SUDEP Action Chief Executive scoops Global Impact Award on Epilepsy

SUDEP Action Chief Executive Jane Hanna OBE has been awarded the Social Accomplishment Award in Epilepsy.  The award is given out by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE).  The organisations represent patient and medical epilepsy organisations around the world.  

The award reflects international peer recognition of outstanding contribution to activities that have led to significant advance in the wellbeing of people with epilepsy.  The accolade which has rarely gone to non-medics was last awarded to an epilepsy specialist in the UK 30 years ago.

Professor Shorvon, Chair of the ILAE (British branch) representing UK doctors and nurses who nominated Jane Hanna OBE for the award said: “She had the vision and commitment to use her experience to throw light on the largely unrecognised issue of epilepsy mortality…22 years of conviction, enthusiasm and refusal to be deflected have resulted in a seismic shift in thinking and practice on SUDEP and epilepsy mortality not only in the UK, but internationally. She has led the field successfully desensitizing SUDEP and epilepsy mortality and bringing it to the fore as a driver for improvements in care for people with epilepsy and their families”.

Today epilepsy is recognized in the top ten of all causes of early death, yet 22 years ago a myth persisted in the medical community that people could not die from epilepsy. Jane was one of 5 women who began a campaign on Sudden Unexpected Death in Epilepsy (SUDEP) in the 1990’s.

Jane commented: “This award for work on SUDEP and epilepsy mortality is the best marker yet of how much progress has been made since the dark days when SUDEP was too sensitive to be talked about. 

It reflects the passion and commitment of all the advocates of the SUDEP cause and the researchers and scientists who have travelled the same road with us over so many years. The award gives us all great impetus for our future programme of action to prevent deaths”.

Also commenting on the award, Dr Greg Rogers, Chair of the UK’s specialist GP’s organisation stated: “The work of SUDEP Action has been of great help over the past decade or so in helping to raise the profile of epilepsy amongst the other common long term conditions that we see in the UK.  There truly has been a seismic shift in thinking and practice on SUDEP and epilepsy mortality over the past 15 years that I have been involved in Primary care epilepsy and this is largely all due to this group.”

SUDEP Action led the first international research workshop on SUDEP.  The workshop led to the first inquiry into epilepsy deaths not only in the UK but around the world.  The enquiry resulted in a report that showed that 42% of epilepsy deaths were potentially avoidable.  This led to improvements in the field which include national guidelines for clinicians and pathologists, financial incentives for GPs to see their epilepsy patients as well as changes in clinical practice.  

The award will be given out in June at the 30th International Epilepsy Congress in Montreal.

For more information on the award visit: http://www.ibe-epilepsy.org/montreal-awards-2013/.