SUDEP Action

Making every epilepsy death count
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Lives Cut Short

A new report on urgent measures to tackle deaths in epilepsy and support the bereaved during the COVID-19 pandemic

The impact of the COVID-19 pandemic on the epilepsy and epilepsy bereaved communities has been significant, and shows little sign of returning to normal.

Before the pandemic, epilepsy was already underprioritised, and over 21 epilepsy deaths were thought to be happening each week in the UK - deaths often in the young and otherwise heathy. At least 42% of these deaths are thought to be potentially avoidable.

Similarly, people bereaved suddenly by epilepsy are left deeply traumatised and left to navigate alone complex systems and processes that don't always understand epilepsy or SUDEP (Sudden Unexpected Death in Epilepsy) deaths.

Since Spring 2020, SUDEP Action have repeatedly raised concerns that epilepsy risks are rising, and lives are being put at risk. And that as a result people bereaved by epilepsy are facing more trauma and devastation.

Because of this, we commissioned research to understand the impact of COVID-19 on these communities, in collaboration with the University of Oxford, Newcastle University and The Epilepsy Deaths Register.
You can find our more about this ongoing research here

The authors of the Lives Cut Short report include the SUDEP Action team that specialises in epilepsy mortality research and services and epidemiologists. We predicted a surge in deaths during 2020 in May and this report repeats this alert to the whole system that unless epilepsy services are protected during the pandemic and epilepsy and risk understood that excess deaths in people with epilepsy will surge. We predict a 50% increase is likely and our first recommendation is that the Government counts and models excess deaths in people with epilepsy (this means the increase in deaths over and above the number of deaths (average) over the previous 5 years).   

This November 2020 report, contains data from nearly 300 individuals bereaved by epilepsy147 carers60 healthcare workers, and 316 people with epilepsy.

Showing how epilepsy risks have escalated and appreciation of risk fallen during the pandemic as dramatic challenges in access to health care including essential medications, investigations and health contacts have occurred.

Findings from this initial UK research data is presented here in our LIVES CUT SHORT report - and it makes for concerning reading. 

                                             

Lives Cut Short, reveals that:

  • 40% of people with epilepsy had worsening health during the first wave of the pandemic,
  • 87% reporting increasing mental strain.
  • 33% of people with epilepsy are experiencing issues in accessing care during the pandemic,
  • 25% having difficulties accessing their vital anti-seizure medication prescriptions

all are known risk factors for avoidable epilepsy deaths. 

It also highlights that 86% of those suddenly bereaved by epilepsy felt their mental health had been negatively impacted on by the pandemic & Government's lockdown response, with 60% experiencing increased isolation & 51% experiencing distressing flashbacks.   


DOWNLOAD THE REPORT:

PDF icon Lives Cut Short - SUDEP Action

 

To help launch the report, SUDEP Action's CEO, Jane Hanna OBE spoke on the on Mid-Morning Show with Gary Philipson, BBC Radio Tees on Monday 16 November.


Listen to the interview via the link below:
 

BBC Radio Tees

         

 

BBC South News (Oxford) covered the report on Monday 23 November, interviewing Jane Hanna, and Jennifer Thorpe, SUDEP Action Research Assistant, who shared her experiences as someone with epilepsy.

 

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