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SUDEP Action

SUDEP Action supports anyone bereaved by epilepsy offering emotional support, counselling, advocacy and involvement in research through our Epilepsy Deaths Register. We work to prevent epilepsy deaths and promote better awareness of epilepsy risks. Our free award-winning safety tools are provided to clinicians, people with epilepsy and their families and are recognised as best practice by NHS RightCare.

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Registered charity no. 1164250

Member since February 2021

About us

Over 600,000 people living in the UK are affected by epilepsy and it can affect anyone at any time. At least 21 people with epilepsy who are otherwise well and who are often completely unaware of their epilepsy mortality risk die each week, and this is an urgent need which SUDEP Action actively works to address, so avoidable deaths from epilepsy can be prevented across the UK. Sudden Unexpected Death in Epilepsy (SUDEP) is when someone with epilepsy dies suddenly and prematurely. It is a leading cause of death in the young (aged 20-40).

Epilepsy carries a mortality that is, on average, 2-3 times higher than the general population, with the risk of sudden unexpected death increased more than 20-fold in young people. In the UK epilepsy is the 5th highest contributor to the years of potential life lost (YPLL) in men, and the 8th in women. The UK National Sentinel Clinical Audit of Epilepsy Deaths found that 42% of epilepsy-related deaths were considered avoidable and more recent research suggests this number is actually 50% or higher. A systematic review of international studies has concluded that the public health burden of SUDEP alone, is estimated as second only to stroke among neurological conditions.

SUDEP Action is a UK charity which aspires to stop unnecessary deaths from epilepsy. We represent the voice of the bereaved and prioritise the acceleration of good practice as well as learning from deaths. We provide information, training and support to clinicians, patients and the bereaved and we also share our extensive research, knowledge and expertise via specialist journals, in conference papers and at our bi-annual Prevent-21 summit held at Corpus Christi College in Oxford.

The charity also provides a research and data forum, the Epilepsy Deaths Register (EDR), which is centred on learning from epilepsy deaths to most effectively reduce epilepsy risks in the wider community. Changing and saving lives by placing people, life-saving knowledge, life-saving tools and emotional support first is the charity’s priority.

Additional awareness raising and campaigning for improved standards of patient care for those living with epilepsy are also a fundamental part of SUDEP Action’s work, driven by the bereaved who wish no one else to experience the trauma and loss they live with every day. For those who have been bereaved, SUDEP Action provides free, highly specialised counselling and support following the traumatic and sudden death of a loved one to epilepsy and this support is available for as long as it is needed, sometimes over many years.

Our free, vital and potentially life-saving and award-winning safety tools, such as our SUDEP & Seizure Safety Checklist, used by clinicians and other health professionals to create open discussions about epilepsy risk, SUDEP and risk mitigation with patients, and our EpSMon App, a free, downloadable App which helps epilepsy patients self-monitor their epilepsy risks between health appointments. These tools are award-winning, demonstrated to be effective in reducing risk and have been recognised as best practice by NHS Right Care. We work tirelessly across the UK to enable these safety tools to reach all who need them and to train those who use them.