Katherine was thirty one years old when she died of SUDEP on November 13th, 2011. My introduction to SUDEP was short and shocking...
New Zealand: looking ahead
[Part 4: Action; Gouveia F]
When you attend an epilepsy congress, you go into the sessions with an expectation that you will come away with some increase in knowledge. I confess that I have not attended many, and I try to choose sessions that are non-clinical and likely to be of most interest for me in my day-to-day work as CEO of the national Epilepsy Association of New Zealand. The Association is a service provider of information and support to people with epilepsy, their families, and the community in general.
Directly reporting to me are approximately twenty epilepsy information and support specialists working in the community, out in the field so to speak, and we strive to increase their knowledge and development every way we can. They also attend some of the epilepsy congresses and most are trained to nurse level.
I had heard about SUDEP but gave it very little time, mainly because I felt it was a low priority and a part of the general mix. People did not like talking about it. It was in there somewhere and would surface when ready. Like many issues, it was pushed aside for lack of knowledge and skill. I wondered if it could be an issue that would disturb our stakeholders. It is a sensitive subject and I questioned if I had the resources to do anything about it and, if so, what.
So, when the Montreal congress came up in 2013, I found myself reading the stories in the previous editions of the SUDEP: Global Conversation books, during the long flight from NZ to Canada, and I decided to make a point of attending the sessions on SUDEP as I was motivated to find out more. It turned out to be more than that. I came away with a desire to do something, to elevate it up the list.
Now, thinking much clearer, I can see that there are two sides of SUDEP that we can act on here in New Zealand. Firstly, the Association can, and is well placed to, handle the knowledge of SUDEP, increase awareness and education in the community, and encourage people to speak out and inform others about the condition, especially health professionals.
Then, there is post SUDEP, for people, their families and communities that have suffered a loss. We are establishing a new organisation, with the guidance of others working in the SUDEP area to enhance the service we can provide.
So, change is coming. It started by attending a SUDEP session and coming away with increased knowledge but, most importantly, the determination to ACT on it.
Chief Executive, Epilepsy Association of New Zealand
Vice Chair, International Bureau for Epilepsy - Western Pacific Regional Committee
How to cite:
Gouveia F. New Zealand: looking ahead. 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.