Participant Support Procedures > Epilepsy
Authorised by Day Programs Manager
Issue Date: 15 May 2012
People living with epilepsy usually have seizures at unpredictable times. Because epilepsy varies so much between individuals, it is crucial that everyone understands how to support the person.
This information can be usefully contained in an Epilepsy Management Plan (EMP) that is current, accurate and easy to understand, and developed by the person or people who have the most knowledge and experience of that person’s epilepsy and seizures. Encouraging the person with epilepsy to be part of this process is very important.
To best support the person, it is recommended that the main support people complete as much of the Epilepsy Management Plan as possible prior to meeting with the doctor. It is essential that the treating doctor review and sign the EMP.
Date to review the plan
The plan should be reviewed annually or revised more frequently if there is a change of circumstances or information that should be recorded in the plan.
1. General information
The plan should clearly outline the location of the person’s medication records, emergency medication plan, seizure records and general support needs and procedures.
2. Has Emergency Epilepsy medication been prescribed?
If emergency medication has been prescribed for prolonged seizures or clusters, an Emergency Medication Management Plan should be completed and must be either attached or the location noted in the Epilepsy Management Plan.
The Epilepsy Foundation of Victoria has Management Plans available upon request and can provide training for people required to administer emergency medication.
If you are trained in emergency person specific medication administration1 please refer to the Medication Authority or Emergency Medication Plan.
3. My seizures are triggered by
It is not always possible to know whether there are seizure triggers for an individual however, it is useful to know if there are any recognised triggers that may provoke seizures for this person (do not include information about this if you are uncertain).
4. Behaviour that may indicate a seizure could occur
Some people may display certain behaviours minutes, hours or sometimes days prior to a seizure event. In some cases one can easily observe the pattern of behaviours and other times it may not be so obvious. It is important to give an accurate description of the behaviour and mention if possible how long the behaviour will occur prior to the seizure event. Some more commonly reported behaviours include pacing, feeling sad, poor appetite, irritability or a general feeling of unsettledness.
5. Seizure description and seizure support
In the Description part of the table ensure that you describe what the seizure looks like before, during and after – never just name a seizure as ‘absence’ without a brief description of what the seizure looks like.
Not everyone who reads the plan may understand this language. Always discuss with the support team and agree on a description that accurately describes what the person’s seizures look like.
It is useful to leave some space in each description box for the treating doctor to write additional notes.
Document the typical duration and frequency for each different seizure type. If a type of seizure has not occurred within 12 months, state the date the last seizure occurred in the frequency column.
Document the seizure duration in seconds or minutes and the seizure frequency in days, months or years for each type of seizure.
If the emergency medication prescribed box is ticked “yes”, then the accompanying Emergency Medication Plan should only be implemented by trained staff,1 otherwise call the ambulance according to what is stated in the when to call an ambulance column.
If no ambulance needs to be called for a certain type of seizure, for example absence seizures, then state not applicable.
6. How I want to be supported during a seizure
Give clear, step-by-step instructions about any specific support requirements in addition to seizure first aid.
7. Specific post-seizure support
As recovery from seizures varies greatly, state clearly what needs to be done to assist the person during the recovery phase and how long they should be supervised after the seizure. State how a support person would know when the person has regained their usual awareness and how long this typically takes.
8. Risk /Safety Alerts
Everyone, not just those with epilepsy, face risks in the home and in the community. This section should be filled in to alert support staff of potential risks related to a person’s epilepsy.
For each risk a supporting strategy needs to be documented so that the support person is not only aware of the risk, but what to do to reduce it happening.
Do I need additional overnight support?
For some people, additional overnight support may include use of low bed, firmer pillow, or staff monitoring to mention a few strategies. A thorough assessment should be completed in consultation with the treating doctor to evaluate what, if any additional overnight supports are needed.
9. Endorsement by the treating doctor
Name and telephone number of the person’s treating doctor is to be included in the plan to allow emergency services and hospital staff to consult when necessary. The doctor should review the plan and endorse it with their signature.
10. This plan has been compiled by
Many people may contribute to the persons plan and may give input when the plan is due for review. Nominate a plan coordinator who can take responsibility for the maintenance and review of the plan. Individuals or families needing support to develop an EMP can contact the Epilepsy Foundation of Victoria.
ˡ Emergency Medications can only be administered by staff who have completed person specific training.
Training in emergency medication and general epilepsy can be provided by the Epilepsy Foundation of Victoria.