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New study: More risk discussions needed with patients


Research compares views of epilepsy professionals in the UK and Norway:  Despite international guidance, SUDEP-related discussions are still not consistently taking place

A new paper looking at epilepsy professionals’ experiences and views relating to SUDEP – and comparing responses in the UK and Norway – has just been published.

SUDEP Action CEO Sammy Ashby was part of the research study group, along with Lance Watkins, Oliver Henning, Paul Bassett, Samuel Tromans and Rohit Shankar.

Epilepsy professionals play a critical role in helping people with epilepsy manage their condition – and minimise the risk of  preventable death, including SUDEP.


This new research shows that, both in the UK and in Norway, this is not routinely taking place and that:

  • Only 20% of UK epilepsy professionals said they discussed SUDEP with ‘all patients’.
  • Only 12% of UK epilepsy professionals indicated that they felt SUDEP should always be discussed with all patients.

The main positive takeaways of the study from a UK perspective, in comparison with Norway, were that UK epilepsy professionals:

  • Generally placed more importance on having SUDEP discussions with patients.
  • Were more likely to discuss SUDEP with new patients and more likely to discuss SUDEP if there was a change in level of risk.
  • Were also more likely to be aware of bereavement services they could signpost to.

The main reasons cited for not discussing SUDEP with patients included ‘low clinical risk’ (50%) and ‘not distressing the patient’ (44%).

Ben Donovan, SUDEP Action Special Projects Coordinator, said: “Whilst this research indicates that epilepsy professionals in the UK place greater importance on SUDEP communication, and are more frequently discussing SUDEP in their clinics than their counterparts in Norway, the figures are still worryingly low.

“Epilepsy professionals need to be supported to feel confident enough to discuss SUDEP with all patients, within the context of risk – rather than avoid these discussions. There needs to be more regular risk-orientated SUDEP discussions between epilepsy professionals and their patients. People with epilepsy need to be provided with information to increase understanding of their own risks at all times, not just from one clinical review to the next.”

You can read the full paper here

Epilepsy professionals' views on sudden unexpected death in epilepsy counselling: A tale of two countries - Watkins - European Journal of Neurology - Wiley Online Library

The SUDEP and Seizure Safety Checklist is a valuable tool for encouraging better discussions between clinicians and patients. Find out more here