A small steering group including Jane Hanna, Jennifer Preston, Professor Colin Binnie; Dr Edward Reynolds; Dr Stephen Brown; Dr Ley Sander and Dr Lina Nashef attracted the participation of 60 world experts and sponsorship from the pharmaceutical giant Glaxo Wellcome.
Work presented at the conference included a definition of Sudden Unexpected Death in Epilepsy by Dr Nashef which was adopted in the UK national clinical guidelines. It was also used in the development of a uniform international categorisation in 2011. This vital work was only possible because of a close collaboration between Dr Nashef and Epilepsy Bereaved and the involvement of bereaved families.
The outcomes of the international conference were:
- The first international publication on SUDEP in Epilepsia.
- Identified priorities for SUDEP research.
- Impetus for research, collaboration and change.
- Led to increased research activity on Sudden Unexpected Death in Epilepsy (SUDEP). This included the first large research study to highlight frequent convulsive seizures as the main risk factor for SUDEP.
- A successful campaign to governments across the UK to fund a national audit in epilepsy-related deaths to establish what proportion of epilepsy deaths were potentially avoidable.
Epilepsy Bereaved invited bereaved families to a memorial service in 1997. These services continue to this day every two years and have been used as a model in other countries around the world.
The year after the international workshop a parallel session was organised at the International Epilepsy Congress in Dublin (1997) and Jane Hanna was invited to speak alongside researchers. The session attracted a large audience and was the first international meeting of many that followed that included SUDEP.
Epilepsy Bereaved started to develop relationships with epilepsy organisations around the world. A survey with epilepsy organisations in 1995 (reported in Epilepsia) found that SUDEP was generally not included in the work or information of epilepsy organisations. Outreach work by Epilepsy Bereaved since 1995 changed this. Between 1995 and 2005 Epilepsy Bereaved was an invited speaker at international and national events across Europe; Australia and South America.
In 2004 Epilepsy Bereaved was included as a model of good practice in the EUCARE (European Concerted Action on Research in Epilepsy) Project.