Epilepsy is a challenging diagnosis to receive however, it’s also a relatively common one, so it’s important to recognise that you are not alone.
Epilepsy is a brain disorder that can cause recurring seizures. These seizures disrupt the normal operation of your brain and can impact your relationships, work and other areas of your life.
In Australia, around 250,000 people are currently diagnosed with epilepsy, according to Epilepsy Action Australia, and the World Health Organisation indicates that it’s one of the most common neurological disorders globally.
Many people with epilepsy are able to lead full and productive lives, with research by Monash University indicating that two in three people with epilepsy in Australia are able to control their seizures with medication.
Nevertheless, if you are living with epilepsy, it’s important to consider preparing an epilepsy management plan in the event of a seizure. Here’s how to get started and where you can find help.
What is an epilepsy management plan?
Jess King, complex support team lead at Hireup, explains that personalised epilepsy management plans are crucial because epilepsy and seizures present differently in each individual.
“An epilepsy management plan provides essential, individualised information to help others understand your epilepsy and how you want to be supported during and after a seizure,” says Jess.
“It can be used in a number of settings to recognise the signs a seizure is occurring, reduce the risk of injury - to yourself and others - and minimise the impact of a seizure on your daily life.”
The most important thing to consider is how you want others to understand your epilepsy, and how you want to be supported during and after a seizure.
Some of the other things to consider include the types of seizures you experience, any known triggers or behavioural indications that a seizure could occur, and any emergency procedures that need to be followed.
It’s also important to think through high risk areas that should be identified and have mitigation strategies in place, like at work, during exercise or when on holiday.
Who can help me develop an epilepsy management plan?
There are a number of places that can provide help developing a plan, with epilepsy support organisations boasting a wealth of experience in the area.
The Epilepsy Foundation is a great place to start and has a terrific epilepsy management plan template to get the ball rolling.
It’s also important to involve your doctor in the development of your plan, so once you have given some thought to the support you’d like to receive, be sure to book an appointment to complete your plan.
“You should complete your epilepsy management plan with your treating doctor, like your neurologist or GP, and you might ask others involved in your care like family or friends to support you with this process,” says Jess.
“This is because your treating doctor must endorse your epilepsy management plan and can provide any authorisations required to secure emergency medications.”
What do I do with my epilepsy management plan?
Your epilepsy management plan should be shared with anyone involved in your support, such as family, school staff, work colleagues and support workers. This provides them with the information they need to support you how you want to be supported during and after a seizure.
“You should share a copy of your plan with Hireup as well,” says Jess.
“We will upload it to your profile and share it with workers who have accepted a booking with you via a secure link in your support plan.
“If there are no future bookings in place, the worker will no longer have access to view the plan.”
You should keep your epilepsy management plan where it can be easily accessed, whether that’s at home, school or work.
The more accessible copies you have around you in your normal settings, the better chance you have of being supported how you would like.
“You might keep a copy of your plan in your bag, or you may have it accessible on your phone and shared with others that way,” says Jess.
How often should I update my epilepsy management plan?
It’s recommended that you update your plan every 12 months.
If there are any changes to your diagnosis or treatment, or other circumstances like living arrangements, it’s recommended that your plan is reviewed by your treating doctor earlier.
“This ensures you receive the safest, most effective support in the event of a seizure,” says Jess.
What if I’m having difficulty preparing a plan?
Epilepsy support organisations are wonderful resources to help prepare your epilepsy management plan.
However, if another disability makes it difficult to contact and coordinate with a support organisation, the National Disability Insurance Scheme (NDIS) may offer some help.
The NDIS doesn’t provide assistance to create epilepsy management plans, but can provide a support coordinator for people who have difficulty linking with an epilepsy support organisation.
It’s worth noting that the NDIS also funds support for people who have another disability that impairs their ability to manage their epilepsy.
These supports can help you manage your epilepsy if you can’t do this on your own, with options such as assistive technology - like seizure monitors - or a support worker or nurse to monitor your seizures.
Remember, most people with epilepsy live a full life. The key is managing it and preparing an epilepsy management plan is an important part of that.
If you would like to learn more about Hireup's approach to complex support, visit our website.
