Common questions about epilepsy and how to get support
What is epilepsy?
What are the symptoms of epilepsy?
Can I receive support from the NDIS if I have epilepsy?
What does epilepsy support look like?
How can I support someone living with epilepsy?
What is epilepsy?
Epilepsy is a neurological condition where a person has recurring seizures, caused by a temporary disruption of electrical activity in the brain. It can start at any age, though it is more likely to be diagnosed in children and seniors.
Diagnosing epilepsy can take some time, as doctors need to determine whether the seizures are a ‘once off’ or caused by other conditions, such as a brain injury. Once diagnosis has occurred, you can discuss treatment options with your doctor.
What are the symptoms of epilepsy?
Epilepsy causes minor and major seizures, which looks different depending on the part of the brain impacted. Characteristics of epilepsy seizures include:
- Loss of consciousness
- Convulsions (jerking movements)
- Unresponsiveness
- Loss of expression
- Unusual movements, feels or behaviours
- A staring spell
There are different types of seizures, such as Focal Seizures, Focal Onset Seizures, Generalised Tonic-Clonic Seizure, Nocturnal Seizures and Absence seizures.
Can I receive support from the NDIS if I have epilepsy?
We don’t often think of epilepsy as a type of disability, so people may not realise that funding is available from the National Disability Insurance Scheme (NDIS) to help people with epilepsy manage the condition in everyday life.
If your epilepsy has a significant and permanent impact on daily living, you may be eligible for funding from the NDIS for provision of care.
When you apply, you will need to provide evidence of epilepsy (your GP can help you with this) and show how it impacts different areas of your life. You will also need to develop a plan that identifies the supports you need, so you can continue living independently and safely access things like employment, education and community activities.
You can start the application process by calling the NDIA (National Disability Insurance Agency) on 1800 800 110. If you’d like some advice, we’re happy to help. Give us a call on 1300 875 377 for a free consultation on provision of care for children and adults with epilepsy in Australia.
What does epilepsy support look like?
There are lots of different services that can help you manage your epilepsy, so you can enjoy quality of life at home. Epilepsy home care can include things like:
- Developing an Epilepsy Management Plan (a document created with a doctor that helps people understand your type of epilepsy, and how you would like to be supported during and after major seizures)
- Training qualified support workers on how to implement your EMP and your Emergency Medication Management Plan, to provide seizure care at home
- Medication management as part of epilepsy treatment, in collaboration with your doctor and medical team
- Getting help around the house, such as cooking and cleaning
- Transport if you cannot drive, to get you out and about
- Supports that help you work or find a job
- Aids and equipment for daily living
- Installing an alarm if you live alone, so someone can be notified if major seizures occur and emergency assistance is required
- Provision of care for adults and children with epilepsy
- Seizure monitoring and an epilepsy care program to minimise seizure-related risks
How can I support someone living with epilepsy?
Caring for a person with epilepsy is a long-term journey. It’s important to involve them in conversations about their support and treatment, so their management plans is in accordance with their wishes.
Here are some things you can do to help:
- Familiarise yourself with their Epilepsy Management Plan so you are aware of potential risks, and how to provide support when a seizure occurs. Also, learn about epilepsy and the type of seizures your loved one has, so you are more familiar with their condition
- If your loved one has recently been diagnosed with epilepsy, it may lead to some significant life changes, such as the way they work, travel or socialise. Getting support can make a huge difference and help you both stay on top of things
- Encourage them to maintain a normal routine and stay connected with others, as this has great physical and mental health outcomes
- Chat to their doctor if your loved one feels their medication has undesirable side effects and risks
- Find support and make sure you take a break now and then to recharge, as caring for someone with epilepsy can be hard work
- Consider devices that can minimise risks and help someone with epilepsy stay safe, such as a personal alarm
Important note: when someone is having a major seizure, you need to take steps to prevent them from injuring themselves, and stay with them until the seizure has finished. If the seizure lasts for more than five minutes, the person is unresponsive for more than five minutes after the seizure, or a second seizure follows the first, call 000 for emergency help.
Home Caring provides professional support for children and adults with epilepsy, so you can live independently as possible. We are committed to making a positive difference in our client’s lives. For more information about our home care services, please get in touch for a free consultation.
