Pills to control seizures associated with epilepsy — ‘Many people with epilepsy are also on other medications, and any changes require careful management because of interactions between medicines,’ say the signatories to this letter. Photograph: Aprecia/EPA

No-deal Brexit poses a potentially fatal risk to those with epilepsy

This article is more than 5 years old

A coalition of epilepsy and neurology organisations warn of the dangers in the event of a national medical shortage

As senior leaders in epilepsy concerned with safeguarding patients, we do not have confidence in the current arrangements to ensure the continuity of life-saving medications for people with epilepsy. Epilepsy affects 600,000 people in the UK. There are 21 epilepsy-related deaths each week, many in the young, many avoidable, and deaths have been rising. Many people with epilepsy are also on other medications, and any changes require careful management because of interactions between medicines.

Recently, there was public concern after reports from the Royal Pharmaceutical Association about the scale of current medicine shortages. The government has included serious shortage protocols as part of planning for a potential no-deal Brexit on 29 March. On 14 January, the secretary of state and Department of Health in Northern Ireland made the Human Medicines (Amendment) Regulations 2019. This provides a new permanent power for ministers to manage serious shortages of medicines in any part of the UK. From 9 February it will allow medicines to be issued by pharmacists, without prescription. This sidesteps existing legislation that safeguards patients and has happened without the normal processes of formal public consultation and scrutiny by parliamentarians.

A letter was sent to the secretary of state for health and social care for England in December, about our urgent concerns, but no response was received.

We are concerned that these government plans could increase the risk of avoidable deaths of people with epilepsy. We urgently call on the government to intervene to stop any risk to patients’ health and to make explicit safeguards for the continuing supply of medications for people with epilepsy. Time is of the essence, as we near the 29 March Brexit deadline.

Ivan Lewis MP
Norman Lamb MP
Jane Hanna Chief executive, Sudep Action
John Hirst Chair, Sudep Action
Sarah Vibert Chief executive, Neurological Alliance
Professor Adrian Williams Chair, National Neurology Advisory Group (NNAG)
Professor Matthew Walker President, International League Against Epilepsy
Maxine Smeaton Chief executive, Epilepsy Research UK
Mark Devlin Chief executive, Young Epilepsy
Phil Tittensor Chair, Epilepsy Specialist Nurses Association
Phil Lee Chief executive, Epilepsy Action
Phil Tittensor Chair of Epilepsy Specialist Nurses Association
Leslie Young Epilepsy Scotland
Jane Hanna Chief executive, Sudep Action
Professor Matthew Walker UCL, London
Professor Tony Marson Professor of neurology, University of Liverpool
Dr Arjune Sen Consultant neurologist and hon fellow, Corpus Christi College, Oxford
Professor Helen Cross Institute of Child Health, UCL
Professor John Paul Leach University of Glasgow
Professor Phil Smith Immediate past president, Association of British Neurologists
Professor Hannah Cock Consultant neurologist, St George’s, University of London
Professor Leone Ridsdale Institute of Psychiatry & Neuroscience, King’s College, London
Dr Rhys Thomas Honorary consultant and clinical fellow, Newcastle University
Professor Mike Kerr University of Cardiff
Kim Morley Advanced clinical practitioner, independent nurse/midwife prescriber, registered nurse (adult) and registered midwife
Dr Melissa Maguire Consultant neurologist and honorary clinical associate professor, Leeds Neurosciences and University of Leeds
Professor Stephen Brown Cornwall