21st January 2021
Dear Ms Nadine Dorries,
Re: Excess preventable epilepsy deaths in the UK
We wrote to you on 15 July 2020 offering our help as two people with lived experience of traumatic bereavement following the sudden unexpected medical deaths of two young people.
We were delighted at that time that you had emphasized your commitment for rapid effective signposting of bereaved families, and also your emphasis on listening to families, which was at the heart of the Cumberlege report. We wrote again on 13 November 2020 to offer help following the publication of our Lives Cut Short report, with evidence and developments during the pandemic.
We are yet to hear from your office about exploring the potential for signposting since you offered this in your letter of 14 August 2020.
We have not been eligible to benefit from the £22 million for health charities or from the £4.2 million that was allocated to bereavement organisations that was distributed last summer.
Regardless of this, and the significant impact of the pandemic on the charity sector, we are piloting readily available solutions that can mitigate against the doubling of deaths; through the roll-out of the SUDEP and Seizure Safety Checklist and EpSMon app, and delivering specialised services and innovation to support disenfranchised traumatic grief. But this is slow given the escalating emergency; inadequate recognition and wider system support at this time.
For example, NHS Rightcare promotes these tools as ‘best practice’, yet due to the pandemic, implementation and dissemination of this important resource to local healthcare providers has been put on indefinite hold.
SUDEP Action works alongside epilepsy clinical leaders across the UK in tackling epilepsy deaths.
Before COVID-19 there were at least 21 epilepsy-related deaths a week – however we now fear this number has greatly increased due to the pandemic.
We know that between March-June 2020 there were 450 deaths that had COVID-19 and epilepsy on their death certificates. However, we await the ONS release of data on non-COVID-19 deaths and on excess mortality not related to COVID-19. We are hugely concerned about the data reported from LeDeR on the number of epilepsy deaths in people with learning disability, especially as it flags that Epilepsy is the second most frequently reported potentially treatable cause of death among this vulnerable group. The national inquiry on maternal mortality (MBRRACE) released last week, supported by SUDEP Action, found a doubling of deaths in pregnant women with epilepsy and their unborn babies. We previously identified such a dramatic rise in avoidable maternal deaths and submitted evidence to the Health and Social Care Select Committee, the All Party Parliamentary Group on Coronavirus & the National Neurosciences Advisory Group (NNAG) COVID-19 inquiries in which we predicted a further doubling of deaths through the pandemic.
This profound deterioration in mortality figures can be addressed through:
• Empowering clinicians and patients to use existing risk assessment tools
• Ensuring all patients have access to epilepsy specialist health care professionals
• Recognising expertise and signposting to SUDEP Action on national communications of, and engagement about, epilepsy mortality risk and patient safety, and bereavement from sudden medical deaths
The knowledge, skills and tools to address these issues exist (background attached) and need to be prioritised through Government in order to help prevent further avoidable epilepsy deaths.
We ask for a meeting with you as Minister for Patient Safety and for Bereavement to offer our help with a view to building back better through and following the COVID-19 pandemic and to ask for:
1) Access to an independent statutory inquiry where we can bring evidence about maternal deaths but more broadly evidence about excess deaths and the impact of bereavement during the pandemic. Delay for the bereaved will exacerbate trauma. State provision now for a listening phase will be helpful to support, learning and prevention that could help prevent future deaths.
2) As a matter of urgency that epilepsy health workers are safeguarded from redeployment.
3) Epilepsy related deaths are prioritised to be included in relevant Government health communications, in conjunction with information on patient safety to include risks on SUDEP and epilepsy mortality risks; signposting to existing epilepsy safety tools. This will mitigate, for example in the case of women with epilepsy, the risk of women stopping medications without knowing the reason why medications are important to them and their unborn child.
4) Epilepsy to be considered as an illustration in Government communications during the pandemic. There is an opportunity to immediately reverse professional and public misunderstandings resulting from the clear failure to tackle SUDEP and epilepsy deaths. SUDEP and epilepsy deaths mostly are unexpected and happen in people’s homes. Government and the media however focus on deaths in state settings, hospitals and care homes, but usually omit deaths in homes or any granularity on numbers, age or cause.
There is also an opportunity to reverse the cultural perception that saving lives and deaths are what happen only in hospitals. Such inclusion will reduce the stigmatization of people with epilepsy that still exists today. 1 in 20 (5%) will experience a seizure in their lifetime and it will be frightening. It takes up vast resources of A & E and escalating deaths at home because it is not understood. There are many individual family issues. During the pandemic access and support for medicines contribute to the deaths across children and adults. People with epilepsy are not supported in the community with a step up, step down system of care as their condition changes, or with roll out of the recommended patient safety tools that could improve self-management and triage. Children are bullied and have worse educational and life outcomes because it is not understood.
If epilepsy was named alongside cancer and heart disease when the Government communicates it would immediately send a message that all lives matter during the pandemic, and communicate the seriousness of the condition that has been so lacking over decades to NHS managers and the public. It would communicate that by keeping the NHS open it is available for pregnant women and young people (with epilepsy) as much as it is for protecting the vulnerable and the elderly.
5) For public access to data on non-COVID-19 deaths in epilepsy since March 2020 and the ages of these deaths. It is 11 months since the first lockdown, and we do not have that data still. Delay prevents learning and deeply undermines all efforts to tackle epilepsy-related deaths.
Attached to this letter we have provided, in greater detail, the background issues that lead us to these requests, which we hope will be helpful to you when considering these requests.
Yours sincerely,Jane Hanna OBE
, CEO, SUDEP Action (linked charity Epilepsy Bereaved) John Hirst CBE
, Chair of SUDEP Action (linked charity Epilepsy Bereaved) Phil Tittensor
, Chair of Epilepsy Nurses AssociationDr Rohit Shankar MBE
, Clinical Director Cornwall Partnership NHS Trust Hon. & Associate Cl. Professor Exeter Medical School Professor Tony Marson
, Professor of Neurology, University of LiverpoolDr Jon Dickson
, GP, Clinical Fellow, University of SheffieldProfessor Henry Smithson
, Professor of General Practice, University College CorkDr Brendan McLean
, Consultant Neurologist, Royal Cornwall Hospitals NHS TrustDr Judy Shakespeare
, Retired GPDr Melissa Maguire
, Consultant Neurologist, Leeds Teaching Hospitals NHS TrustProfessor Leone Ridsdale
, Professor of Neurology & General Practice, King’s College, LondonProfessor Mike Kerr
, Chair of the Psychiatry Commission - International League Against Epilepsy (SUDEP Action Trustee & Professor, Cardiff University)Dr Paul Morrish
, Consultant Neurologist, Great Western Hospitals NHS Foundation TrustDr Owen Pickrell
, Consultant Neurologist, Swansea University Medical SchoolProfessor Adrian Williams
, Consultant Neurologist, University Hospitals Birmingham NHS Foundation TrustDr Barbara Wysota,
Consultant Neurologist, University Hospitals Birmingham NHS Foundation TrustKim Morley
, Epilepsy Specialist Midwife/Nurse Practitioner, Hampshire Hospitals NHS Foundation TrustDr Michael Kinney
, Consultant Neurologist/Epileptologist, Belfast, Northern IrelandDr Elaine Hughes,
Consultant Paediatric Neurologist, King’s College Hospital NHS Foundation Trust