Health professionals

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 #mysafetymatters. 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.

We need to encourage #mysafetymatters.
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 (2023) - #mysafetymatters

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 we need to support #mysafetymatters how SUDEP & epilepsy risks are managed, you can help people with epilepsy around the world live safely and  help save lives!

With information there’s conversation. Let’s talk  #mysafetymatters 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 – #SUDEPActionDay2023 and/or #mysafetymatters. 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 ‘#mysafetymatters and think about how we talk about #SUDEP and epilepsy risks – that’s why I support #SUDEPActionDay2023

3. Visit the SUDEP Action Day and show your support by clicking ‘attending’

4. Help us by holding a #SUDEPActionDay2023 My Way to 5K awareness event. On your own or with a team – can you take on the challenge? 

Got more time and want to get more involved? Check out these ideas:

1. 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 [email protected] 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 #mysafetymatters campaign tasks too? Find out more here.

Top Tips

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 – let’s #mysafetymatters.

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:

4. 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.

Don’t forget, you can take part in a special MyWayto5K event throughout October to mark SUDEP Action Day.

Walk, run, cycle, scoot, hike, climb, on the Day, or over a few days in October to mark the day – however you choose to reach your 5K, together we will be remembering and raising vital awareness to help save lives.

Wear Orange

Wear your SUDEP Action t-shirt with our iron-on SUDEP Action Day transfer to show your support!

Wear your SUDEP Action Pin Badge

Pop on your SUDEP Action Pin Badge and wear with pride to promote SUDEP Action Day on the 19th October 2022!

Display the SUDEP Action Day Poster

Take a look at this years’ SUDEP Action Day poster and put it on display to spread the word!