SUDEP Action

Making every epilepsy death count
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Partnership team shortlisted for the BMJ Awards 2019

BMJ

 

We are delighted to announce that SUDEP Action and its partnership of researchers and clinicians, have been shortlisted for the Education Team of the Year at this year’s British Medical Journal (BMJ) Awards 2019.

The award recognises the success of two epilepsy safety tools; the digital app EpSMon, and the clinician tool, the SUDEP & Seizure Safety Checklist. Since their launch in 2015 they have shown that by using these tools to communicate and manage epilepsy risks, that these risks have been reduced among those living with the condition.

A recent Public Health England report (2018) highlighted the shocking statistics concerning neurological deaths (including epilepsy) between 2001 -2015, had increased by 39%. Nearly half (49%) of the epilepsy deaths recorded, were untimely deaths. With 21 epilepsy-related deaths each week in the UK; action is needed to both raise awareness of the potentially fatal risks linked with the condition, and also to help people with epilepsy to reduce them and improve their wellbeing.

Recommendations from the clinical (NICE) guidelines from 2004, state that it is imperative to discuss and educate the patient of the risk factors, particularly surrounding death, relating to their epilepsy. However, communicating serious information like this, is not easy, if it happens at all.

With over 600,000 people in the UK with epilepsy, there are a lot of people that are impacted by the success of such a conversation.

Empowering both the patient and clinician with the right information and tools are key to assist with discussions – such as EpSMon and the Checklist.

The SUDEP & Seizure Safety Checklist is currently used by over 650 clinicians nationwide, supports health professionals in discussing and monitoring risks with their epilepsy patients. Discussion about patient’s epilepsy and wellbeing, covering risk factors associated with epilepsy mortality. Fortified by the latest research on epilepsy risks, SUDEP, and epilepsy mortality, findings have already shown that these discussions are potentially lifesaving.

EpSMon is an epilepsy self-monitor app which encourages people to actively monitor and take action against epilepsy risks in between appointments. Based on the information and research within the Checklist, EpSMon enables users to assess their epilepsy and overall wellbeing periodically, calculating and informing them of when a clinical review may be appropriate. Research on the app has shown that 44% of users hadn’t previously had epilepsy risk discussions with their clinician, despite the app showing they were experiencing known epilepsy mortality risks.  

The BMJ Awards are the UK’s leading medical awards, recognising the incredible work that healthcare teams across the country do every day. The awards ceremony will take place on 24 April 2019 at Park Plaza Westminster Bridge, London.

If you would like more information about how to reduce epilepsy risks, visit: www.sudep.org or call 01235 772850.