SUDEP Action

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SUDEP Action launches latest version tool to help clinicians assess epilepsy risks

SUDEP Action have released Version 2 of their award-winning SUDEP & Seizure Safety Checklist, for clinicians who care for people with epilepsy.

The Checklist, originally launched in 2015, was developed from a research project run by Cornwall Partnership NHS Foundation Trust and funded by SUDEP Action (and Kt’s fund).

This quick to use tool has so far been adopted by over 330 clinicians (working within epilepsy) across the UK; all using it in different settings and with a range of patients, to enhance epilepsy risk discussions and management. 

In 2016, the Checklist team won a HSJ Patient Safety award for ‘Education and Training’, and then a BMJ award for ‘Neurology Team of the Year’. These awards further highlight how the Checklist is recognised by the clinical community as a valuable communication and management tool with their epilepsy patients. If risks are not properly indicated and discussed, it could lead to many unnecessary epilepsy deaths each year in the UK. 

The tool uses key research on epilepsy mortality, risks and SUDEP, to provide clinicians with key topics to discuss during their consultations with patients. Helping the patient see any changes to their epilepsy and what actions might need to be taken to reduce risk. 

Sammy Ashby, Project Coordinator for the Checklist, and PPI lead for the project commented “It is fantastic to see how a tool, which originally started as a set of tick boxes, has now grown into a robust resource, which forms a vital part of risk discussion in many places across the UK. 

Knowing about epilepsy risks and SUDEP is something we know sadly just doesn’t happen as standard across the country – but the Checklist is helping change that. The support of the clinicians using the Checklist has been invaluable; helping us to ensure many more people with epilepsy are now not only receiving risk information, but are also able to then take steps to reduce their risks. And this is something the bereaved families, who support SUDEP Action and our projects, strive to achieve in memory of their loved ones, so that future lives are not lost unnecessarily.” 

Dr Rohit Shankar, Clinical Lead for the Checklist commented that Version 2, “Clinicians often play ‘catch up’ in addressing risks after the harm is done. We are better at ‘treating’ than ‘preventing’ problems. Conditions such as epilepsy, which can last a lifetime, cannot be managed in isolation. Changes in the individual, and the environment they live in, can influence strongly their epilepsy control and in turn, risk of harm. I am delighted to introduce Version 2 of the SUDEP & Safety Checklist, which provides quick, evidenced based communication, of an individual’s key risk factors. In its updated, slicker form, it will continue the good work it is doing. I also commend SUDEP Action, for bringing together a group of world experts to review, input and deliver this Version. Thus, providing users and patients alike, the continued assurance of the Checklist’s high quality and up-to-date evidence - and for passionately campaigning for its successful uptake."

SUDEP Action form part of the Secretariat for the Checklist, ensuring it is updated, and working with clinicians to understand how it is being used, supporting research and further development of the tool. 

This process is supported by leading experts in the field, who form the Checklist Development Group, who welcomed three new members to its ranks this year: 

Professor Mike Kerr - Professor of Learning Disability and Honourary Neuropsychiatrist (Cardiff University)
Doctor Arjune Sen - Consultant Neurologist and BRC Senior Research Fellow in Epileptology 
Kim Morley - the Uk’s only Epilepsy Specialist Midwife

Juliet Ashton, an existing member of the Checklist Development Group, has created a new Epilepsy Service in Norfolk ,which uses the Checklist at the heart of their risk management work, said “It has helped have the conversation about SUDEP, which can be a difficult one to have and for patients to take on board. Once they know it is all about risks and safety and which ones can be modified, it has been a lot easier. One patient feedback that he was not compliant at taking his medication, he had a referral to the Norfolk Medicine Support team and now has an electronic reminder which has lessened his risk substantially as he is now taking his medication on time.


Would you like to be involved?

The Charity are keen to hear from any clinicians who want to know more about the Checklist or who would be interested in being involved in future Checklist projects. Contact us on 

Clinicians who are already users of the Checklist will receive Version 2 automatically (please double check your junk box and contact us should this not be the case). 

If anyone with epilepsy is concerned about their risks, or would like to know more about risk and how to manage them, please see SUDEP Action’s range of information leaflets, and their free award-winning tool EpSMon

Take a look at our Checklist page for more information.