Plymouth University, Cornwall NHS Foundation Trust and Cornwall Royal Hospital and Oxfordshire-based charity SUDEP Action are delighted that EpsMon – the world’s first self-monitor app and developed by this partnership – is the winning solution to the international challenge launched by Epilepsy Foundation of America. The challenge was for a method to reduce the risk of seizures with the purpose of preventing Sudden Unexpected Death in Epilepsy (SUDEP).
The SUDEP Institute challenged participants to come up with ideas for a method of intervention to reduce the risk of seizures, especially convulsive or tonic-clonic seizures, with the purpose of preventing SUDEP. Over 300 participants registered for the challenge, and they submitted 83 solutions from 25 countries.
EpSMon is a digital version of a SUDEP and Seizure Safety Checklist for clinicians. It encourages people with epilepsy to check their condition and overall wellbeing every three months by answering a series of questions which flag up any changes or increasing risks they need to be aware of; encouraging them to then seek advice from their doctor.
SUDEP Action are the only UK epilepsy charity dedicated to the specialised support and involvement of those bereaved by epilepsy. They are committed to reducing the number of potentially avoidable epilepsy deaths each year, both in the UK and internationally.
Jane Hanna CEO of SUDEP Action, who founded the charity in 1996 following the sudden death of her partner Alan, aged 27, said:
“We know that awareness and management of risk in epilepsy in the community is extremely neglected. Bereaved families have been waiting 20 years for this information to be available to help people reduce risk. The EpsMon project is funded mainly by bereaved families and particular thanks must go to Kt’s Fund that funded SUDEP Action’s work in the South West following the sudden death of Katie Hallett, a young nurse. We are delighted that bereaved families across the UK are continuing to invest in the project and that EpSMon is free and will be available for people with android phones on March 14”.
Dr Craig Newman, Senior Research Fellow and Mobile Health Tech Innovations Lead at Plymouth University Peninsula Schools of Medicine and Dentistry, said:
“Health apps are a growing phenomenon and have huge potential to transform how patients and their clinicians manage long term health conditions. We are pleased that not only is this app making a difference to people’s lives, but that it has been recognised for doing so. It is a true team effort.”
Liz Hollingsdale, who set up Kt’s Fund with her husband Bob, following the death of her daughter Katie said:
“Katie was such a caring and thoughtful person. A beautiful daughter, a wonderful sister and an amazing friend. This is such a fitting tribute to her, she would be overwhelmed at what has been achieved in her memory. I would like to thank the trustee`s and supporters of Kt`s fund who have worked so hard to raise the money to support this project. My thanks also to SUDEP Action for giving us the opportunity of working with them. Our memories of Katie will be with us always.”
Dr Rohit Shankar, Consultant in Adult Developmental Neuropsychiatry, Cornwall Partnership NHS Foundation Trust,added:
"Really pleased as it's a big step in the right direction of new horizons and new hopes for EpSMon in the interests of the safety of patients with epilepsy world wide."