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.
This November 2020 report, contains data from nearly 300 individuals bereaved by epilepsy, 147 carers, 60 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:
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 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.
- If you have been bereaved by epilepsy please see how we may be able to help or contact [email protected] or 01235 772852.
If you have epilepsy and would like to know more about what you can do to reduce your epilepsy risks, please see our free tools, information & epilepsy helplines here.
You may also like to download the free award-winning EpSMon app to help you monitor your epilepsy risks.