Thank you for getting involved and taking action this SUDEP Action Day!
Join us and together we can make the difference in the fight against SUDEP and epilepsy deaths.
This year’s theme is #Time2Change. We know many people with epilepsy still aren’t receiving vital epilepsy risks/ SUDEP information, yet people with epilepsy & their families want to be told about SUDEP and epilepsy risks. We also know that many bereaved families were not told about SUDEP and wish that this vital information had been shared.
It is #Time2Change this.
So that every person with epilepsy, their families and health professional are not only aware of these risks but are able to take an active role in discussing, reviewing, and reducing them.
Thank you for your support and all you do to help raise awareness both within your profession and with your patients.
This year's theme (2021) - #Time2Change
As leaders in SUDEP and epilepsy deaths for over 25 years, SUDEP Action know the topic of SUDEP raises questions. But SUDEP Action Day is here to help people take positive steps towards reducing epilepsy risks.
Whether you have a little time, or a lot; if you can do one thing this SUDEP Action day to show that it is #Time2Change how SUDEP & epilepsy risks are managed, you can help people with epilepsy around the world live safely and help save lives!
It’s #Time2Change this SUDEP Action Day
How you can get involved:
In just a few simple actions, you can make a real difference to others this SUDEP Action Day!
Quick ways to show it is you support SUDEP Action Day:
1. Like, share or retweet our social media posts on the day to help spread our key messages worldwide. Use the hashtags – #SUDEPActionDay2021 and/or #Time2Change. SUDEP Action Day messages will be shared via the SUDEP Action social media accounts – making them easy to share online.
Don’t forget to change your social media profile picture to the event logo!
2. Pledge your support by sharing an image on social media of you wearing something orange with the message ‘It’s #Time2Change how we talk and think about #SUDEP and epilepsy risks – that’s why I support #SUDEPActionDay2021.’
3. Visit the SUDEP Action Day Facebook event page and show your support by clicking ‘attending’
4. Help us by holding a #SUDEPActionDay2021 My Way to 5K awareness event. On our own, as with a team – can you take on the challenge?
Got more time and want to get more involved? Check out these ideas:
- Could you share your story or a short quote with us about why knowing about epilepsy risks and SUDEP is so important? If so, email us at firstname.lastname@example.org or private message SUDEP Action on social media.
2. Promote the use of ‘best practice’ tools and resources (for communicating and managing epilepsy risks) within your team. support health teams and service providers to better understand priorities in epilepsy care and key actions to take to improve outcomes and quality of life for those with the condition. For example, in the UK there is the NHS RightCare Epilepsy Toolkit that supports health teams and service providers to better understand priorities in epilepsy care and key actions to take to improve outcomes and quality of life for those with the condition.
3. Could you complete one of our #Time2Change campaign tasks too? Find out more here.
People with epilepsy & their families want to be told about SUDEP and epilepsy risks – so they can make informed choices and take steps to reduce them. Many bereaved families are were not told about SUDEP & wish that this vital information had been shared – it is #Time2Change this.
1. Regularly discuss and review epilepsy risks with your patients to help them self-manage their epilepsy and risks (remember epilepsy risks fluctuate and can worsen to become fatal quickly)
2. Consider using and integrating best practice tools into your epilepsy risks communication/management routines
3. Be aware of and consider additional contact (including face-to-face appointments) with patients who are:
- Signpost people with epilepsy, their families and carers to patient organisations who can support their epilepsy and epilepsy risk management. Support those bereaved by epilepsy/SUDEP and signpost to specialist bereavement services
Keep up to date with key SUDEP research via the SUDEP Global Conversation (an international knowledge repository about SUDEP and epilepsy mortality). Containing research since 2005, it also shares family stories of those who’ve lost loved ones to epilepsy.
You can also receive research updates, free resources and to hear more about SUDEP Action’s other work on tackling epilepsy deaths and providing specialist support for those bereaved by the condition, by registering here.
On Wednesday 20th October 2021, SUDEP Action is teaming-up with the SUDEP Awareness Walk for a special SUDEP Action Day MyWayto5K event.
Walk, run, cycle, scoot, hike, climb, use a wheelchair or push a pram, on the Day, or over a few days – however you choose to reach your 5K, together we will be remembering and raising vital awareness to help save lives.