Our History: A snapshot
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1
1990s – the beginning
Five women come together, determined to find out why their loved ones had died suddenly and unexpectedly in the prime of their lives, for no obvious reasons.
Jennifer Preston’s son William died in 1988 aged 22. Jane Hanna’s partner and Sheila Pring’s son Alan died in 1990 aged 27. Catherine Brookes’ son Matthew died in 1991, aged 21, and Sue Kelk’s daughter Natalie passed away in 1992, aged 22.
No one seems to have any answers, not even pathologists and coroners.
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2
1992
Jane Hanna speaks about her partner Alan’s death on the BBC’s investigative programme Watchdog. Catherine sees the show and contacts her. She also appears nationally in the Independent and Guardian newspapers. The women pledge to get a group going to campaign for a better understanding of Sudden Unexpected Death in Epilepsy (SUDEP).
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3
1995
The five women – Jane, Catherine, Sheila, Sue and Jennifer – launch a charity to support families bereaved through epilepsy-related deaths and campaign for a better understanding of SUDEP.
The charity is called Epilepsy Bereaved because few people accept that someone can die from epilepsy.
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4
1996
Epilepsy Bereaved holds the first workshop of international epilepsy experts and bereaved families concerned about sudden death and epilepsy.
A small steering group including Jane Hanna, Jennifer Preston, Professor Colin Binnie; Dr Edward Reynolds; Dr Stephen Brown; Dr Ley Sander and Dr Lina Nashef attract 60 world experts and sponsorship from the pharmaceutical giant Glaxo Wellcome.
Work presented at the conference includes a definition of Sudden Unexpected Death in Epilepsy by Dr Nashef which is adopted in the UK national clinical guidelines.
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5
1997
Jane Hanna is invited to speak alongside researchers at the International Epilepsy Congress in Dublin.
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6
2002
Epilepsy Bereaved secures funding from all four UK governments for the first national inquiry into epilepsy deaths. Funding comes from the National Clinical Audit of Epilepsy-Related Deaths.
Labour MP Stephen Twigg, whose mother had died from epilepsy, is so touched by his contact with one bereaved mother that he becomes leader of the All-Party Group of MPs on Epilepsy and leads debates on epilepsy and sudden death.
The National Audit of Epilepsy Deaths brings together a partnership of experts from five Royal Colleges and the International League Against Epilepsy. The inquiry produces the report, ‘Death in the Shadows’.
This landmark report finds that about 40% of SUDEP deaths are avoidable. An editorial by Professor Hauser (US) and Professor Pedley (US) in The Lancet says it’s a ‘wake-up call to epilepsy management around the world.’
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7
2004
Epilepsy Bereaved is included as a model of good practice in the EUCARE (European Concerted Action on Research in Epilepsy) Project.
SUDEP becomes recognised as a condition by national and local policymakers.
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8
2005
Epilepsy Bereaved & Epilepsy Australia join forces on the book ‘SUDEP – a global conversation’.
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9
2010
Jane Hanna is awarded the OBE for her work.
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10
2011
Epilepsy Bereaved, Epilepsy Australia and SUDEP Aware (Canada) established a three-way partnership.
‘SUDEP – a global conversation’ is launched at the International Epilepsy Congress in Rome with the backing of the International Bureau for Epilepsy and the International League against Epilepsy.
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11
2012
Jane Hanna is invited to give the keynote address at the three-day Partners Against Mortality in Epilepsy (PAME) conference in Chicago.
Her speech prompts organisers Jeff Buchhalter and Gardiner Lapham to say ‘your personal efforts and those of Epilepsy Bereaved have provided inspiration for us in the United States and around the world’.
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12
2013
The Epilepsy Deaths Register (EDR) is launched to provide a single point for reporting all epilepsy-related deaths.
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13
2015
Important new tools are launched free to the public: The EpSMon – a digital app that allows people to self-monitor their epilepsy risks. And the SUDEP & Seizure Safety Checklist is designed to aid clinicians as they discuss epilepsy risks with patients.
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14
2017
The charity changes its name to SUDEP Action in recognition of its work with researchers to come up with the definition of SUDEP and become global leaders in awareness and prevention.
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15
SUDEP Action Now
5,200+ registered EpSMon users
1,700+ clinicians engaged with the SUDEP & Seizure Safety Checklist
16,700+ people personally supported each year, including the bereaved
The EDR is the largest database in the world for info on epilepsy deaths – pioneering important new research
SUDEP Action
We’re here for you, for as long as it takes
5,200+
Registered EpSMon users
1,700+
clinicians engaged with the SUDEP & Seizure Safety Checklist
16,700+
people personally supported each year, including the bereaved
EDR
is the largest database in the world for info on epilepsy deaths – pioneering important new research
For one-to-one support after an epilepsy death contact our support team today
We provide the only support line for people bereaved by an epilepsy death and offer access to qualified counsellors who have a special interest and understanding in sudden and traumatic death.
