As 2019 almost wraps up, I wanted to reflect on all that we have achieved throughout the year. As always there’s still so much to be done but we’ve had some major triumphs and kicked some pretty big goals this year. I wanted to remind you of just some of these wins and to promise you that we are still clear on our priorities and are forging full speed ahead to our next goals. I like to call this the ‘proof in the pudding’ we’ve worked hard this year to bring some new resources and products to our community and we hope you will agree.
In June, The EPILEPSY NURSE LINE was launched, funded by the Australian Government Department of Health. The Epilepsy Nurse Line is an Australian-first phone and email service to support people living with epilepsy and their families.
This service is available 9am to 5pm seven days in all Australian states and territories on 1300 EPILEPSY (37 45 37) or [email protected] Each call via the Epilepsy Nurse Line is answered by a Registered Nurse with special training in epilepsy management, so callers can trust that the information they receive will be accurate and safe.
This service has been developed specifically to improve health outcomes for people affected by epilepsy. The Epilepsy Nurse Line is especially life changing for people living in rural and remote regions of Australia, who may have limited access to medical professionals trained in epilepsy management.
Our latest website was launched in September to help thousands of Australians living with epilepsy, particularly those with devastating medication resistant types, make informed choices when it comes to medicinal cannabis. www.C4E.com.au is the first evidence-based website to provide the latest published research from Australia and around the world, tools, fact sheets, videos, life stories and other resources related to medicinal cannabis and epilepsy.
The website is for a range of people, including children and their families who live with intractable or medication resistant epilepsy. Adults who have lived for many years with unrelenting seizures that have made it virtually impossible for them to lead a quality life and participate fully in their communities. While some have been able to access medicinal cannabis, many others are still hoping for answers and relief from seizures. This website offers accurate, reliable and evidence-based information for those seeking it.
Medicinal cannabis can be life-changing but it is not a ‘silver bullet’ and it is not advisable for people or carers to consult ‘Doctor Google’ for something so important. Research is constantly evolving and, like any medicine, the right dose, the right quality and the right treatment plan are essential to success.
This website was made possible with the support of nib Foundation, MCG Pharma etc etc (include logos)
SUDEP occurs in approximately 1 per 1000 people with epilepsy, with the risk 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 is 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.
To improve knowledge and awareness of SUDEP and epilepsy mortality risk factors with clinicians and people living with epilepsy, Epilepsy Action Australia launched the SUDEP and Seizure Safety Checklist in October. 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.
You, your families and loved ones are at the heart of Epilepsy Action. We have been listening to you – on social media, in emails and phone calls, and in surveys. We have heard what you are saying. Together, with clear priorities, we can build a better future and that’s why we launched the Purple Project. This project saw myself (and many of the staff) talking in rhymes, highlighting everything and every word beginning with P and pushing it out to the people – you guys! Even the title of this CEO Blog is still playing on those P’s! Whilst it has an element of fun, this project is also very serious. It dictates our priorities and promises to you for a better future. Our commitment to the following:
ROVIDERS: People with epilepsy need better access to specialist health care. We will develop a range of initiatives to improve access. We can do more to ensure that people living with epilepsy have the best possible access which is timely and convenient to a range of skilled providers.
REVENTION: We must tackle epilepsy related deaths, especially those resulting from Sudden Unexpected Death in Epilepsy (SUDEP), and others that are clearly preventable. We will fund and develop healthcare tools and health care practitioner education to help minimise risk.
OSSIBILITIES: There are numerous antiepileptic medications available, but they don’t work for all people or seizure types, and sometimes their side effects are intolerable. We will support research and advocate for new accessible and affordable treatment options, including the newly emerging area of cannabinoid therapeutics.
Everything you have just read, all our new services and products launched in 2019 are part of these 3 P’s and our priorities. We have lots more to come too, 2020 will bring even more promise.
If you haven’t signed that Purple Pledge yet, don’t delay! We want you on this journey with us. We want you to be involved. If you are already a Pledger, please share the gift of purpose over the coming weeks and get your friends, family and others to sign too. Sharing is free, pledging is free, promising to be a part of a better future is free. Together we can do so much more.
I am so excited for what 2020 has in store for us. It will be a lot of hard work and determination, but I am positive that the benefit to you all will be worth it. I want to take this opportunity to wish our community a safe and happy Christmas. I know that seizures don’t always stop during the holidays, but our thoughts are with you and as always, our team are only ever a phone call or email away.