SUDEP Action working with Partners Against Mortality in Epilepsy
The Partners Against Mortality in Epilepsy (PAME) conference is a biannual event that aims to tackle deaths including Sudden Unexpected Death in Epilepsy (SUDEP).
This year, SUDEP Action Chief Executive Jane Hanna OBE, Deputy Chief Executive Karen Osland, and International Research Officer Rosey Panelli were sponsored to take part in the three day event which took place in Washington, USA.
The 2016 meeting goal at PAME was to increase the sense of urgency and accelerate action around an overlooked and underfunded public health issue – Sudden Unexpected Death in Epilepsy and other causes of mortality in epilepsy.
Jane presented on disclosing and managing risk as part of prevention and she chaired a session on speeding up change.
“Working with partners at PAME is an important part of speeding up change to tackle mortality. It is only through global, as well as local working that this will happen. The 2016 event was full of energy and hope. Presentations revealed the dramatic rise in research papers in this field since around 2002. Valuable lessons have also been learnt from the UK about use of guidelines. Risk information has been available since 2002 but our safety tools - EpSMon-self-monitor App; SUDEP and Seizure Safety Checklist and e-learning for GPs attracted great interest and featured in presentations about how we can speed up change”
SUDEP Action projects featured at the conference also included SUDEP-The Global Conversation; SUDEP Awareness Day; The Epilepsy Deaths Register and the SUDEP Action specialist service for supporting the journeys of all families affected by any epilepsy-related death.
Karen, Rosey and Professor Henry Smithson who provides research support for The Epilepsy Deaths Register, participated in a panel discussion on lessons learnt in grief and how to support families. Henry led an open discussion session on communication of risk.
Karen said: “Since 2011 the American families have had an opportunity to connect with the work that is being done to tackle deaths and it was an honour for us to meet the families that attended. It was clear that bereaved families drove the cause in the US and have a huge contribution to make to progress. The importance of families being told about specialist services that support their journey and involvement in prevention was a key theme at PAME as it is here in the UK “
The conference brings together a diverse group of stakeholders including professionals (clinicians, basic science researchers and others), public health officials, people with epilepsy and bereaved families.
The write up from the conference and slides from the presentations will be publically available in due course.