SUDEP and Seizure Safety Checklist Project wins top prize at national medical conference

The SUDEP & Seizure Safety Checklist project was judged as the top poster presentation at the recent International League Against Epilepsy (ILAE) annual scientific meeting in London. Held from the 23-25 September, over 200 leading health professionals attended the conference; where there was a notable increase in the number of research posters and discussions regarding epilepsy risks, patient safety and SUDEP.

During the three day conference, SUDEP Action staff spoke to numerous health professionals, raising awareness of the charity, it services and its three tools, the Epilepsy Deaths Register, EpSMon and the SUDEP and Seizure Safety Checklist.  

The prize was won in the same month that EpSMon, the digital version of the Checklist (for use by people with epilepsy) was shortlisted for a national award by the Health Service Journal. 

Photo: Dr John Paul Leach, President of the ILAE presents prize to representatives from Cornwall NHS Trust and SUDEP Action.

Jane Hanna who represented SUDEP Action during the prize ceremony said: 

“Recognition by the ILAE of the value of the SUDEP and Seizure Safety Checklist is a great help to our promotion of the checklist to health professionals and our overarching aim of supporting doctors and families with the latest research that can help minimise risk.  The development of the checklist is funded by SUDEP Action, through Kt’s fund, which was set up by the family and friends of Katie Hallett, a young nurse, who died of SUDEP.  We owe it to Katie and other young people who have died to ensure the checklist is used to educate about the importance of appropriate management of seizures and well-being and help save lives”  

The Checklist is a tool developed for health professionals to use in clinic to help them and their patients work together to reduce health risks. It uses the latest research into known risks for epilepsy deaths and SUDEP to prompt doctors or nurses to ask a series of questions to the person with epilepsy so that a treatment plan can take account of risk.  

Katie’s mum Liz Hollingdale, who founded KT’s Fund with her husband Bob, commented:

“If EpSMon had been available for Katie to record her seizures and the triggers I truly believe that she would still be with us today. The important information could have been passed to her doctor who could have identified the risks and discussed them further with her using the SUDEP and Seizure Safety Checklist."

"I urge all Epilepsy sufferers to download EpSMon, and for the medical profession to use the SUDEP and Seizure Safety Checklist. The data recorded can be instrumental in saving future lives.”

The Checklist was initially developed following a comprehensive literature review and a 9 year SUDEP population study. Previously unrecognised findings included: 

• Only 20% of people with epilepsy had contact with specialist services in the year prior to death. 
• In the majority of reported deaths there was a noted clinical worsening of seizures in the 3-6 months prior to death. 
• One half had a record of alcohol misuse, and a quarter had been taking drugs to treat depression or anxiety.

The Checklist was introduced into routine practice in Cornwall raising communication of risk in practice from 10% to 80% of patients. The checklist was found to be acceptable to clinicians and patients.  Feedback from 200 patients and carers found that 98% responded positively to the use of the Checklist with people reporting that it helped them think of areas in their epilepsy management that they could change, whilst 2% were neutral.  17% of people monitored received a step-up of care with interventions that would not have happened otherwise. 

The SUDEP and Seizure Safety Checklist was launched nationally in July attracting registrations from over 200 professionals across a range of care settings.  It will be updated annually by an expert development group of clinical leaders from across the UK supported by a secretariat at SUDEP Action. 

The ILAE Poster was designed by Sammy Ashby, Policy Officer at SUDEP Action

Health Professionals can register for the checklist at www.sudep.org/checklist
For more information about EpSMon, the epilepsy self-monitoring app for people with epilepsy visit here.