Epilepsy Ireland News

14-6-2010 | Epilepsy Bereaved Director awarded OBE

14 June 2010
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Congratulations to Jane Hanna, Director of UK epilepsy charity Epilepsy Bereaved who has been awarded an OBE in the Queen's birthday honours list for her services to families. 

Epilepsy Bereaved began as a campaign in 1993 by five women following the sudden unexpected deaths of loved ones, all of whom had epilepsy.

Jane's partner, Alan, had been diagnosed with epilepsy just months before he died suddenly and unexpectedly aged 27. His death was attributed to suffocation, although there was no evidence for this. Jane began the lengthy process of finding the small number of medical professionals who recognised Sudden Unexpected Death in Epilepsy (SUDEP) at the time and to find other people who had been bereaved from SUDEP. 

A television appearance on Watchdog in 1992 kick-started the campaign and Jane, together with Sheila Pring, Catherine Brookes, Jennifer Preston and Sue Kelk founded Epilepsy Bereaved as a charity in 1995. In 1997, Jane took up the role of part-time Director of the charity.

The founders of the charity all had a number of things in common - they had all lost someone to epilepsy and none of the families knew about SUDEP. In all cases, neither pathologists nor coroners nor doctors were able adequately to explain why or how they had died and the deaths were put down as suffocation or unascertained or drowning. 

Under Jane's leadership, the charity set up a support line for people affected by SUDEP, breaking the isolation of the families and providing information on SUDEP and other epilepsy deaths. Today the charity manages 1,000 calls a year and each year provides support for over 100 newly bereaved families in the UK.

In 1996 the charity convened the first international workshop on SUDEP bringing together dedicated researchers and bereaved families to address key questions about SUDEP previously thought too sensitive to be raised even within the scientific community. The workshop led to increased research activity on SUDEP including important new studies highlighting optimum seizure control as a key preventative measure.

The workshop also produced the call for a national confidential enquiry to establish what proportion of epilepsy deaths was potentially avoidable in the UK. A national campaign followed leading to the UK government commissioning Epilepsy Bereaved as the first lay organisation to lead medical royal colleges in a national clinical investigation. In 2002 this investigation reported that 400 of 1000 deaths a year might be avoided. Various initiatives followed including national clinical guidelines on epilepsy and national guidelines for the investigation of epilepsy deaths.

Jane and her organisation have also been very supportive of Brainwave's work in the area of SUDEP over the years. Brainwave and Epilepsy Bereaved have worked together to organise four very successful Living With Loss seminars to support families bereaved by epilepsy in Ireland. Jane was also instrumental in helping Brainwave prepare for the launch of the National Sentinel Clinical Audit of Epilepsy-Related Death and in highlighting the issue in the Irish media as part of National Epilepsy Week 2002 when Brainwave launched a call to action.

On receiving her award, Jane said "This award is a wonderful public recognition of the importance of the SUDEP cause. I am proud to accept it on behalf of the many people I have worked with over the years for whom the cause of awareness and prevention of SUDEP is paramount. At the core of our work are the bereaved families, many of whom are truly inspiring in their courage and support of the charity" 

Epilepsy Bereaved website: www.sudep.org

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