The Netherlands: an action plan
[Part 4: Action; Thijs R & de Boer HM]
SUDEP awareness has increased substantially in recent years. As in many other countries, bereaved families have been an important force to put SUDEP on the agenda. SUDEP also entered the public domain as a result of a court case that received media attention. Together with the Global Conversation and the growing scientific interest, these strengths led epilepsy care to change.
Recent epilepsy guidelines issued by the Dutch Neurological Society promoted the routine inclusion of SUDEP information in counselling of people with refractory epilepsy and those with poor compliance.
To translate this recommendation into clinical practice, a first national joint SUDEP meeting was organised for all stakeholders in the Dutch epilepsy community. The meeting was organised with help from SUDEP Action. Representatives from the neurological societies, the Dutch League against Epilepsy, epilepsy centres, funding bodies, pharmaceutical companies and patient organisations joined in a working party to develop educational material. In parallel, actions were planned to raise awareness and help educate neurologists about SUDEP.
Another unmet need expressed by the stakeholders is a national registry of epilepsy deaths. Currently, reliable figures on epilepsy mortality in the Netherlands are still lacking. Obviously this effort will require a lot of resources and funding. As a first step toward a national registry, epilepsy centres took the initiative to start a local database of SUDEP deaths. It is an obvious challenge to classify the epilepsy-related deaths in view of the frequent lack of post-mortem examinations in the Netherlands. SUDEP awareness may help to increase the autopsy rate, but this will remain an issue of concern. For the future, we will strive to obtain funding to open a national register. Such a registry will have two major goals: to facilitate research projects and to help inform bereaved families about support in the aftermath of a death.
Roland Thijs, Neurologist, Stichting Epilepsie Instellingen Nederland (SEIN), Heemstede & Leiden University Medical Centre (LUMC), Leiden, The Netherlands
Hanneke M de Boer, Senior Officer International Contacts//Research Departmental Co-ordinator, Stichting Epilepsie Instellingen Nederland (SEIN), Heemstede, The Netherlands
How to cite:
Thijs R & de Boer HM. The Netherlands: an action plan. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [retrieved day/month/year]. Available from: www.sudepglobalconversation.com.
Kirsty was one of a pair. She has an identical twin sister - a mirror twin - a wonderful constant reminder. Kirsty’s first episode of epilepsy was at the age of 18...