SUDEP Action

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Urgent consensus call for enhanced epilepsy patient services to reduce risk



SUDEP Action has supported a consensus statement released today, calling for improved service provisions for people with epilepsy during the impact of COVID-19 pandemic.

21 people every week in the UK die from an epilepsy related death, and we know from research that nearly half of these deaths are potentially avoidable with better access to services and knowledge of risks. With this in mind, Epilepsy Action invited SUDEP Action and leading experts to consider priorities for resumption of epilepsy services. Epilepsy Action, SUDEP Action, ILAE, ESNA, have come together in a consensus statement, and this letter is a request that epilepsy healthcare services and facilities, must not ‘produce undue risk for people with epilepsy’, a priority that SUDEP Action considered fundamental during a time of pandemic.

You can read the letter in full here.

This builds on the call by SUDEP Action for urgent action in May 2020, when we expressed significant concerns to the Health and Social Care Select Committee, about the impact the COVID-19 pandemic is having on people with epilepsy, epilepsy services and those bereaved by the condition. Urgent action must be taken to prevent increasing epilepsy deaths, and to better support the bereaved both during the pandemic and beyond. 

Read our submission here.

The Neurological Alliance published survey findings nearly a year ago, July 2019, highlighting that people with neurological conditions were already facing long waiting times, poor access to specialists, without the effects of lockdown and diversion of services. SUDEP Action has since worked on the mortality section in the NHS RightCare Epilepsy Toolkit - it is this section that  prioritised in the consensus statement, in the first phase of resumed normal services.

Launched in February 2020, the Epilepsy Toolkit supports health teams and service providers to better understand priorities in epilepsy care and key actions to take to improve outcomes and quality of life for those with the condition.

For people with epilepsy, how you access your healthcare team and services may look very different now. Also in early May, SUDEP Action released the impact research surveys (for people with epilepsy, health professionals and those bereaved by epilepsy) to help gain a better understanding of those changes, and to help get support to those who need it.

People with epilepsy are at increased risk of dying suddenly and prematurely – causing significant grief and trauma throughout communities. For those sadly bereaved by epilepsy, this is an area of great concern.

Jane Hanna OBE, CEO at SUDEP Action commented,“During the COVID-19 pandemic we have been alongside families experiencing epilepsy deaths, at a time of rising risk – and as clinicians were also redeployed and facing lockdown preparations. We support the call for the urgent resumption of epilepsy services and that the solutions already identified to tackle epilepsy deaths are centre stage of the resumption process. The lessons we have learned from COVID-19 is that raising awareness of, and taking steps to tackle epilepsy risks, is more vital than it has ever been. 
It is imperative that the work of the Prevent21 campaign, reinforced by the new NHS RightCare Epilepsy Toolkit resource, which highlights the importance of taking action against epilepsy risks to save lives - is central of the recovery going forward.”