Australian epilepsy organisations began to face the issue of SUDEP around nine years ago. Initially the most pressing need was to provide support for bereaved people seeking answers as to why a death had occurred. The unexpected loss of a young person is tragic for any family however, with SUDEP, families are devastated when they discover that epilepsy can cause death in this way. Many are angry that they didn’t know about SUDEP, and often blame themselves for not having sought out that knowledge. They wonder if the death could have been prevented and these emotions extend beyond the family to friends and colleagues, rippling out in waves through the community, compounding the grief. Epilepsy Australia counsellors offer whatever information and assistance is needed, for example providing information about SUDEP or helping families to understand post mortem reports. Support is given also by volunteers, who themselves have experienced SUDEP in their family. Bereaved families are carefully matched to this peer support as requested. As the network of bereaved families has expanded memorial services have been held in Melbourne with subsequent services held in other states.

The discussion of SUDEP has been promoted throughout the epilepsy community. A SUDEP session was coordinated for an Australian epilepsy conference in 1998 and brochures produced including an information kit distributed at the 23rd International Epilepsy Congress (1999). In conjunction with the release of the UK audit report (Hanna 2002) a media campaign was initiated to attract both public and government attention to epilepsy. It has been encouraging to see the effect of the audit on UK epilepsy management policy and we have always looked to the positive outcomes for epilepsy services generally in Australia, which might arise from an informed discussion of SUDEP by all stakeholders.

Australian data on epilepsy related deaths is inadequate and we have worked closely with the Victorian Institute of Forensic Medicine, not only to improve family support at the time of the death, but also to highlight the need for a uniform approach to the identification and certification of epilepsy related deaths. In 2004 this work resulted in a joint SUDEP presentation to the Australasian pathology conference.

At times we have been criticised for raising issues which might cause fear to patients. Certainly SUDEP can be confronting, but the topic is now out in the open around the world. We can’t ignore it. Health care services expect patients to be active participants in their own health care decisions and this requires patients to be informed. We have a responsibility to ensure that SUDEP information is clear and accessible. Rather than ignoring the topic of death we present it as part of a comprehensive discussion on epilepsy and risk.

There would appear to be positive outcomes that could be achieved by open and honest discussion of SUDEP. For example, consider Sudden Infant Death Syndrome (SIDS). It is not easy to tell parents that babies can die suddenly and unexpectedly. However, the SIDS campaign in Australia has led to a staggering reduction in child deaths. Raising public awareness educated parents about research findings, while attracting more the $15 million dollars to further that research. It is possible that there are more SUDEP deaths in Australia now than SIDS deaths, but very few dollars have been spent on SUDEP research in this country.

One interesting aspect of SIDS research is that the reduction of deaths has come about through the identification and management of risk factors although causative mechanisms remain elusive. With this in mind, and because we have several families that have experienced both SIDS and SUDEP, we have sought to facilitate joint research with SIDS researchers. To date we have been unsuccessful.

Looking back over ten years, progress with SUDEP issues has been positive but limited. Looking forward, much still remains to be done in the areas of research, education, and prevention.

Rosemary Panelli, Denise Chapman & Brendon Moss,
Epilepsy Australia

Reprinted with the permission of Epilepsy Australia-the national coalition of Australia epilepsy associations and Epilepsy Bereaved UK.