New research involving a pioneering risk Checklist has shown that structured discussions between clinicians and patients about epilepsy risks can lead to a reduction of risks; which could be potentially lifesaving.

The SUDEP & Seizure Safety Checklist has helped introduce a standardised approach to risk communication and management across clinical settings in Cornwall. The Checklist, currently used by nearly 500 clinicians across the UK, supports clinicians in discussing and monitoring risks with their epilepsy patients. It also includes risk factors associated with epilepsy mortality, including but not restricted to SUDEP, and is supported by the latest research on epilepsy risks, SUDEP, and epilepsy mortality.

This latest research builds on the previous work by SUDEP Action and Cornwall Partnership NHS Foundation Trust (who run the SUDEP & Seizure Safety Checklist project). The Checklist was used during a neurology epilepsy clinic and a clinic specialising in epilepsy and intellectual disability.

    The neurology clinic saw 130 newly diagnosed patients, those re-referred from primary care and those with treatment-resistant epilepsy during a routine follow up. (Royal Cornwall Hospital)

    The specialist clinic saw 129 patients with treatment-resistant epilepsy and moderate to profound intellectual disabilities, and their carers/family members if required. (Cornwall Partnership NHS Foundation Trust)

The Checklist was completed with these patients during November 2015 – March 2016; this was completed one year after the original Checklist appointment to see if the advice and risk management discussed in the original appointment led to a reduction in modifiable risks (risks where actions can be taken to reduce them). 91 patients from the epilepsy clinic and 93 from the specialist clinic took part in the second use of the Checklist.

Findings:

    There was an overall reduction in modifiable risks, specifically in the neurology clinic patients where this was greater

    35% of patients with epilepsy in the neurology clinic and 90% of the ID clinic had epilepsy for over 15 years

    28% of the neurology clinic and 68% of the Intellectual Disabilities clinic patients had generalised seizures

    The SUDEP & Seizure Safety Checklist stimulated open discussion about risk – acting as a catalyst to improve care and outcomes long term, by positively impacting on how people with epilepsy and their clinicians manage risk

Sammy Ashby, SUDEP Action’s Director of Policy & Development and PPI lead for the Checklist said, “This research is so important for people with epilepsy and the clinicians who support them. It demonstrates that by talking openly about all epilepsy risks, positive actions can be taken which can lead to risks being reduced; which ultimately could be lifesaving to some people with epilepsy.

Speaking honestly and positively about risks, and the potentially fatal consequences of not managing these risks, can seem worrying to some. But by using a structured approach, which supports clinicians across clinical settings, and clinicians with varied epilepsy knowledge to have these discussions; a significant difference can be made to the lives of people with epilepsy, helping them better manage and take control of their condition.”

For more information

Clinicians can register for the Checklist here.

For the latest information on epilepsy risks and how to reduce them, check out our information pages and free information leaflets.

Don’t forget the award-winning EpSMon app is also available for free to support people with epilepsy in managing changes to their condition in between appointments.

.