Epilepsy community calls for urgent action to prevent Brexit-related epilepsy deaths
SUDEP Action and a coalition of epilepsy organisations and experts continue to call for urgent action to prevent Brexit-related epilepsy deaths following the release of Government’s Yellowhammer document.
The coalition recently called on Government to publish their No Deal Brexit 'Yellowhammer' papers, so steps can be taken to prevent epilepsy deaths due to medication shortages. The report has now been made public but has done little to reassure the concerned epilepsy community.
19th November 2019: National papers (The Guardian, Huffington Post UK & The Daily Mail) reported on 18-19th November that official documents had been leaked evidencing unprecedented UK medicine shortages and plans for centralised rationing.
Please support our statement expressing our concerns here:
13 September 2019
As senior leaders in epilepsy concerned with safeguarding patients, the Yellowhammer Report which confirms the very real risk of patient deaths comes as no surprise. We have been campaigning to raise awareness regarding these concerns for 10 months.
There are very serious questions currently unanswered. What are all the scenarios that have been worked on by civil servants? What does government and the public consider an acceptable level of increase in avoidable deaths for any scenario of No Deal? What is the system of accountability for any deaths and adverse outcomes? Any government plan needs to address these and many more unanswered questions.
Epilepsy affects 600,000 people in the UK. There are 21 epilepsy-related deaths each week, many in the young, far too many avoidable.
SUDEP Action - a charity which represents a community of bereaved families, supported by a network of health professionals, researchers and industry specialists - brought together a coalition of organisations and cross-party MPs who have asked us to lead advocacy in tackling this devastating consequence.
If Yellowhammer is not the worst-case scenario, we would like to have clarity on what is? Our coalition is calling now for transparency on all scenarios that exist because we do not believe one more unnecessary death is acceptable. As a community we are seriously concerned that the Government would permit a scenario that increases risks of death of people. We have been repeatedly denied a meeting with a minister to consider how it can act urgently to introduce the good practice needed to stem the tide of rising deaths in people with epilepsy (Public Health England, Deaths Associated with Neurological Conditions report, 2018)
We feel certain that any Minister meeting with us and hearing first-hand the impact of an avoidable death wouldn't knowingly enable this level of risk on people living with epilepsy.
We have a duty of care to not let this issue lie, as we witness on a daily basis the devastating and life-long impact of sudden avoidable epilepsy deaths on families and communities. We represent the voices of our community, it is the Government’s duty of care to respond.
Jane Hanna OBE, CEO, SUDEP Action (linked charity Epilepsy Bereaved)
John Hirst CBE, Chair of SUDEP Action (linked charity Epilepsy Bereaved)
Paula Sherriff MP, Chair of the All Party Parliamentary Group for Epilepsy
Norman Lamb MP for North Norfolk
Dr Philippa Whitford MP for Central Ayrshire
Phil Tittensor, Consultant Nurse for the Epilepsies, Epilepsy Specialist Nurse Association
Maxine Smeaton, CEO, Epilepsy Research UK
Lesslie Young, CEO, Epilepsy Scotland
Shirley Maxwell, Executive Director, Epilepsy Connections
Sarah Vibert, CEO, Neurological Alliance
Phil Lee, CEO, Epilepsy Action
Dr David Nicholl, Consultant Neurologist, City Hospital, Birmingham
Professor Leone Ridsdale, Professor of Neurology and General Practice, Kings College, London
Dr Arjune Sen, Neurologist, The John Radcliffe Hospital, Oxford Professor
Professor Mike Kerr, SUDEP Action Trustee & Professor, Cardiff University
Dr Rohit Shankar MBE, Clinical Director Cornwall Partnership NHS Trust Hon. & Associate Cl. Professor Exeter Medical School
Dr Heather Angus-Leppan, Consultant Neurologist and Epilepsy Lead, Royal Free London NHS Foundation Trust
Professor Hannah Cock, Professor of Epilepsy & Medical Education & Consultant Neurologist St George's, University of London
Dr Colin Dunkley, Consultant Paediatrician, Sherwood Forest Hospitals NHS Foundation Trust
Dr Manny Bagary, Consultant Neuropsychiatrist, Birmingham and Solihull Mental Health NHS Foundation Trust, Treasurer for the International League Against Epilepsy (ILAE) British Branch
Dr John Craig, Consultant Neurologist, Belfast Health and Social Care Trust and Chair UK and Ireland Epilepsy and Pregnancy Register
Dr Michael Kinney, Consultant Neurologist with sub-specialist interest in Epilepsy, Belfast, Northern Ireland
Dr Judy Shakespeare, Retired GP
Dr Craig Newman, Psychologist / Director, Uxclinician Ltd
Dr Thomas Peukert, Consultant Neurologist Belfast, Special interest: Acute Neurology
Professor John Paul Leach, Consultant Neurologist and Head of Undergraduate Medicine, University of Glasgow
Dr Rhys Thomas, Honorary Consultant in Epilepsy & Intermediate Clinical Fellow, Newcastle University
Dr Matthias Koepp, UCL Queen Square Professor of Neurology, and Consultant Neurologist, Epilepsy Society and National Hospital for Neurology and Neurosurgery, London
Dr Fergus Rugg-Gunn, UCL Consultant Neurologist, Epilepsy Society and National Hospital for Neurology & Neurosurgery, London
Professor John Duncan, UCL Consultant Neurologist, Epilepsy Society and Clinical Director for the National Hospital for Neurology & Neurosurgery, London
Dr Fraser Scott, Consultant Paediatrician, Mid Yorkshire NHS Trust
Dr Paul Cooper, Consultant Neurologist, Salford Royal Foundation Trust
Sammy Ashby, Deputy CEO, SUDEP Action and Co-Chair of the Neurological Alliance Policy group
Simon Lees, SUDEP Action Trustee, expert patient living with epilepsy
Juliet Solomon, Executive Director, ILAE British Chapter
Sally Gommersall, Epilepsy Trainer, Epilepsy Awareness Ltd
Missed our campaigning earlier this week? Read more about what the Coalition called for below:
We called for transparency over No-Deal planning:
This latest call from the coalition follows revelations by Dr David Nicholl about patient safety concerns. We trust Dr Nicholl flagging these public interest concerns - as an expert doctor who has seen secret Government information and advice, and was involved in writing the secret YellowHammer report. In the light of this, and the recent attack on the integrity of Dr Nicholl, we called for the publication of the medicines sections of Yellowhammer, so that the record can be set straight and the public interest protected.
The Sunday Times published an article once again highlighting the significant risk Brexit is likely to have on people living with epilepsy, or other health conditions requiring regular medication. Since December 2018, SUDEP Action have led on this issue, campaigning with epilepsy/neurology organisations and experts, to express repeated concern over the lack of transparency over Government's Brexit planning to ensure life-saving epilepsy medication supplies are not disrupted, regardless of the Brexit outcome.
Despite our continued call for clarity, involving repeated letters to Government, including letters published in The Sunday Times, The Guardian, and also coverage by Channel4 News about the danger to life that ill-prepared medicine shortages could pose; we have still received no firm evidence that people with epilepsy will not be put at additional, life-threatening risk.
During the Parliamentary Debate on medicine shortages in March 2019, MPs were briefed on key issues, and SUDEP Action was also a key witness in a Judicial Review earlier this year, as well as inputting into two special meetings on Brexit and medicines with the All Party Parliamentary Groups on Epilepsy and the All Party Parliamentary Group on Medicines and Devices. However, Government has yet to meet with members of the coalition about this issue.
We wrote an open letter to Government sharing not only our concerns as experts in the field of epilepsy mortality, but the fears of our supporters, patients and members of the public who are increasingly in contact and worried about being able to access their epilepsy medications. This letter was also sent direct to the Prime Minister.
You can read our letter here:
Brexit Epilepsy Risks - Letter to Government (9th Sept 2019)
SUDEP Action has received an acknowledgement of our letter to the Prime Minister on 9th September which requested a meeting - which has not yet been granted.
A further response from the Department of Health and Social Care was received on the 31st Oct.
Dept Of Health & Social Care Reply (Oct 2019)
“Some doctors and nurses, and patients, are already struggling to get hold of medicines, and nothing should be done that could make this worse. Access to a continuous supply of medicine, tailored by a specialist to what works for that particular patient, is the first line of defence against unnecessary epilepsy deaths. There are already 21 deaths a week due to epilepsy. We predict rising deaths with any rising of risks. We believe every epilepsy death counts.
We are already experiencing deaths where there have been medicines shortages. Epilepsy has not been exempted from rationing. We have had written confirmation that changes in dose, strength and form of a medicine can be made. We urgently require openness with the public about the causes of medicines shortages and seek the publication of evidence of the impact of any rationing of medicines on health inequalities and people living with a health condition.
While Brexit is currently on hold, a No Deal Brexit is not off the table and could still inevitably lead to an increasing of risk for people with epilepsy. There is still a potential threat of a No Deal Brexit, despite best efforts of some to prevent this. We understand that the civil service is working hard to avoid any current shortages. In light of this, we struggle to understand why politicians would gamble with people’s lives. People with epilepsy are already at an increased risk of premature death. Medicine supply issues, changes to their treatment routines and increased stress and anxiety, could make these risks life threatening. We worry hugely that politicians will not ever know whether any avoidable deaths have followed a medicines shortage, as we understand there is no dedicated system for reporting of these deaths“
Jane Hanna OBE, CEO SUDEP Action
What you can do
If you have epilepsy, know someone living with the condition, or are a clinician who supports those with epilepsy and are concerned about what this means for you - please see our Medication Shortages and Managing Risks page.
It is vital that people with epilepsy do not stop taking or make changes to their medication without speaking to the clinician who originally prescribed their medication. If you have concerns over this, please speak to the clinician who helps to manage your epilepsy. These epilepsy helplines may also be able to provide you with advice.
SUDEP Action strives to help highlight and prevent the 21 deaths a week in the UK from epilepsy. The national charity represents a community of bereaved families, supported by a network of health professionals, researchers and industry specialists.
If you have epilepsy, find out more about epilepsy risks and how to reduce them.
If you have been bereaved by epilepsy, find out more about SUDEP Action's specialist bereavement service.
Disclaimer: The views expressed on this webpage are those of SUDEP Action and do not necessarily represent the views of all those in the Epilepsy Coalition or those who have signed up to the letter.