SUDEP Action

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Spotlight falls on SUDEP

Raising awareness of Sudden Unexpected Death in Epilepsy among coroners and pathologists has led to better reporting of SUDEP mortality, Health Minister Norman Lamb has said.

He spoke out after his predecessor, Liberal Democrat Paul Burstow, asked the government to show how the UK compares with other European countries in addressing the level of deaths from epilepsy. He also asked if the Department of Health would review its guidance on the issue.

About 1,000 people die from epilepsy each year in the UK and more than half of these are attributed to SUDEP. Most deaths involve young people.

Mr Lamb, minister of state for care and support, said no comparative assessments had been made, but in the case of SUDEP, heightened awareness among coroners and pathologists had led to better reporting.

“It is therefore inappropriate to compare national statistics across different countries,” he said.
Reducing epilepsy-related deaths

Epilepsy Bereaved’s director Jane Hanna OBE said she agreed. The only way to monitor SUDEP across countries is by research teams working together to compare like with like, she said.

“EB has been working with coroners and pathologists to improve reporting of SUDEP from a time when nobody recognised it,” she said. “The UK is light years ahead of most countries where no work has been done on reporting of SUDEP and other epilepsy deaths.

“We are working with our international partners on both SUDEP registry development and on global awareness so that in the future international comparisons will be possible.”

Mr Lamb added that the National Service Framework for long-term conditions aimed to improve access, experience and outcomes for people with neurological conditions such as epilepsy.

He hoped local service commissioners would support improvements to diagnosis, treatment and information provision that would help reduce the risk of seizures and epilepsy-related deaths.

He said “reducing premature deaths and managing on-going physical and mental health conditions” was a priority for the NHS and for the new clinical commissioning groups.