Have you heard of SUDEP?
SUDEP Action Day – 23 October
Two years on from the 2017 announcement of their collaboration to share vital epilepsy risk information across Australia, SUDEP Action and Epilepsy Action Australia (EAA) are continuing their positive work together.
With epilepsy affecting approximately 250,000 Australians, the partnership is keen to show the need for further interventions, which would support risk communication and management between clinicians and people living with epilepsy. Many people are unaware of the risks associated with epilepsy and the existence of Sudden Unexpected Death from Epilepsy (SUDEP) which is not often spoken about and this important ground work has the potential to improve epilepsy risk awareness and management, which has the potential to save lives.
Carol Ireland, Chief Executive Officer of Epilepsy Action Australia, says: “Our collaboration with SUDEP Action is fuelled by the clear demand in Australia from clinicians and people living with epilepsy for more support in managing their condition. It is great to work with SUDEP Action to meet this need and EAA are proud to support SUDEP Awareness Day.
We are committed to supporting increased research to find out the exact cause of the fatalities, which affects around 1 per 1000 people with epilepsy. An exact cause is unknown. Researchers are investigating a range of possibilities such as the effect of seizures on breathing and the heart. Risk varies from person to person so it is important for people to learn about their own epilepsy and work actively with their healthcare professionals to minimise the number of seizures.”
This year’s International SUDEP Action Day is on Wednesday 23 October. This day we are launching the SUDEP and Seizure Safety Checklist. To improve knowledge and awareness of SUDEP and epilepsy mortality risk factors with clinicians and people living with epilepsy, Epilepsy Action Australia is launching the SUDEP and Seizure Safety Checklist. The Checklist is the first clinical tool in Australia to assist neurologists, GPs and other health practitioners to discuss and monitor risk factors with their patients aged over 16 years. It is used in a 10-minute consultation that provides the latest evidence on risk factors for premature mortality in epilepsy.
The SUDEP and Seizure Safety Checklist was originally developed in Cornwall (UK) as a collaboration between SUDEP Action and Cornwall Partnership NHS Foundation Trust in 2015 and is supported by leading experts. Partnership between Epilepsy Action Australia and SUDEP Action has enabled this Checklist to be made available in Australia.
In time for SUDEP Action Day 2019 on October 23, all Epilepsy Action Australia specialist epilepsy nurses will be trained in using the Checklist. This means people living with epilepsy anywhere in Australia don’t have to wait for a GP visit, they can make an appointment with an Epilepsy Action Australia Registered Nurse to start the discussion about reducing their risks. Epilepsy Action Australia will be the only epilepsy organisation in Australia to offer this life saving service for Australians over 16 years living with epilepsy.
“If you live with epilepsy, ask your doctor about the SUDEP and Seizure Safety Checklist. You can download an info sheet from the website to give to your doctor, or simply email or call to make an appointment with one of our specialist epilepsy nurses. Having regular conversations about epilepsy-related risks can help people living with epilepsy take positive actions that could save lives,” finished Ms Ireland.
SUDEP Action CEO, Jane Hanna OBE said, “This is an exciting collaboration which is now in its second year. We know there is much that can be done now to reduce risks and look forward to working with Epilepsy Action Australia to achieve this across Australia.
SUDEP Action has always welcomed collaborations with organisations in the UK and across the globe, to support increasing awareness of epilepsy risks and mortality. However, this is the first formal collaboration in Australasia to join forces to tackle these issues using existing resources and knowledge.”
According to Epilepsy Action Australia CEO, Carol Ireland: “This SUDEP Action Day, I urge you to find out as much as you can about SUDEP by reading some of Epilepsy Action’s more detailed information here and then contact your doctor if you have any concerns about you or your family member’s medication and seizure control.
If you would like to become involved in helping promote awareness, the official SUDEP Action Day page has a wealth of ideas including changing your social media covers or publicly displaying some of the great information posters available to download.
SUDEP Action Day provides an opportunity for us to truly take action on openly discussing SUDEP, and also for us to take a moment to consider the families of those who have lost someone as a result of epilepsy.”