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Seizure Action Plans
Seizure Action Plans: The Foundation of Epilepsy Education

Released: June 07, 2023

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Key Takeaways
  • Seizure action plans (SAPs) are an important educational tool that should be used for all patients with epilepsy, regardless of age.
  • An SAP should be thought of as a living document that is individualized and tailored over the course of a patient’s care.
  • Common components of SAPs include seizure terminology and identification, differentiation of “typical” from “emergency” seizure events and responses, and education on aftercare following a seizure event.

Consider the following scenarios:

  1. You are seeing someone in clinic, and you have just told them they have epilepsy. Before sending them home, you ask if they have any questions. They don’t say anything at first, so you think you’ve done a great job and are ready to welcome your next patient. As they get ready to leave, the person blurts out: “But what happens if I have another seizure? Do I call you or go to the emergency room?”
  2. A patient with diagnosed epilepsy has been to the emergency room twice for seizures since their last visit. Each time, the seizures had stopped by the time they got to the emergency room.
  3. A patient has reported an increase in seizures. Upon further questioning, he tells you that he has had days with multiple seizures. Last month he was admitted to the hospital after a cluster—or period—of increased seizures. 

If you care for people with epilepsy, you likely have come across situations like these. What is the first thing you should do in these scenarios?

  1. Refer them to an epilepsy center for further evaluation
  2. Consider changing antiseizure medications
  3. Ask what happened during the seizures and how they or observers responded to them
  4. Consider use of a seizure rescue medication

Any of these actions may be appropriate, but option C should take priority. The first step is to gather more information and assess what the patient and their family/care partners know about seizure first aid and response. As a healthcare professional (HCP), you cannot initiate next steps without having information to put the individual scenario in context. After gathering more information, we need to review seizure first aid and response with each patient and their family. It is not enough to just tell them what to do—we must work together and tailor information to their needs. Seizures happen anywhere, anytime, and people need this information handy. A seizure action plan (SAP) is the perfect way to organize a person’s seizure information and make it easier to share with others.

Tips and Tricks: Give information about seizure first aid (eg, fact sheets, brochures, links to reliable websites) to all people living with epilepsy; introduce the concept of an SAP as early as possible, and have templates for SAPs readily available at your office/clinic.

What is an SAP? Where does it fit?
SAPs started as tools for HCPs to inform schools or other caregivers what to do when a seizure happens. Some people refer to SAPs as “emergency plans,” but this is not the best term to use. Most seizures are not emergencies, and we do not want to send every person with seizures to an emergency room if it is not needed. What we do want is to ensure that every person with seizures knows what to do if they have a seizure, as well as how to recognize seizures that are different from usual and how to prevent seizure emergencies, if possible.

SAPs are no longer just for school settings. They should be used by all people with epilepsy in any setting. Although they can be used as a communication tool, they also can be much more than that. Namely, an SAP is a guide on basic information a person with epilepsy (or their family or care partners) needs to manage their seizures. Remember, they are the ones who ultimately manage their seizures, not you. As their HCP, you can make recommendations, but it is the patient and family who are making the decisions and implementing the recommendations. They are the ones coping with the seizures as they happen.

Tips and Tricks: Ask people to bring their SAP to each visit so you can review it over time. If possible, include this reminder when appointment reminders are sent.

Doesn’t it take too much time to make an SAP?
Some HCPs do not use SAPs because they believe it is too time consuming or that it is not their responsibility. I have found that it is easier to use an SAP if you think about it as a living, breathing document or guide for epilepsy education. Keep in mind that the SAP will be created and adapted over time. It may start out with minimal information, for example, what a seizure looks like and what to do if one occurs (ie, basic first aid). As more is learned about the nature of the seizures (eg, how often they happen or what occurs during them), the plan can be tailored. Over the course of a patient’s care, safety steps may be expanded, instructions on when to call for help may need to be changed, or a rescue therapy may need to be considered.

Each time a new step is added to an SAP, it is a chance to educate the person with epilepsy and their loved ones on what is happening, what to do, and how to do it.

Tips and Tricks: Use the SAP to review what has happened with a person’s seizures since the last visit (eg, how many have occurred, any changes, identifiable triggers). As you learn more about their seizures or changes that have occurred, be sure to raise the topic of rescue therapy options.

Who takes part in the education about and creation of an SAP?
Anyone and everyone can have a role in crafting an SAP and teaching people about epilepsy. It does not even need to start with the healthcare team—people with epilepsy and their families may start the SAP. Templates for SAPs can be found online and given to the person with epilepsy and family to start writing down information and questions; this can then be reviewed with the HCP during subsequent visits. A template can give patients and caregivers some direction to begin thinking about their epilepsy and questions surrounding it. It also can provide opportunities to correct misbeliefs, ensure that people know what kind of seizures they have and what various terminology means, and teach the skills needed to respond to a seizure. This can be done during a routine visit or during virtual visits to individualize and reinforce the information.

Tips and Tricks: If you have additional staff available, have the patient meet with them to provide and reinforce seizure education and plan a time to work on their SAP.

What should be included in an SAP?
SAPs can be as brief or extensive as the person with epilepsy or family needs them to be. If a person has seizures infrequently or has never had a seizure emergency, their plan may be straightforward and include only information about usual seizures, medications, and first aid. A person who has frequent seizures or who has had seizure emergencies will need more in-depth information. For people who have epilepsy and comorbid conditions or disabilities, the plan may need to be expanded with information specific to their comorbidities.

Common components of an SAP include:

  • What happens during a seizure
    • People may not be aware of what happens during or after a seizure, including safety risks. Consequently, they may not be able to describe their seizure to their HCP or may miss important details in their description.
  • The correct name for their seizure type
    • Often, people use vague terms such as “big” or “little” seizures; they also may use terms such as “staring” or “falls.” These words do not reflect a seizure type or tell people what to expect. People with epilepsy should have as much information about their seizure type as their HCP does so they can relay info properly to both their healthcare team and to those around them.
  • How long their seizures last
    • If a person’s awareness or memory is affected during a seizure, they will not know how long the seizure lasts. They also may mix up length of seizure with length of recovery period. If the HCP knows how long a person’s seizure lasts, it should be shared with the patient and family. They will need this information to know if the seizure is ending on its own or if other care is needed.
  • What to do if a seizure happens
    • What is proper seizure first aid for this individual’s seizure type? For example, the appropriate response to a focal impaired awareness seizure is very different from the response to a tonic-clonic seizure. Along with this specific information, patients and caregivers also should be educated on common safety measures that apply to all seizure types.
  • Knowing when a seizure requires more than “basic first aid”
    • A seizure that is different from a typical event or that occurs more often than usual may require a seizure rescue medicine to stop the seizures and prevent an emergency situation. The SAP must include individualized information regarding when to use a rescue therapy and the choice of rescue therapy prescribed. 
  • Knowing when and how to use a rescue medicine
    • It is not enough to write a prescription for a rescue medicine. HCPs must teach patients and families/care partners what the rescue therapy is, how much to use, and how and when to give it. Ideally, a training kit should be used to demonstrate how to give the rescue therapy.
    • Tips and Tricks: If/when a rescue therapy is prescribed, update the SAP to include all relevant information, and do not forget when and how to use it! A prescription is not a substitute for rescue therapy education.
  • How to help someone after a seizure
    • Patients and caregivers (as well as employers, if applicable) should be educated on best practices after a seizure event: Do they need to rest? Are they safe to be alone? How soon can they resume usual activities?

How can using an SAP help people with seizures and their families/care partners?
An SAP can help people:

  • Be prepared
  • Learn the value of observation and recording (eg, writing down what they or others have seen or felt during seizures)
  • Feel encouraged to share information about their seizures
  • Teach others what to do when a seizure happens
  • Recognize when a seizure may be atypical or different from usual
  • Manage potential emergencies outside of a hospital setting
  • Know which seizure medicines are prescribed and how to take them
  • Know when and how to use a seizure rescue medicine
  • Identify safety risks
  • Take steps to be safe

Of most importance, as HCPs, we need to encourage the person with epilepsy to share their SAP with others to inform them what to do in case of a seizure event.

Your Thoughts?
SAPs are so much more than emergency plans. They serve as a tool and resource for the patient and their caregivers to use daily. Importantly, they are a communication and teaching guide that can be used and adapted throughout a patient’s life. Ideally, SAPs help establish a shared understanding of seizure type, identification, and management for everyone involved in a patient’s care. Thinking about SAPs in this manner can reinforce the value they have to people with epilepsy, their families, and the healthcare team. Do you feel confident in your ability to develop and adjust an SAP for your individual patients with epilepsy? Answer the polling question and join the discussion in the comments section.

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How confident do you feel in your ability to develop and adjust an SAP for your individual patients living with epilepsy?

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