Digital Seizure Safety Checklist to Help Reduce Sudden Death
A recent study by Public Health England has found that deaths of people with epilepsy increased by 70% between 2001 and 2014.*
With deaths so high, a pioneering medical team in Cornwall developed an app to allow people with epilepsy to monitor their condition and health risk. The app has already won many prestigious awards in the UK and USA, including the 2016 HSJ Patient Safety award, 2016 BMJ Neurology awards, 2015 International League Against Epilepsy (ILAE) awards and 2015 Epilepsy Foundation US.
The EpSMon app is available for free on Apple and Android mobile and tablet devices, and was developed in a collaborative project involving specialists from Cornwall Partnership NHS Foundation Trust (CFT), Royal Cornwall Hospitals Trust, SUDEP Action and Plymouth University Peninsula Schools of Medicine and Dentistry**. EpSMon is currently one of the innovations being supported by the NHS Innovation Accelerator Programme; an initiative which aims to improve health outcomes and give patients access to the latest products, services and technology.
Dr Rohit Shankar, a Consultant in Adult Developmental Neuropsychiatry for CFT commented “The key to keeping people safer is to inform them of their risks and empower them to take charge of some of their modifiable risk factors while being aware of the negative influence of those factors which cannot be changed.
“People with epilepsy need to be treated as partners in their care. Sadly this does not happen often enough. Our recent research has shown that having structured, patient-centred discussions with patients of their risk and what factors lead to those risks, has paid dividends in the form of positive change influencing better outcomes.”
Bringing lifesaving information to the fingertips of adults with epilepsy, the EpSMon app enables service users to monitor their own seizures and wellbeing between medical appointments. The app also shows whether risk factors have improved or worsened, enabling users to seek medical help sooner if needed.
An estimated 1.16 per 1000 people with epilepsy die suddenly each year with around half of these from Sudden Unexpected Death in Epilepsy (SUDEP) **. Evidence has shown that many people who died from epilepsy were not appropriately accessing health services prior to their death. In Cornwall, research shows that people who have died are known to have had a worsening of risk factors in the three months prior to their death but only 20% were in contact with their specialist in the year they died. National reports and judicial inquiries have established many thousands of deaths might be avoided through improved awareness of risk.
The project was initially supported by KTs Fund, a trust set up by the family and friends of 20-year-old Katie Hallett, a children’s nursing student who died from SUDEP in January 2006. The project began with the creation of the SUDEP and Seizure Safety Checklist; a free clinical tool to support risk communication and management between clinicians and their patients****.
The SUDEP and Seizure Safety Checklist is a structured risk communication tool used in UK clinics to:
- help clinicians have a positive discussion with service users about epilepsy and risk assessment;
- support a patient-centred discussion of risk and focusing on whether known risk factors apply to an individual;
- help clinicians educate service users about possible lifestyle changes which might reduce risks;
promote risk management;
- create evidence of the impact of a treatment plan and demonstrate effective clinical governance, whilst enhancing individual safety and
- provide some assurance to bereaved families that every effort was made to reduce risk and prevent a fatality when a death occurs.
The EpSMon app was created as a digital, patient version of the checklist to allow a holistic approach to risk management. Future developments of the EpSMon app include medication observance tools and automatic flagging of a risk to a service user to their health teams. Use of the EpSMon app has been supported by a recent Cochrane review on SUDEP prevention and a National Institute of Health Research UK Systematic appraisal of emerging technologies for the diagnosis, treatment and management of epilepsy.