Epilepsy risks in Ukraine: A statement from senior leaders
As senior leaders in epilepsy we watch Ukraine and its neighbouring countries in the worst humanitarian crisis in Europe since WWII. For many with life-threatening conditions such as epilepsy, the impact of this horror risks limiting their access to essential medications and worsening their seizures.
Epilepsy is the commonest life limiting neurological condition worldwide; for those affected, access to medicines can literally be a matter of life or death. Many involved in humanitarian assistance in war zones to help get people shelter, food and water will understandably not be aware of epilepsy as a hidden killer if left untreated. Whether a breakthrough seizure, trauma or other risks, someone with epilepsy who looks very well may be facing a storm of risk factors that are life-threatening.
The risk in Ukraine and for people fleeing the country is the immediate loss of medical supply and assistance to help keep them safe from death, including Sudden Unexpected Death in Epilepsy (SUDEP) or injury in the context of seizures. Continuity of supply of medicines, access to medical assistance that is informed by life-saving knowledge of the risks that people with epilepsy actually face is vital at this time for all. The World Health Organisation and its partners recognise epilepsy as a major public health concern across the globe as people face a three times risk of death compared with the general population. The young in the prime of life between 20 and 40 are recognised as most at risk. We urge the UK government to do all it can in the UK and in our international humanitarian assistance to facilitate supplies of essential medications to Ukraine and the neighbouring regions.
Preventing or reducing seizures or reducing the need for treatment in Accident and Emergency are known to lower risk of sudden fatality and injury in a UK population. As families and clinical champions concerned to prevent avoidable deaths here in the UK we offer our expertise. We are in readiness to support the UK government's planning in the UK as it works with European and other countries and non-governmental agencies to find practical solutions to support humanitarian relief. We urge the government or departmental officials to meet our coalition to progress this.
Jane Hanna OBE, CEO of SUDEP Action
Dr Shani Sanarasekera, Consultant Neurologist, QEBH (clinical lead for Statement)
John Hirst CBE, Chair of SUDEP Action
Professor Mike Kerr, Vice-Chair of SUDEP Action
Phil Lee, CEO Epilepsy Action
Leslie Young, CEO of Epilepsy Scotland
Dr Manny Bagary, President of International League Against Epilepsy British Branch (ILAE)
Juliet Solomon, Executive Director of International League Against Epilepsy British Branch (ILAE)
Phil Tittensor, Chair of Epilepsy Nurses Association
Dr Arjune Sen, Consultant Neurologist, The John Radcliffe Hospital, & Honorary Fellow, Corpus Christi College, Oxford
Dr Elaine Hughes, Consultant Paediatric Neurologist, Evelina Childrens & Kings Hospitals. London
Dr David Nicholl, Consultant Neurologist, University Hospitals Birmingham NHS Foundation Trust
Dr Melissa Maguire, Consultant Neurologist, Leeds Teaching Hospitals NHS Trust
Professor Leone Ridsdale, Professor of Neurology & General Practice, King’s College, London
Dr Owen Pickrell, Consultant Neurologist, Swansea University Medical School
Dr Brendan McLean, Consultant Neurologist, Royal Cornwall Hospitals NHS Trust
Kim Morley, Epilepsy Specialist Midwife/Nurse Practitioner, Hampshire Hospitals NHS Foundation Trust
John Craig, Consultant Neurologist, Belfast Health and Social Care Trust