SUDEP Action

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

The Guardian has today (30 January) published a letter that our epilepsy coalition has written, about the dangers of a medication shortage which will pose to those on life saving medications. From 9 February, new powers will be issued allowing medicines to be issued by pharmacists, without prescription

See below the full statement from the coalition:

Coalition Position Statement  
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. Key risks include breakthrough of dangerous seizures as well as depression and anxiety which can lead to suicide. Many people with epilepsy are on other medications, especially the elderly, and any changes require careful management because of interactions between medicines. Up to 90% of people with epilepsy state that a deterioration in mood can have a negative effect on seizure control and anti-epileptic medications have more significant interactions than any other group of drugs.
Recently (18 January) there was public concern after reports from the Royal Pharmaceutical Association about the scale of current medicine shortages. Government has included Serious Shortage Protocols as part of planning for a potential No-Deal Brexit on 29th March. On January 14th the Secretary of State and Department of Health in Northern Ireland made the Human Medicines (Amendment) Regulations 2019. This provides for a new permanent power for the ministers to manage serious shortages of medicines in any part of the UK. It allows medicines to be issued by pharmacists, without prescription and will come into force on 9th February. There is no exemption ruling out the need for changes in medication schedules for people with epilepsy. It allows a new regulatory framework, side-stepping existing legislation. It contradicts laws that safeguard patients and that provide temporary contingency powers to act when there are medicines shortages. This has happened without the normal processes of formal public consultation and scrutiny by parliamentarians. We have not been allowed to give evidence despite corresponding with Government for nearly a year.
We last wrote to the Secretary of State for Health and Social Care for England in December, about our urgent concerns, but have not yet had a response. 
We are concerned that Government plans could increase the risk of avoidable deaths in people with epilepsy. We urgently call on 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 approach the 29th 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
Leslie Young, Epilepsy Scotland
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


If you are a clinician or a person with epilepsy, and are concerned about medication availability, you can find out more information and steps that you can take on our Brexit and Managing risks page.