SUDEP Action

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SUDEP Action celebrates international challenge win - bringing EpSMon to America to help reduce epilepsy risks and tackle sudden deaths

SUDEP Action’s world first Epilepsy Self-Monitoring app, EpSMon has won the prestigious Epilepsy Foundation international prize for innovation.  The challenge was for a method to reduce the risk of seizures with the purpose of preventing Sudden Unexpected Death in Epilepsy (SUDEP).

We were thrilled to announce the win to some of our supporters at this weekend's National Conference where over 90 families gathered as a united voice for those bereaved by epilepsy. It is because of the backing and determination of our families and supportive clinical teams that EpSMon was created, and we are delighted that it is being internationally recognised as a tool that can truely benefit people with epilepsy and potentially help save lives. 

EpSMon was developed by SUDEP Action, Plymouth University, Cornwall NHS Foundation Trust and Cornwall Royal Hospital. 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 developed and available for professionals who register with SUDEP Action for annual updates from a UK-wide development group of experts. It encourages people with epilepsy to check their condition against known risks.  The App asks people to answer a series of questions about their seizures and overall wellbeing 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.  EpSMon also checks that the user has received essential safety advice and that they are in touch with their doctor or nurse for a regular review. Females of child-bearing age are asked whether they have had pre-conception counselling with information given on why this is important.

Jane Hanna Chief Executive, founded the charity in 1996 following the sudden death of her partner Alan, aged 27. Jane has won national and international recognition for her leadership of the advocacy movement on epilepsy deaths since the charity was set up over 20 years ago. Jane commented:

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 from March 14“.

Arjune Sen, Consultant Neurologist and BRC Senior Research Fellow, John Radcliffe Hospital, Oxford commented:Epilepsy is a common neurological condition that, unfortunately, can associate with an increase in mortality. All efforts to try and reduce risk for patients with epilepsy should be welcomed and EpSMon helps address this key area through a novel, engaging and patient-centred approach. That EpSMon has been recognised by the Epilepsy Foundation of America will hopefully improve its reach and accessibility enabling more and more patients to benefit.”

Dr Rohit Shankar, Consultant in Adult Developmental Neuropsychiatry, Cornwall Partnership NHS Foundation Trust, one of the EpSMon partners, said: "I am really pleased as its 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”.

Dr. Craig Newman, Senior Research Fellow & Mobile Health Tech Innovations Lead at Plymouth University Peninsula Schools of Medicine and Dentistry, who is also one of the clinicians behind the creation of EpSMon 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.”

EpSMon is currently available on iOS but will launch on Android devices on 14 March. 

More information can be found about EpSMon here
Information about the SUDEP and Seizure Safety Checklist can be found here
You can read the announcement by Epilepsy Foundation America here