PRESS RELEASE: Sudden Unexpected Death in Epilepsy (SUDEP)

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Heartbroken families applaud launch of new clinical tool to
prevent premature epilepsy deaths

Sudden Unexpected Death in Epilepsy (SUDEP) Action Day, October 23

8 years ago, Anny Marrett received a phone call that no parent should have to experience.

“When Roy and I got a call on Monday morning that George had not turned up for work, we both knew without saying a word that a day we had dreaded had arrived. Our beloved son George, who had lived with epilepsy since he was 14, had passed away in his sleep. He was two months short of his 30th birthday,” said Anny. “I later found out this was due to Sudden Unexpected Death in Epilepsy which, despite being a GP and having a son with epilepsy, I had never heard of.”

Sudden Unexpected Death in Epilepsy (SUDEP) is when a person with epilepsy dies suddenly and prematurely, and no reason for death is found. Currently there is very little information or awareness of SUDEP, yet more people die from SUDEP in Australia than from Sudden Infant Death Syndrome (SIDS). Tragically, it is estimated that there are 300 epilepsy-related deaths each year in Australia with up to half as a result of SUDEP. Research suggests that many of these deaths could be prevented.

“As the name ‘sudden unexpected death in epilepsy’ suggests, the tragic nature of SUDEP is that it is unexpected and unexplained, meaning that there is no apparent cause of death,” says Carol Ireland, CEO of Epilepsy Action Australia (EAA), the largest provider of services to people living with epilepsy. “There may be obvious signs a seizure has happened, though not always. In most cases, the person is found to have passed away in bed while they were sleeping.”

“The common thing I hear from grieving families is ‘Why didn’t we know about the risks of this?’” continued Ms Ireland. “Reducing risk factors associated with SUDEP and epilepsy mortality can save lives and give patients with epilepsy peace of mind. The conversation about risk between doctor and patients with epilepsy needs to be accepted as routine just as it is with other chronic conditions.”

Australian first – SUDEP and Seizure Safety Checklist

To improve knowledge and awareness of SUDEP and epilepsy mortality risk factors with clinicians and people living with epilepsy, Epilepsy Action Australia is launching the SUDEP and Seizure Safety Checklist. The Checklist is the first clinical tool in Australia to assist neurologists, GPs and other health practitioners to discuss and monitor risk factors with their patients aged over 16 years. It is used in a 10-minute consultation that provides the latest evidence on risk factors for premature mortality in epilepsy.

The SUDEP and Seizure Safety Checklist was originally developed in Cornwall (UK) as a collaboration between SUDEP Action and Cornwall Partnership NHS Foundation Trust in 2015 and is supported by leading experts. Partnership between Epilepsy Action Australia and SUDEP Action has enabled this Checklist to be made available in Australia.

Jane Hanna, OBE and SUDEP Action CEO, stated that ‘we are thrilled to be showing how this UK and Australian partnership, now in its third year, has brought value to the SUDEP and Seizure Safety Checklist and to the people who use it. It’s through this strong shared motivation to work together, we will hopefully avoid many sudden, and preventable deaths’.

Of the partnership Ms Ireland added ‘by combining the strengths of both leading organisations we are ensuring healthcare professionals and families across Australia have the most recent and reliable advice about reducing epilepsy related risks’.

“The award-winning SUDEP & Seizure Safety Checklist is a tool for clinicians to support conversations on epilepsy risks and SUDEP, helping to monitor their patient’s overall wellbeing and changes in risk factors,” said Ms Ireland. “We are also encouraging patients to alert their clinicians about the Checklist, as going through it can provide them with more knowledge around seizure risk management and hopefully some peace of mind. This is such a positive progression.”

Anny agrees, saying “As both a mother and a GP I applaud the efforts by Epilepsy Action Australia to better inform the community about SUDEP and epilepsy mortality risks. This Checklist is a simple but effective way to reduce risk and ultimately save lives.”

The Checklist is a free, easy to use, evidence-based tool which can be downloaded through the Epilepsy Action Australia website by any health practitioner registered with the Australian Health Practitioner Regulation Agency (AHPRA).

“Safety for people living with epilepsy should be of paramount importance to medical and health professionals. There is a higher than necessary incidence of injury and death secondary to seizures and epilepsy. I encourage all treating practitioners to have a discussion about risk with patients. The SUDEP and Seizure Safety Checklist is a tool that can help guide this potentially lifesaving discussion” says Professor Terry O’Brien, President of the Epilepsy Society of Australia and Van Cleef Roet Professor of Medicine (Neurology).

The Epilepsy Action Australia website offers a free short training video for clinicians intending to use the Checklist. There are also safety factsheets that can be downloaded and handed to patients.

In time for SUDEP Action Day 2019 on October 23, all Epilepsy Action Australia specialist epilepsy nurses will be trained in using the Checklist. This means people living with epilepsy anywhere in Australia don’t have to wait for a GP visit, they can make an appointment with an Epilepsy Action Australia Registered Nurse to start the discussion about reducing their risks. Epilepsy Action Australia will be the only epilepsy organisation in Australia to offer this life saving service for Australians over 16 years living with epilepsy.

“If you live with epilepsy, ask your doctor about the SUDEP and Seizure Safety Checklist. You can download an info sheet from the website to give to your doctor, or simply email or call to make an appointment with one of our specialist epilepsy nurses. Having regular conversations about epilepsy-related risks can help people living with epilepsy take positive actions that could save lives,” finished Ms Ireland.

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