SUDEP Action

Making every epilepsy death count
Call us now on 01235 772850

BMJ report points out need to monitor epilepsy risks and keep patients safe

The BMJ Quality Improvement has published a report highlighting the need for the SUDEP and Seizure Safety Check List as a way to address the issue of discussing and monitoring risk with people with epilepsy. The report was authored by Dr Rohit Shankar, SUDEP Action Chief Executive Jane Hanna, Dr Craig Newman among others experts in the field.

The report highlights the development of the SUDEP and Seizure Safety Check List, which was developed to help guide discussion of Sudden Unexpected Death in Epilepsy (SUDEP) for health teams looking after people with epilepsy. Through the use of the checklist within GP surgeries the aim is reduce the number of potentially avoidable epilepsy related deaths. 

The SUDEP and Seizure Check List has been developed through SUDEP Action’s Epilepsy Life Project. The project was made possible by Kt’s Fund which was set up following the sudden Death Katie Hallet. 

The NICE guidelines recommend that people are told of risk, including the risk of SUDEP on or soon after diagnosis, but there is evidence that this does not always happen. A recent editorial in the British Medical Journal highlights premature mortality in epilepsy. It also highlights the lack of screening methods in place to assess and ‘flag up’ the risks for people experiencing seizures.   The SUDEP and Seizure Safety Check List has been used in Cornwall to support improved engagement between Health Professionals and their patients. 
 The BMJ report highlights that tools such as the SUDEP and Seizure Safety Check List could help reduce the public health burden of Epilepsy on the NHS by empowering patients to work with their health care teams to monitor and manage their condition within a primary care setting. 

The report discusses how there is no wide scale intervention or national surveillance of epilepsy mortality. The SUDEP and Seizure Safety Check List is a simple and practical tool that can be used to address this issue. It also comments that the check list can also help give some assurance to bereaved families that every effort was made to reduce risk and prevent a fatality.

Jane Hanna OBE from SUDEP Action comment on the report: “We were thrilled that introducing the Check List into routine practice meant that 80% of people seen by services in Cornwall had their risk assessed and reported this as helpful.  National guidelines introduced in 2004 encouraged discussion, but it has not been happening in many places. We hope that clinicians will like this simple approach that encourages a positive discussion of risk ”.

Follow the link for more information on the SUDEP and Seizure Safety Check List

Click here for the full BMJ report: Keeping patients with epilepsy safe: a surmountable challenge?