I wrote about the urgent problem of sudden death in epilepsy in the late 1980s before SUDEP was defined or accepted. I worked with the charity as a scientific advisor from the early 1990s and was honoured to be asked to chair the organisation in 2010. I’m a former consultant neuropsychiatrist at Cornwall NHS Trust; Convenor of the first international research workshop into SUDEP and Co-Chair and editor of Epilepsia: Sudden Unexpected Death in Epilepsy (1995); Co-author of the National Sentinel Clinical Audit of Epilepsy-Related Death (2002); former Chair Epilepsy Task Force; Co-Founder of Epilepsy Research Foundation (now Epilepsy Research UK); former Chair of the British Epilepsy Association (now Epilepsy Action).
A qualified social worker by profession with 40 years’ experience in the charitable, private and local government sectors, spending the last 30 of those in senior positions. I was Chief Executive of Epilepsy Society for 13 years retiring in September 2013. I became a trustee of SUDEP Action in October that year after being involved with them professionally for many years.
Chair of SUDEP Action; Chair of SUDEP Research Initiative
Our son James died after an epilepsy seizure when he was 21. He had just graduated and was about to set off on the big adventure we call life. Until that morning I had accepted that his epilepsy was inconvenient but never thought it was seriously life threatening. Mixed with the wave of sadness I was massively angry that we didn't know, and frustrated that I could perhaps have done something about it. I searched to understand, ran marathons to raise money (and burn off some of the emotion) and worked with a number of epilepsy charities to try to help prevent such loss in the future. SUDEP Action found a special place with me because its mission matches exactly with mine. All the people associated with it are hugely committed, working hard to provide support, campaign for greater understanding and recognition and to raise funds to help research.
Vice-Chair of SUDEP Action
Professor Mike Kerr studied medicine in Bristol (UK), General Practice in York and Psychiatry in Cardiff. He came to Wales in 1990. His clinical practice is in the epilepsies associated with learning disability and in the assessment and treatment of epilepsy and psychiatric disorder. He has been closely associated with initiatives in improving the public health of people with an intellectual disability including developing the Cardiff Health Check, which is used across England and Wales. Academically he has published widely on healthcare, epilepsy and intellectual disability and held research grants from many funding bodies. He is a medical advisor for the Dravet Society UK. He is chair of the International League Against Epilepsy (ILAE) commission on psychiatric aspects of epilepsy. He has previously been appointed as a clinical Champion for Wales. In 2015 he was appointed as an Ambassador for Epilepsy by the International League Against Epilepsy. In 2019 he was awarded the Excellence in Epilepsy award of the UK chapter of the ILAE.
My brother John, diagnosed with epilepsy at university, sadly died from SUDEP in 1995 aged 41. Diagnosed myself at 26 in 1984, I nearly lost my life to epilepsy in 1999. I studied it vocationally at university, helped SUDEP Action with leaflets, gave interviews on BBC Radio 4 and contributed towards the 2002 Sentinel Audit which led to the present NICE Epilepsy guidelines. I’ve been a member of the Epilepsy Action Research Network team, who assess funding bids for epilepsy research throughout the UK. During the last five years I’ve also been a member of the PAB of the Worldwide RADAR-CNS project. This explores the benefits of wrist worn wearable devices and smart phones, to help reduce relapse within Epilepsy, MDD and MS. It's jointly led by King’s College London and Janssen Pharmaceutical NV. As a SUDEP Action Trustee since 2004, I’ve used my experiences in Quality Assurance and knowledge of epilepsy to present to medical audiences and patients, the advantages of being open about epilepsy from a personal perspective and the risks of SUDEP, in a professional and sensitive way.
After the shock and grief of our daughter Lucy's sudden death at the age of 15, my wife and I found the support provided by SUDEP Action to be invaluable. Two years later I was asked to consider becoming a Trustee for the charity. I have now fulfilled that role for almost 20 years and have found it to be an ongoing source of therapeutic help in my bereavement. To be able to provide some input to such an excellent organisation is something relevant and worthwhile that I can do in Lucy’s memory. My particular motivation is the continuing hope that by raising awareness of the risk of death from epilepsy we will eventually see a significant number of the avoidable deaths actually being prevented.
Treasurer of SUDEP Action
My youngest daughter, Emily, who only had four seizures, died aged 19 at Leeds University in 2012. My husband and I had no idea that Emily could die and had never heard of SUDEP. The shock and grief were overwhelming but we have found that supporting SUDEP Action has given us a positive focus for our grief. Our eldest daughter also benefitted hugely from the counselling she received from the charity. I firmly believe that had we been educated about SUDEP then Emily might be alive today. My background as a Chartered Accountant and my various volunteering roles as secretary and treasurer for small societies will stand me in good stead for my trusteeship of SUDEP Action. These are exciting times for the charity as the medical profession and the wider world begin to listen and engage with both the charity’s message and it’s work and I am excited to be part of the team.
I retired from working as a GP in a busy inner-city practice in Oxford in 2011. For many years I have been interested in women’s health, especially research into perinatal mental health. I have worked with the Confidential Enquiry into Maternal Death for two decades and am now a writer editor for Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries in the UK (MBRRACE-UK), the national programme of work investigating maternal deaths, stillbirths and infant deaths. From 2014-17 I was the Royal College of General Practitioners (RCGP) Clinical Champion for Perinatal Mental Health. In 2016 I became RCGP representative to the Valproate Stakeholder Network, coordinated by the Medicines and Healthcare products Regulatory Agency (MHRA). The group developed my interest in epilepsy and the impact it has on the lives of individuals and families. From 2020 I have been working with NHS Innovation on the valproate safety implementation group (VSIG). Following the regulatory changes for prescribing valproate in 2018, I worked with Professor Sanjay Sisodiya from UCHL to develop the Pan-College guidance for valproate use, updated in December 2020. I have also represented the RCGP in maternity care and FGM. I am a Fellow of the RCGP, Member of the Royal College of Physicians in London; and recipient of the RCGP President’s medal in 2017. I am also Chair of Trustees at the Lady Nuffield Home, a charitable care home in central Oxford.
My middle son died aged 24. He had suffered badly from epilepsy for many years, but we had no idea that he was at risk of dying in the way he did. Our family had not heard of SUDEP, but we gradually became aware that, not only had he been massively at risk, but there was this wonderful charity, working so hard to raise awareness of the risks and to mitigate the chances of it happening. It was also providing bereavement support to the surprisingly large number of families that had lost a loved one. I decided that I wanted to get involved with the charity. Initially this included hosting coffee club meetings, and holding events to raise the much needed funds that the charity requires to allow them to undertake all the work and support that they provide. I have spent a career in the reinsurance world, working for a variety of broking firms. My career provided me with experience of dealing with people and an understanding of the financial disciplines necessary to run a financially sound business. Both of these capabilities will, I believe, help me in my role as a Trustee of this charity that has come to be so important to me and my family.
My elder sister, Catherine, died from SUDEP at age 29, in 1989. This was before SUDEP Action or Epilepsy Bereaved had been established and when information was almost impossible to find. I know now how much it would have helped us to have the unique support and access to information which SUDEP Action provides. My mother became involved in the family support side of the Charity as a volunteer, and I first became involved with a group of active volunteers in the North West who were raising funds and awareness. I then became a Trustee in 2010. My background is as a speech and language therapist and I work for the NHS and in the voluntary sector, so I have some relevant professional as well as personal experience. My main role as a Trustee is to maintain close links with the specialist counselling and bereavement support service that SUDEP Action provides. I have seen the huge positive difference that SUDEP action makes, not only in terms of the support it provides bereaved families, but in the health promotion, awareness raising and research elements to its work, which mean that SUDEP is now recognised internationally, and people living with epilepsy and those close to them are beginning to get access to the information they deserve.