What is a Seizure Action Plan?

Have you heard of the phrase “Seizure Action Plan” or SAP? Is this concept new, or has it been around for a while? I haven’t heard of the terminology with my doctors, but I learned about it while working in the epilepsy field. In fact, I have learned so much working in the field the last 2 years and I hope that people who are either newly diagnosed with epilepsy, or have been living with it for many years, know all the resources and help that are available for them today.

What is a SAP and why is it important?

After researching, I’ve discovered different uses for SAPs (for example, in a home, school or work setting), but all of them have the same purpose—providing people you trust with a plan for what to do when a seizure happens. Epilepsy Alliance America also has an Acute Seizure Action Plan (ASAP) that “provides detailed health and medical information” about the person with epilepsy or seizure disorder. This action plan can be useful if the person feels comfortable and chooses to share it with anyone they interact with as well as school administration including teachers, nurses and coaches.

The education a SAP provides also helps people determine if the seizures they see are a medical emergency and there are different types of SAPs. For example, CURE Epilepsy shares details about a SAP as well as a Seizure Emergency Plan (SEP). If the medication doesn’t control the seizures, CURE Epilepsy advises it “may be necessary to develop a seizure emergency plan in addition to an SAP and that SEPs are especially important for people who experience prolonged seizures (status epilepticus) and/or seizure clusters which may need to be stopped through emergency rescue medication at the hospital.” In general, a seizure action plan includes health and medical information that helps others recognize seizures and take appropriate steps to keep the person safe from injury or damage caused by prolonged seizures. Also, if you work and feel comfortable talking with your employer, you can use a seizure action plan for work with this printable Epilepsy Foundation seizure action plan .

When were SAPs created?

Having been diagnosed with epilepsy over 20 years ago, I often wonder why I haven’t heard of a lot of what I’m learning now working in the field. I believe the simple answer is that so many of these resources, terminology and even organizations or foundations I’m finding today are actually new. I’m not even sure if many neurologists or epileptologists talk about SAPs with their patients (I have yet to hear the term SAP when visiting my epileptologist), but what I do know is that if you do some of your own research, or hear about and reach out to Epilepsy Alliance America or Epilepsy Foundation , they will provide you with more resources and education than you can imagine!

After researching its origins, I found that the SAP concept was created recently in 2020, by The Seizure Action Plan Coalition which was founded by the LGS Foundation , Dravet Syndrome Foundation and TSC Alliance . And, in 2023, Epilepsy Alliance America became the managing organization of the coalition.

Create your own SAP and help raise awareness

Although we are clearly in the beginning of continuing to raise awareness about epilepsy in general, it can only help to share what you’ve learned here about SAP with others and create your own SAP if you or a loved one have epilepsy. A student seizure action plan or seizure action plan for teachers can also be helpful, and if you haven’t heard of any at your school yet, I might suggest talking with the school’s administrators or connecting with the Seizure Action Plan Coalition about how to approach your child’s school and what seizure action plan form to provide them.

The Seizure Action Plan Coalition says, “It is important to educate patients, healthcare providers, and the general public about the importance of SAPs.” Help raise awareness and create your own SAP with this seizure action plan example .

Written and edited by Amber Kaiser and originally published on the Neureka blog