Our Trustees

“Our son James died after an epilepsy seizure when he was 21. Until that morning I had accepted that his epilepsy was inconvenient but never thought it was seriously life threatening. Mixed with the waves of sadness I was massively angry that we didn’t know this could happen. 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 losses in the future. SUDEP Action found a special place with me because its mission matches exactly with mine.”

“My clinical practice is in the epilepsies associated with learning disability and in the assessment and treatment of epilepsy and psychiatric disorder. I’ve 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. In 2015 I was appointed as an Ambassador for Epilepsy by the International League Against Epilepsy and in 2019 I received the Excellence in Epilepsy award of the UK chapter of the ILAE.”

“I wrote about the urgent problem of sudden death in epilepsy back in the late 1980s before SUDEP was even defined or accepted. I worked with SUDEP Action 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).”

“I’m 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 the 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.”

“My brother John, diagnosed with epilepsy at university, sadly died from SUDEP in 1995 aged 41. I was diagnosed with epilepsy myself in 1984, and in 1999 I nearly lost my own life. I studied epilepsy vocationally at university and helped SUDEP Action with leaflets and talks. In 2002, I contributed towards the Sentinel Audit which led to the development of NICE Epilepsy guidelines. As a SUDEP Action trustee since 2004, I’ve used my experiences in quality assurance and my knowledge of epilepsy to present to medical audiences and patients.”

“After the shock and grief of our daughter Lucy’s sudden death at the age of 15, my wife and I found the support of SUDEP Action invaluable. Two years later I was asked to consider becoming a trustee for the charity. I have now fulfilled that role for over 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 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 we’d 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. 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 stands me in good stead for my trusteeship of SUDEP Action.”

“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 Deaths 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). In 2016 I became RCGP representative to the Valproate Stakeholder Network, coordinated by the Medicines and Healthcare products Regulatory Agency (MHRA).”

“My son Tom died of SUDEP aged 24. He had suffered badly from epilepsy for many years, but we had no idea that he was at risk of dying. 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 to others. I discovered SUDEP Action provided bereavement support to a surprisingly large number of families and decided that I wanted to get involved.”

“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 received the support and access to information which SUDEP Action provides. I became a trustee in 2010. I work as a speech and language therapist for the NHS and in the voluntary sector, so my main role as a trustee is to maintain close links with the specialist counselling and bereavement support service that SUDEP Action offers.”