Professor Phil Smith, President UK Chapter of the International League Against Epilepsy;
“Jane Hanna has done so much to raise the profile of epilepsy in the UK and worldwide. I am absolutely delighted that her tremendous contribution to the welfare and safety of patients with epilepsy has been deservedly recognised”.
Dr Henry Smithson Chair, International League against Epilepsy GPs Group and Chair, NICE Clinical Guidelines on the Epilepsies Development Group (2004);
“ It is a privilege to be working with such a strong and necessary charity. I do believe it is a rich reward for all the help and support the charity has offered to bereaved families and to the science behind prevention of future deaths.
For many years hundred’s of people were dying of unexplained death related to epilepsy and it took the efforts and courage of yourself and other trustees in the charity to bring this into national focus. As a result we now more fully understand the problem and the impact and I am sure that the scientific basis of this work will save many lives in the future as the wonderful support for families tries to reduce the pain of bereavement”.
Professor Mark Richardson, Paul Getty III Professor of Epilepsy, Director, Institute of Epileptology
Dr Lina Nashef Consultant Neurologist and Honorary Senior Lecturer, King’s College Hospital;
Ley Sander NSE Professor of Neurology and Clinical Epilepsy at the Institute of Neurology of University College London and Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery, Queen Square, London;
“It is so great to hear that the Queen has recognised the sterling work Jane Hanna has done in raising awareness about epilepsy and bringing SUDEP to the forefront. This is a well deserve award for all the work she has done. Congratulations, Jane”.
Professor Stephen Brown Consultant Neuropsychiatrist and Honorary Professor of Developmental Neuropsychiatry in the Peninsula Medical School;
“Jane took the pain of her personal bereavement and turned it into the energy of achievement. This achievement has had significant impact at a national and international level. Others in her position might only have been able to express anger and might not have been able to use their feelings and experience in such a constructive way. The setting up of Epilepsy Bereaved as a support group and later as a charity is documented elsewhere. At that time the work of the various epilepsy charities and voluntary organisations in the UK was poorly coordinated and it would seem strange to an outsider now that so little attention was then paid to the mortality of epilepsy, although a small number of us were engaged in this area.
The contrast with today, where the epilepsy world is much more likely to speak with one voice, and where epilepsy-related mortality is seen as a significant public health issue by all the UK governments, is to a very large part Jane’s accomplishment”.
Mel Goodwin, Chair, Epilepsy Specialist Nurses Association;
“The work you have done through epilepsy bereaved has meant that epilepsy has been noticed. This has had a knock-on impact on epilepsy services and has been a means of argueing for more epilepsy specialist nurses”.
“Epilepsy Bereaved led the National Sentinel Audit of Epilepsy-Related Death 2002 and the Royal College of Pathologists worked in partnership with the charity as part of this ground-breaking investigation. The report found that many deaths were not properly investigated and led to the Royal College producing national guidelines on the investigation of epilepsy-related deaths. The Royal College of Pathologists and Epilepsy Bereaved subsequently convened the first national educational event for pathologists on sudden unexpected deaths, bringing together experts and charities concerned with SUDEP, SIDS and SADS. Getting the certification of death right is crucial for research into prevention of SUDEP”.
“The OBE is a well deserved recognition of the tremendous work of the charity over 15 years to bring a much neglected area to the fore”.
Dr Nigel Chapman, HM Coroner, Nottingham;
“This is a magnificent achievement and well deserved. Jane has brought epilepsy into the public domain as no other person could have done. She has taken personal grief and turned the energy into making the disease and the death in epilepsy an easier and more importantly an explainable loss to the families. From 1992 Jane has worked tirelessly, firstly making SUDEP a charity and then a world wide organisation. During this time families now have help from understanding and sympathetic councillors”.
”The Charity has grown out of all expectations and now has websites, leaflets and conferences all under the guidance of Jane. There are booklets for Coroner’s and pathologists, all designed to help and encourage good practice. What an achievement in such a short space of time! This accolade is just reward for all the years of hard work”.
Jeffrey Buchhalter MD, PhD, Chair, USA SUDEP Coalition;
American Epilepsy Society, Citizens United for Research in Epilepsy (CURE), Epilepsy Foundation, National Institute of Neurological Disorders and Stroke (NINDS)
“The SUDEP Coalition would like to congratulate Jane Hanna, Executive Director of Epilepsy Bereaved on her recent receipt of an OBE award. Epilepsy Bereaved has led the now world-wide effort to bring public awareness to the existence of sudden death associated with epilepsy, possible preventative measures and research into its causes. We are all indebted to the past and ongoing work of Ms. Hanna and Epilepsy Bereaved”.
