SUDEP Action

Making every epilepsy death count
Call us now on 01235 772850

New American SUDEP Guidelines back anyone with epilepsy being informed about SUDEP

The American Academy of Neurology and American Epilepsy Society have joined forces to produce a new set of guidelines to inform American clinicians of SUDEP, its risk factors and how to discuss this with their patients. The guidelines have been produced by researchers to provide support to clinicians who manage people with epilepsy. 

The objective was to determine incidence rates of SUDEP and identify risk factors. It recognises the importance of risk being discussed with patients and their families using evidence-based information to inform the discussion. They also highlight the importance of working to reduce seizures (particularly Generalised Tonic Clonic Seizures) and help patients achieve seizure freedom where possible in order to reduce SUDEP risk. 

Jane Hanna, CEO of SUDEP Action said:

“SUDEP Action welcomes these guidelines in the US as they further strengthen the need to move from recognition of risk to conversations with patients. SUDEP Action first recommended information on SUDEP in 1996. The UK National Clinical Audit 2002 found most people who died who were at risk were not involved as partners in care. Epilepsy Guidelines in the UK from 2004 flagged the importance of a partnership in care and communication of risk, and began a long journey in the UK to support changes in culture and practice.  Fifteen years on from the publication of the NICE guidelines in the UK, the greatest changes are happening in parts of the country that have adopted and piloted tools and used technology to empower the conversation between clinicians and patients.” 

“The NICE guidelines for the Epilepsy diagnosis and Management in the UK are the broadest of guidelines, and include specific recommendations for special groups inclusive of the aftercare of bereaved families that bear the greatest burden from SUDEP and other epilepsy deaths.”  

Professor Stephen Brown, Chair of Trustees, SUDEP Action also commented:

“The choice of which and how statistics are used and interpreted is important for the families that have experienced the catastrophic life event, especially where words like rare and uncommon are used in public. The bereaved families would also like to see recognition of the public burden of SUDEP. The burden of deaths in the young is staggering. Bereaved families want support from all stakeholders in recognising the importance of communication and engagement. Families and their communities have pump-primed research and development of safety tools, and wish to see further investment in research and development in this area”. 

The burden of epilepsy deaths, which looks past the number of deaths, and instead considers the impact in terms of years of life lost – puts epilepsy deaths in the top ten of all causes of premature mortality. Considering the impact on the families left behind (which is recognised in the NICE guidelines), and what practical steps can be taken to support clinicians in communication SUDEP as part of their overall epilepsy risk communication and management has been a crucial part of the journey. 

A collaboration between SUDEP Action and Cornwall NHS Trust has been working since 2010 to develop and implement a structured, standardised and patient centred approach to communicating risk of SUDEP.  Researchers found 90% of epilepsy patients who had died in Cornwall between 2004 and 2012 had known risk factors but were not engaged with health services.  

The use of a simple evidence-based Checklist supported by a UK Development Group of experts, since 2015, covering known areas of epilepsy risk, (as well as considering overall wellbeing which can impact on a person’s epilepsy such as substance use, mental health, night-time surveillance options and pregnancy), and using this on all patients with epilepsy as part of their annual review resulted in communication rates about SUDEP and epilepsy risks increasing from under 20% to over 80% in Cornwall. Providing a mobile version of the Checklist enabled patients to monitor their overall condition and risks; and was developed in 2015 between existing Checklist partners and Plymouth University and Royal Cornwall Hospitals Trust. This app also provides patients with additional information and support in between medical appointments; empowering them to understand their condition, and when they should discuss any changes with their clinician. Public health data indicates that since this model of risk management was adopted by clinicians, epilepsy deaths have fallen. 

This model of community based, patient centred risk communication and management has been recognised by the NHS and other health bodies as having the potential to overcome barriers in communication of risk, and to empower both clinicians and people living with epilepsy to prevent future deaths. 

To get an overview of SUDEP and epilepsy risks see:

People living with epilepsy 
Clinicians (See also a recent article on SUDEP from leading epilepsy experts, and our free E-Learning module of SUDEP & Seizure Safety)
For further information about the new guidelines click here