When you think of epilepsy, you probably think of seizures. You probably don’t associate epilepsy with sudden death. In reality, people with epilepsy are 24 t...
Epilepsy Action Australia
Fighting epilepsy from the frontline
FIELD OF INTEREST
- Health/wellbeing & medical research
- People with a disability, illness or disease
- People experiencing socio-economic disadvantage or vulnerability
When you think of epilepsy, you probably think of seizures. You probably don’t associate epilepsy with sudden death. In reality, people with epilepsy are 24 times more likely to die suddenly. Often this happens in their sleep. It’s called Sudden Unexpected Death in Epilepsy (SUDEP) and more than 170 Australians die every year this way.
Sadly, many of these deaths are preventable. Our experience tells us (built across 70 years of service delivery) that the best way to reduce SUDEP is to support GPs to ask the right questions when they see patients with epilepsy.
The SUDEP and Seizure Safety Checklist provides the framework to get GPs asking the right questions. The Checklist guides GPs through a set of questions that they ask a patient with epilepsy, to work out if there is a higher risk of that person dying prematurely from SUDEP. The questions relate to seizure history, alcohol and substance abuse, medication, sleep, etc. If a risk is identified, the GP and patient can then discuss steps that need to occur to reduce the risk of death.
EAA is seeking the help of Australian Communities Foundation to get the SUDEP Checklist out to Australian GPs, in a way that fits with how GPs work, so that they will use it.
EAA needs a key sponsor who will generously invest $55,000 to make sure that when Australians with epilepsy visit their GP, and they are at risk of SUDEP, that the risk is identified, and the matter is given the attention it deserves. It could be a life-or-death issue for that patient.
How will it work? It’s a bit technical to explain it fully here, but basically GWCT’s investment will embed epilepsy into the algorithm of BetterConsult, a digital questionnaire that patients fill out before arriving at a GP appointment. If the patient’s answers show there is a risk of SUDEP, the system prompts the GP to go through the SUDEP Checklist with that patient. BetterConsult is a tool offered by HealthShare, a digital health company used and trusted by 90% of Australia’s GPs.
Benefit to the doctor of having epilepsy embedded in BetterConsult (including the SUDEP Checklist):
• Awareness of patient’s needs/current situation in advance so better use of the consultation time
• Less time spent on documentation – notes arrive automatically
• Can determine which epilepsy patients are too high risk for their in-person appointment and need to go straight to hospital.
Benefit to the patient from the doctor having epilepsy embedded in BetterConsult (including the SUDEP Checklist):
• More time to think through their epilepsy symptoms so better prepared for consultation
• Enhanced interaction between patient and their healthcare professional
• Doctor asks the right questions so that if the patient it a higher risk of dying prematurely/suddenly, the GP will uncover this and instigate plans (with the patient) to reduce the risk.
Benefit to the epilepsy community overall:
• Opportunity for GPs to ask patients targeted epilepsy questions that uncover potential health risks
• Early identification and treatment resulting in better patient outcome e.g. less frequent seizures
• Efficient and targeted delivery of life-saving materials to GP at the point of care.
Epilepsy Action Australia
Epilepsy Action Australia (EAA) is Australia’s leading provider of clinical services for people with epilepsy, their carers, families and the broader community. EAA works to enhance the lives of those living with the condition.
EAA does this by:
- Giving people with epilepsy free access to experienced nurses who help them manage their condition.
- Educating the public about epilepsy/seizures to reduce the barriers faced by people with the condition.
- Advocating for legislative and policy changes to make lives better for people with epilepsy.
TOTAL BUDGET: $85,000
|UCB Pharma (confirmed)||$30,000|
|Funding gap (unconfirmed)||$55,000|
|Design, development coding, testing and deployment nationally||$32,000|
|Annual licencing fee||$30,000|
|EAA project management and clinical governance||$23,000|
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