects, and it’s frustrating to have to make a doctor’s appointment to get these questions answered. The new Epilepsy Nurse Line will mean I can get this information from a healthcare professional trained in epilepsy management, exactly when I need it – at home, at work, or even on the train if necessary. It will save so much time.”
Michelle Whitelaw, of Amberley in QLD, who’s 14-year-old son Jai was diagnosed with epilepsy in 2010 agrees, adding, “When Jai was first diagnosed, we felt so isolated and lost. We had no information or support and started using Google to find out more about his condition. And believe me, there’s a terrible amount of misinformation out there on the internet. This new Epilepsy Nurse Line will make getting accurate and safe information so much easier – it’s really going to help a lot of families.”
