Thank you for getting involved and taking action this SUDEP Action Day!
Join us and #SpeakUp2SaveLives – together we can make the difference in the fight against SUDEP and epilepsy deaths.
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 (2020) - #SpeakUp2SaveLives
As leaders in SUDEP and epilepsy deaths for over 25 years, SUDEP Action know the topic of SUDEP raises questions and can be worrying for many to think about. But SUDEP Action Day is here to help people take positive steps towards reducing epilepsy risks.
The pandemic has highlighted huge inequalities and we know that SUDEP, epilepsy risks and epilepsy deaths are one of the neglected areas, made worse by COVID-19. Thousands of people with epilepsy, their carers and health workers have report through SUDEP Action’s international research project that:
- epilepsy risks have worsened,
- people with epilepsy are having more trouble accessing the care and services they need
- health professionals are worried their patients are not seeking help if they’re epilepsy is getting worse
- and bereaved families say pain they have lived with for decades has been made worse during 2020
That is why this year we want you to #SpeakUp2SaveLives and encourage vital conversations on epilepsy risks and SUDEP.
Whether you have a little time, or a lot; if you can #SpeakUp2SaveLives you will be raising much needed awareness which could help people with epilepsy around the world live safely and – help save lives!
Together we can #SpeakUp2SaveLives this SUDEP Action Day
How you can #SpeakUp2SaveLives:
In just a few simple actions, you can make a real difference to others this SUDEP Action Day!
Quick ways to #SpeakUp2SaveLives:
1. Like, share or retweet our social media posts on the day to help spread our key messages worldwide. Use the hashtags – #SUDEPActionDay2020 and/or #SpeakUp2SaveLives
- 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 ‘Together we can #SpeakUp2SaveLives this #SUDEPActionDay2020.’
3. Visit the SUDEP Action Day Facebook event page and show your support by clicking ‘attending’
4. Help us to continue to #SpeakUp2SaveLives by holding a #SUDEPActionDay2020 My Way to 5K awareness event. Either on our own, as with a team – can you take on the challenge?
5. Take part in SUDEP Action’s ongoing research into the impact COVID-19 has and is having on people living with epilepsy (and their families) – contribute here.
If you have a little more time to #SpeakUp2SaveLives:
1. Could you share your story or a short quote with us about why knowing about epilepsy risks and SUDEP is so important? Email us at firstname.lastname@example.org.
2. Promote the use of ‘best practice’ tools and resources (for communicating and managing epilepsy risks) within your team. For example in the UK: NHS RightCare Epilepsy Toolkit, SUDEP and Seizure Safety Checklist, EpSMon app, Epilepsy Deaths Register
3. Could you complete one of our #SpeakUp2SaveLives campaign tasks too? Find out more here.
1. Regularly review epilepsy risks to support patients in self-managing 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 with patients who are:
– not attending appointments, collecting prescriptions or taking medications as prescribed
– attending A&E frequently
– experiencing changes to their epilepsy, mood or lifestyle (e.g. pregnancy, going to university, increased stress, new health condition diagnosis)
4. Signpost people with epilepsy, their families and carers to patient organisations who can support their epilepsy and epilepsy risk management
5. Support those bereaved by epilepsy/SUDEP and signpost to bereavement services
You can also learn more at SUDEP Global Conversation which is 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.
On Friday 23rd October 2020, 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.