Bill Armstrong, H M Coroner
“There is clearly a need for this kind of project that will lead to more research information on SUDEP deaths. A coordinated national approach is plainly required. It is of course important that coroners collate and provide necessary information. I am certainly prepared to do so and I hope my colleagues will also be anxious to help”
Professor Dame Sally Davies, Chief Medical Officer
“A register would provide an invaluable insight into the circumstance of SUDEP and open up much greater understanding than is available today. Once established, it will be a most important tool for departments like mine to help shape policy and guidance”.
Graham Faulkner, Chief Executive, Epilepsy Society
“We have established an Epilepsy Commissioning Group to influence health commissioners in the UK in the services they provide for people with epilepsy. Membership includes Epilepsy Action, SUDEP Action, clinical and commissioning experts and representatives from the pharmaceutical industry. The commissioning group would be able to make good use of a SUDEP and Epilepsy Deaths Register in our work programme. I sincerely hope that SUDEP Action can be supported in this initiative and the Epilepsy Society will help advertise and support this development.”
Mr Mike Glynn, President of the International Bureau for Epilepsy
“The need for a UK register of epilepsy-related deaths has long been identified. This model of a community-based register should negate the current distortion caused by deaths recorded in specialist centres only. The IBE would wholeheartedly support the dissemination of any findings and recommendations of a register to a global audience”
Norman Lamb MP, Minister of State for Care and Support
I am pleased to have met with Jane Hanna and representatives of SUDEP Action on 13th December and to learn more about their proposal for a SUDEP register. At the meeting I expressed support for their ambition and asked my officials to meet the organization to explore ways in which the Department can help.
The important work that SUDEP Action is doing to bring SUDEP to greater public attention is entirely concordant with the governments’ broader aims for health and social care in England. A key element of improving outcomes and tackling premature mortality is having the right information to improve understanding and inform actions – and the SUDEP register being proposed will make an important contribution to this.”
Dr Jim Morrow, lead for the UK epilepsy pregnancy register
“As you are aware we have employed a very simple methodology and this has been beneficial in the longevity of the project which has now been around for some 10-15 years and the support for it has not waned.
Given our own experience, I would envisage that a UK SUDEP registry would be along similar lines and garner both professional and public support and again be extremely useful tool in advising and answering core research and practical questions.
The previous clinical deaths audit in 2002 has been extremely useful in advising health professionals on the risks associated with epilepsy and its poor control, a registry would take this work forward and could prove a powerful lever on policy makers advising on the provision of epilepsy services and also invoke changes in clinical practice. I would be happy to provide my support as an expert adviser.”
Professor Phil Smith Chair of the Audit committee of the UK ILAE
“ There is..clear evidence of the power that a UK registry will have in driving forward changes in epilepsy policy as well as facilitating developments in epilepsy research and clinical practice. There have been undoubted improvements since the national clinical audit of epilepsy-related deaths 2002 and, given that these data are now 10 years old, we have a serious evidence gap at a time when preventable mortality is a necessary government priority. The audit committee of the ILAE UK Chapter is unanimously supportive of the proposal for a SUDEP database. I should personally be delighted to be the lead for the registry in Wales to champion the register nationally and internationally."
Professor Ley Sander, UCL Institute of Neurology
Dr Maria Thom, UCL Institute of Neurology
Dr Sanjay Sisodiya, UCL Institute of Neurology
“We would like to confirm our support for your endeavour, through SUDEP Action, to establish a registry for the reporting of a death in a person with epilepsy. We agree that the system you propose would better coordinate research teams working on SUDEP with the UK network of Coroners. We all agree that tissue and molecular studies in SUDEP are vital to further understanding this condition, but that brain donation needs to be handled sensitively.
The proposed infrastructure, which includes a reporting centre and support team that could approach bereaved relatives wishing to participate in epilepsy research, is the way forward to address the difficulties regarding tissue donation at this difficult time for relatives. A network of rapidly-accessible, appropriately-informed people, such as those working for SUDEP
Action would be best placed to help relatives. We consider it is important that those who wish to partake in studies in SUDEP have this opportunity to discuss options relating to tissue donation research programmes. We look forward to working with you on this important initiative.”
Sue Thomas, Chief Executive, Neurological Commissioning Support
“From my work with NCS and our experience of working with local commissioners there is a paucity of knowledge of SUDEP and a dire need for more research information on SUDEP deaths. Neurological Commissioning Support currently has high profile nationally, with the Government and would be able to make good use of a SUDEP registry in our work programme on epilepsy. In the majority of areas we are working epilepsy has the most serious impact on services and lives. NCS would do everything in its power to support this development “
Wales Epilepsy Research Network
“The Wales Epilepsy Research Network (WERN) is delighted to support SUDEP Action’s Epilepsy Deaths Register, and sees this as a major opportunity to understand better the epidemiology and the preventable risk factors of this tragic outcome. WERN has strong existing databases of epilepsy patients attending specialist clinicians in Wales and has been active in investigating sudden deaths in epilepsy. Members of WERN are pleased to have the opportunity to contribute to a national database that promises to be the springboard to preventing epilepsy-related deaths in the UK and beyond.
The national register is a long overdue initiative that will create a vital resource for activity in understanding the causes and circumstances of SUDEP. Unexplained and unexpected deaths are too common in epilepsy and are a powerful motivation behind people volunteering to help us at WERN; both for our family genetics projects and for our patient research and development group. It is inconceivable for this project to be launched without the energy and experience of SUDEP Action. This register will allow each family’s tragedy to assist in reducing the risk of SUDEP for the benefit of all people with epilepsy. "