In 2013 I contacted the National Association of Epilepsy Centers (NAEC) to encourage them to take action on the lack of readily available information on Psychogenic Nonepileptic Seizures (PNES) as well as the lack of established treatments and treatment providers. I told them that those with PNES often go to an epilepsy center where they are misdiagnosed as having epileptic seizures. Based on reports as many as 30% of those seeking help at epilepsy centers are not correctly diagnosed and it often takes up to 12 years for the correct diagnosis of PNES to be made.
After conference calls with Ellen Riker, the Executive Director of the NAEC, and David Labiner, the President of the NAEC it was clear that they both acknowledged these facts and the need to take action. I was asked to present to them my idea for how to help those with PNES and that I would have to get the backing of two professionals in the field of PNES/Epilepsy. I received that backing from two of the top leaders in the field of PNES diagnosis and treatment, Curt LaFrance, Jr. MD, MPH (Assistant Professor of Psychiatry and Neurology (Research), Alpert Medical School, Brown University and Director of Neuropsychiatry and Behavioral Neurology, Rhode Island Hospital) and Selim Benbadis, MD (Director, College Of Medicine Neurology, Professor, College Of Medicine Neurology). I then submitted a detailed business plan/budget that I called the PNES Action Plan.
This was a program to support those newly diagnosed with PNES and help them understand these seizures and to share our own story so that they did not feel alone in this challenge. Only an actual PNES patient and spouse can truly empathize with those who are feeling the shock of first being told what they now have to deal with.
After a long wait the NAEC turned down the plan. They thanked me for, in their words, starting a conversation and that they would take on the responsibility themselves to provide a solution to their situation with PNES misdiagnosis. They also said that they would keep in touch on their progress.
After another long stretch of time I reached out and made contact with Ellen Riker. She had notified that at the NAEC Board meeting that they had agreed to work with Curt LaFrance, MD on a pilot project to train epilepsy center personnel on caring for PNES. Ellen Riker stated that “NAEC intends to have two individuals trained this year, who commit to training more professionals in the future. Our hope is to expand the training program to more centers in future years.” This is incredible news of course. Many of you no doubt have knowledge of Dr. LaFrance’s standing in the PNES community and that encourages me. He has been highly proactive in the pursuit of PNES knowledge and treatment.
The other element is detailed and up to date information about PNES which she said would be added to their website later this year. I would ask that this be done within the next 30 days. There is no reason in my mind to wait that long to start to provide urgently needed information.
Let me say clearly now that I have contacted and discussed these issues many times with other professional organizations, including the Epilepsy Foundation, and individuals and have heard the same desire to do more to help those with PNES. And often there has been no follow through. It is my hope that the NAEC plans to make a commitment to seeing this through. The amount of physicians who could get up to speed and begin treating patients in a reasonable time frame is concerning to me but it’s a great step. The most important thing is for the NAEC to not lose momentum on this.
I would say that in their case they have a compelling reason to take immediate action. It is their epilepsy centers who see the vast majority of those you develop PNES. And it their responsibility to accurately diagnose and then provide treatment in line with their own Association guidelines. Currently very few of their member centers are following their published guidelines which state that their Level 3 & 4 Epilepsy Centers must have treatment plans for those with PNES. These guidelines can be found on their website at http://www.naec-epilepsy.org/spec_care/documents/NAEC-FinalGuidelineswithruralcenterrevision.pdf.
I. Third Level Epilepsy Center
b) An established referral arrangement for comprehensive management of psychogenic nonepileptic events.
II. Fourth Level Epilepsy Center
A. SERVICES PROVIDED
d) Comprehensive management of psychogenic nonepileptic events.
I will be covering their progress closely as it has the potential of improving the lives of so many who struggle with PNES. There are many who are interested, but fewer who are committed. Let’s hope that the NAEC will in a timely manner achieve true relief for PNES patients.