Epilepsy Action Australia launches SUDEP and Seizure Safety Checklist
8 years ago, Anny Marrett received a life-changing phone call that no parent should ever 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 SUDEP which, despite being a GP and having a son with epilepsy, I had never heard of.”
What is SUDEP?
SUDEP – Sudden Unexpected Death in Epilepsy – 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 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.”
The SUDEP and Seizure Safety Checklist – an Australian first
To improve knowledge and awareness of SUDEP and epilepsy mortality risk factors with clinicians and people living with epilepsy, Epilepsy Action Australia has launched 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 the UK in 2015 as a collaboration between SUDEP Action and Cornwall Partnership NHS Foundation Trust 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, said, “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 that 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”.
A life-changing tool for doctors and specialists
“The award-winning SUDEP & Seizure Safety Checklist is a tool for clinicians to support conversations on epilepsy risks and SUDEP, helping to monitor their patients’ 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.
All Epilepsy Action Australia specialist epilepsy nurses are trained in using the Checklist. This means people living with epilepsy anywhere in Australia can make an appointment with an Epilepsy Action Australia Registered Nurse to start the discussion about reducing their risks, rather than waiting for a GP visit. 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.
SUDEP occurs in approximately 1 per 1000 people with epilepsy. The risk is lower for children with epilepsy (approximately 1 in every 4,500 children with epilepsy), but it is something to be aware of and discuss with your child’s doctor.
While we don’t yet know the cause, research has identified risk factors that are associated with SUDEP. These include the type and frequencies of seizures (with the number of tonic clonic seizures per year increasing the risk), nocturnal seizures and young adults between the age of 20 and 40 years.
It is important to remember that risk factors are individual for each person and can change over time. The most important step you can take to avoid SUDEP is to try and reduce the number of seizures you have. It imperative that people living with epilepsy understand the critical importance of taking their medications on time and not modifying their prescribed dose without medical supervision. Lifestyle and treatment choices are also very important.
Things you can do to reduce your risk of SUDEP:
- Have regular medical reviews and take your medication regularly and reliably:
– Speak to your doctor before making any changes to your medication.
- Make an appointment to discuss your individual risks with either your doctor or an EAA specialist epilepsy nurse:
– Have this discussion again when you have any significant health or lifestyle changes.
- Avoid excess alcohol consumption and using recreational drugs as they may interfere with your medication:
– If you do, talk to your doctor about it so you can understand the risks.
- Visit the Epilepsy Action Australia website:
– Learn about steps that can be taken to minimise your risk.
– Take an active role in managing your epilepsy by using an EpiDiary and having an up to date Seizure Management Plan
– Complete the short online training ‘Epilepsy: Minimising the Risk’
For more information visit: https://www.epilepsy.org.au/sudep-checklist
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