SUDEP Action

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Best practice epilepsy risk communication tool launches new update

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The latest version of the free, award-winning SUDEP and Seizure Safety Checklist has launched – bringing up-to-date research evidence on epilepsy deaths (including SUDEP) and epilepsy risk to the fingertips of clinicians across the UK. The tool, which originally launched in 2015, supports clinicians in discussing this vital information with their patients, so risks can be identified and positive actions taken where possible to reduce them; in the hope of saving lives.

With 21 epilepsy-related deaths each week in the UK₁, and many of these thought to be potentially avoidable (new research suggests 80% could potentially be prevented₂) – having these vital epilepsy risk conversations regularly with patients has the real potential to stop deaths. Especially as it is known that epilepsy risks can worsen to become fatal in as little as 3-6 months₃, and that over 53% of bereaved families were unaware people could die of epilepsy before their loved one died₄.

Over 1000 clinicians from around the UK have registered to use the Checklist since its launch – ranging from GPs, Epilepsy Specialist Nurses & Neurologist, Learning Disability Nurses, Paramedics, Psychiatrists, Paediatricians and Mental Health Nurses (not an exhaustive list). Using the Checklist helps structure and keep a record of epilepsy risk discussions, and has been proven to reduce risks in people with epilepsy known to be at risk₅.

New features in the Checklist include:

Checklist video image

  • An interactive PDF version – providing quick access to supporting research evidence and discussion prompts
  • A printable version – to support information sharing with people with epilepsy
  • An information video – introducing the Checklist and its patient app EpSMon to new audiences
  • An orientation video – coming soon to support new users with navigating and making best use of the tool.  

The current Checklist is for use with people with epilepsy over 16 years old, and work is ongoing to create a Childrens Checklist so all ages can be supporting in understanding and taking action against epilepsy risks. If you would be interested in supporting this vital work, do get in touch: [email protected].  

The Checklist, EpSMon, the Epilepsy Deaths Register and SUDEP Action’s Specialist Support services were recognised as best practice tools for taking a risk management approach to epilepsy mortality in Feb 2020 by NHS Rightcare; who included the tools in their new Epilepsy Toolkit.

Clinicians can Register for the Checklist here

You can watch the Checklist information video here

Find out more about the EpSMon app – supporting people with epilepsy to monitor their epilepsy risks and wellbeing, or see here for epilepsy risk information

If you know someone who has died due to epilepsy, please see our specialist support services and find out how you can support research to learn lessons from epilepsy deaths through the Epilepsy Deaths Register.


Research References:
1.  Hanna, J et al, Executive summary and recommendations, Epilepsy & Behavior, Volume 103, 106650  

2. Mbvizo, G et al. Epilepsy-Related Deaths Are A Major Public Health Problem: Results From A National Study Using Linked Administrative Health Data To Determine The Burden Of Epilepsy-Related Deaths And The Proportion That Are Potentially Avoidable. Epilepsia 2019;60(S2):S5-S248  

3. Shankar R, Jalihal V, Walker M et al. A community study in Cornwall UK of sudden unexpected death in epilepsy (SUDEP) in a 9-year population sample. Seizure 2014;23(5):382-5.  

4. The Epilepsy Deaths Register, (2020)

5. Shankar, R., Henley, W.H., Boland et al, Decreasing the risk of SUDEP: structured communication of risk factors for premature mortality in people with epilepsy. Eur J Neurol. 2018;