How you can assist someone with epilepsy

A seizure is only one part of what a person with epilepsy needs support for. They may require help to take medication, with daily activities, home modifications, safety needs and appointments, to take part in the community and to recover after a seizure. Seizure management is just one part of what some participants with complex care needs require support within the NDIS, so it is important to know what is normal for a person.

It’s not about responding to and managing each and every seizure as an emergency. Better home epilepsy and seizure support involves knowing what the seizure pattern is for the person and being confident in how to respond should it change.

For example, one person might normally have a seizure with a focal onset that lasts less than 2 minutes, with a post-ictal phase that lasts a number of hours. Another person might be more prone to falling during a seizure and at more risk of injury. They will need different support for their different types of seizures.

Understanding epilepsy and seizures

What is epilepsy?

Epilepsy is a neurological disorder involving recurring seizures. A seizure is a brief disturbance in the brain's electrical function which causes a disturbance to movement, awareness, sensation or behaviour. The effect of a seizure depends on where in the brain the seizure activity originated.

People with epilepsy may have any of the following types of seizure:

• Stiffening, jerking and loss of consciousness, which is called a tonic-clonic seizure
• Absence seizures (blank stare, may lose consciousness)
• Focal seizures (affect one side of the brain; may cause altered awareness or altered movements, feelings, emotions or behaviour)

Focal seizures

Symptom Example: During a focal seizure, the person's attention may suddenly be taken away from the immediate environment and they cease responding to stimuli. They may seem like they're gazing off into the distance, playing with their shirt, or making repetitive movements.This might be an indication a seizure is going to occur. It might be an unusual smell, a visual change, tingling, deja vu, fear or just feeling weird.

Not everyone will have a warning, and therefore the support worker should not assume that any behaviour is seizure related and should use previous experience to guide them.

This is also true of personal triggers. For some people, lack of sleep, a virus, dehydration, forgetting medications and stress can trigger seizures, but triggers can vary from person to person. It is not the role of the support worker to identify what the participant’s triggers are. They should adhere to the person’s support plan and document findings accordingly.

Why individualised support matters

There’s no such thing as one answer to every epileptic seizure.

The person with epilepsy may have more than one type of seizure, and more than one type of response. One seizure may be self-limiting, and the next one may need a dose of emergency medication or an ambulance service as per the person’s plan.

That is why an individual epilepsy management support plan is so essential. The NDIS Commission has, in its epilepsy and seizure support skills descriptor, recommended that the plan is managed by a health professional and is an updated, clear and easily understood plan, detailing an individual’s seizure types, frequency and pattern, triggers, premonitory symptoms, monitoring and recording needs, medication administration instructions and emergency procedures.

An effective plan should enable an employee to answer questions such as:

• Are there symptoms before or after the seizure?
• What does the worker do for each type of seizure?
• When should emergency medication be used?
• When should 000 be called?
• What needs to be recorded?
• What kind of assistance does the individual generally require during the healing process?

The plan can also be adapted according to the participant’s choice, communication and participation in the planning of their care. Information can be provided to others involved with the participant’s care or to a support person with their consent if required.

What support workers need to know

Supporting a participant who is at high risk of seizures

The NDIS Commission’s skill descriptor provides that workers supporting a participant who is at high risk of seizures should be provided with training related to the individual, including knowledge of the individual’s seizure types/patterns, triggers, risks and relevant seizure support plan and equipment/technology. The training should be provided by an appropriately qualified health practitioner, or other individual who meets the skills descriptor.

Before providing support, workers should know:

• the person’s seizure types and usual presentation
• known triggers and warning signs
• the current seizure management plan
• relevant first aid requirements
• emergency procedures
• any rescue medication instructions and how to use them
• the use of seizure monitoring equipment, if indicated
• what the person needs after a seizure
• recording and reporting requirements
• when to call a treating healthcare provider or 000.

Education and training should not be seen as something that has been completed. It is the provider’s responsibility to make sure that workers retain the necessary skills and knowledge to deliver support safely and to record and review training in an appropriate way.

What to do during a seizure

Watching a seizure for the first time can be very frightening, but if the worker does not get scared, they can focus on the safety of the participant and the response plan.

Seizure first aid

Seizure activity: Remain with the individual, prevent injury, remove objects that may cause injury and position the individual somewhere safe and place soft objects (pillow) under their head.DO NOT restrain the individual, DO NOT put anything in their mouth. They cannot choke on his or her tongue, and you may break a tooth by placing something in their mouth.Do not move the person unless they are in danger. If possible, and it is safe and careful to do so, roll the person on to their side to help prevent choking if they vomit.

The Seizure Action Plan or seizure management plan of the individual should indicate any participant-specific guidelines for the position of the individual, how to monitor the individual, medication, and escalation.

When emergency help may be needed

Seek emergency care (call 000) if:

If there is a seizure longer than five minutes, a second seizure right after the first, if the person takes a long time to come out of the seizure, if there has been an injury, the person has a seizure in water or it is their first suspected seizure.

The individual plan of a participant might require extra instructions relevant to his/her medical history. It is better not to try to memorise or invent the threshold of the emergency in a stressful situation. Workers are to follow the plan and request assistance whenever needed.

Emergency medication and rescue meds

If rescue medication is used as part of a participant’s support, workers require a specific action plan detailing when it should be given, how it should be given, what needs to be monitored afterwards and at what point emergency services should be called.

It describes knowledge and skills relevant to medication administration, including medication to be administered during or following a seizure.

Families should confirm that:

• the medication is prescribed for the participant
• the instructions are current
• the medication is available when required
• workers have received the relevant training
• competency has been assessed appropriately
• workers know what to monitor after administration
• the emergency response is clearly documented.

Support workers should never alter a person’s medication on their own or administer medication differently than stated on the prescribed instructions. Contact the participant’s doctor or treating doctors if the frequency of their seizures increases or becomes significantly different.

Supporting the person after a seizure

The seizure may end before the person does.

At a later time, someone can be confused, sleepy, feeling weak or sore, anxious, or get a headache. Some people will be able to sleep it off and some may need reassurance and help as they become confused.

Support should be calm and respectful.

Allow the person to come around and do not cross-examine unnecessarily while they are disoriented.

Dignity still counts at this stage. The chance that the person taking part has been incontinent, may be partly undressed, or may be feeling ashamed of the incident needs to be treated with sensitivity and an element of good support.

Workers should keep observing the participant in accordance with their plan and get medical attention if the participant’s recovery is ‘not usual’ or they have any of the concerning signs and symptoms.

Keeping useful seizure records

A seizure diary is more than just paperwork. Keeping regular records can help the team caring for the person get a picture of if and how their seizure pattern is changing, and what they do before, during and after a seizure.

A useful record may include:

• the date and time the seizure started
• how long it lasted
• what the seizure looked like
• what the person was doing beforehand
• possible triggers or contributing factors
• any warning signs the person reported
• injuries or breathing concerns
• medication given, if applicable
• how the person recovered
• time it took to restore them to normal.

Some records may show that an individual is more likely to have a seizure after a night of bad sleep, are sick, have not taken their medicine, or at a specific time of day.

The optimal system is one that the participant, family and worker can implement and share with the relevant treating healthcare practitioner as needed.

Making the home safer

Bathroom safety

Water is an additional serious hazard for a person with seizures. The participant’s occupational therapist and clinical team can advise on the person’s bathing needs, supervision and equipment.

Bedrooms and furniture

If a person is unsteady when they are walking and is prone to falling, the furniture should be taken into consideration. The hazards and the height of furniture could be looked at and reviewing them could prevent a fall.

Cooking

Some individuals will require varying degrees of support. For example, some people can cook with only a few adjustments, whilst others need supervision or adaptations when using hot surfaces or appliances.

Seizure monitoring

Medical devices and seizure detection technology may be appropriate for some people, such as where seizures occur at night. The NDIS Commission skills descriptor includes the use of seizure monitors and other wearable technology such as smart watches, sleep activity monitors and other monitoring devices.

These devices do not capture all seizures, and are not intended to replace clinical advice and an agreed support arrangement. Families are advised to consult with the participant as to whether any specific device is suitable for them before using the device.

Supporting independence, not fear

Safety is important – but coping with epilepsy should not mean everything in your life becomes a list of things you cannot do.

A level of restriction or extra supervision may be required. Alternatively, a lesser change can control the risk without loss of the activity.

For instance, the suitable course of action could also be observation at some point, occupational therapy advice, an environmental modification, or a change within the way an activity is performed.

This may assist community adjustment without compromising choice and independence for the participant.

Epilepsy can impact beyond your body. Having a seizure in public, modifications to your employment or studies, or getting extra aid from others can impact your mindset and also self-confidence.

Medication, routines and lifestyle factors

Take your medications, write down everything! Adhere to your prescription schedule. Do not skip doses or change your dose of any of your medication without first talking to your doctor.Adjustments in lifestyle such as staying hydrated or having rest might also be valuable.

Helpful lifestyle advice may be different for everyone.

Stressors can change the seizure pattern for some people. Stress is not a trigger for everyone. A journal is useful to the participant as well as the treatment team in noting what appears to be important for that person.

The person you support may also have treatments other than medication. A healthcare professional may talk about surgery, vagus nerve stimulation or a ketogenic diet, based on the person’s type of epilepsy and other individual factors. Such interventions are clinical discussions and shouldn’t be brought into by a support worker.

Driving and community participation

There are different requirements for driving depending on a person’s individual circumstances and the conditions of their Australian driver’s licence.

Seek advice from your doctor and licensing authority about your situation. Your licence could be temporarily suspended following a seizure. You might need to undergo a health assessment periodically if you have epilepsy.

Community participation may also mean avoiding fatigue, lining up medication timing, avoiding personal triggers or having friends and family available to provide support. These adjustments should enable the participant to work towards their goals, not put more restrictions on them.

Some people may opt for a medical bracelet or other form of medical ID to inform rescuers that they have epilepsy.

Recognising changes in seizure patterns

For example, one person, who typically experiences a single mild seizure every few weeks, may suddenly have many within a day. A person who generally has a mild seizure may have one that lasts much longer. Yet another person may be far more confused than normal after a seizure.

Workers should document events and escalate per the person’s plan. More frequent seizures or abnormal patterns may need to be assessed by medical staff. Healthdirect suggests consulting a doctor if the person has more seizures than usual.

If a worker has concerns about a change, their role is to observe, record and follow the plan.

SUDEP and overnight support

Sudden unexpected death in epilepsy (SUDEP) is rare and life-threatening. Families might wish to ask the person’s neurologist about their individual risk rather than relying on general information or advertising made about monitoring products.

Risks include uncontrolled seizures and some types of seizures when sleeping. Good seizure control is important and full review of individual cases may be necessary.

The decision to require overnight monitoring may also be impacted by seizures that occur at night in some individuals. The decision to have overnight support is specific to the individual and their individual needs, seizure type, and clinical advice.

A seizure alert device may generate a warning in certain situations but cannot be relied upon to detect all seizures. If monitoring is used, it should be part of the person’s broader package of support.

Common mistakes to avoid

Not all myths about seizures are fresh. Some are repetitive but inaccurate advice.

Make every seizure an emergency: Not all seizures are the same. If you see one, you can’t assume it should be an emergency; it depends on the person and their plan.

If the person appears to recover immediately: The person may be confused, sore, distressed, or tired after the seizure has stopped.

Change of medication without medical approval: If the number of seizures increases, this should be discussed with the person’s doctor or treatment team. Do not change medication without medical approval.

Applying epilepsy as a blanket rule: For each activity, risk management needs to be participant-specific. Just because someone has epilepsy does not tell us what they can and cannot safely do.

Questions families should ask a provider

Before scheduling epilepsy and seizure support at home, families may wish to inquire:

• What epilepsy-specific training have the workers completed?
• How is competency assessed?
• Will workers read and follow the participant’s seizure plan?
• How is this documented and shared?
• Is there training if rescue medication is given?
• How does the provider manage worker handovers?
• What if my regular worker is not available?
• Does the provider have the resources to provide overnight support when needed?
• What does the provider need from the participant’s medical provider?

These can assist families to know if an organisation has arrangements in place for individualised epilepsy support rather than solely generalised awareness.

Building support around the person

Good quality, home-based epilepsy and seizure support is not just a matter of taking on a worker who has seen a seizure. It is about developing support that integrates into the person’s life.

The worker should know how the person’s seizures usually occur, what might happen before a seizure, what should be done in a seizure and what is typical recovery. They should be aware of what the existing plan is, know what the worker’s role is and know when the seizure is abnormal.

Families can assist by providing key information that is accurate, up-to-date and available. Participants must have input into how they are supported, including how workers communicate, what information is provided and which routines are important.

The NDIS Commission guidance states that: “The NDIS Commission expects that participants are involved in the development of a plan for epilepsy management, and that the support plan considers each participant’s needs, goals, and support needs and risks.”

Epilepsy Support Beyond Seizure Management

Good support goes beyond responding to seizures! It helps the participant to get sleep well, work, prepare and cook good food, to be with other people and to participate in their local community as independently and safely as possible.

Epilepsy can be a chapter in your life without being the whole story.

Support Network can support families to look at support choices for people needing support with epilepsy and seizures at home. Prior to services commencing, families should discuss the participant’s individual needs, current plan and support requirements with the provider.

This article is for general information only. Do not provide medication for seizures to anyone else. Treatment for the seizure, medication, first aid and safety advice should be specific to the individual and in line with your participant’s plan and advice from your participant’s treating health professional.