A MOTHER whose son died from a rare form of epilepsy has welcomed the launch of a new mobile phone app to help people manage their condition.
The charity Sudep Action launches its pioneering Epilepsy Self Monitor (EpSMon) today, which is designed to provide support to prevent sudden death in epilepsy (Sudep) – a rare occurrence, which affects one in 1000 people with epilepsy each year.
Users input what medicines they are taking and what activities they are involved in, so the app can measure their risk and dole out advice.
The app was hailed as a “major step forward” by campaigner Chris Jeans, whose son Stephen McClelland, 38, died in August 2010.
Chris, who lives in Mid Calder, said: “Stephen was diagnosed with epilepsy when he was about eight years old.
“He suffered many seizures and was constantly injured through falling out of bed on to his face, thrashing around on the carpet.
“He would then sleep all day following the seizures. He often had fits in the locked bathroom or locked toilet and we would have to break down the doors to get to him.
“He would often be rushed to the hospital when he had several seizures in a day.”
Chris, who now works as a development officer for Sudep Action, said the EpSMon would help patients take ownership of their condition.
She said: “It will help them be more proactive in managing their risk by highlighting what action they can take in the event of a risk factor worsening.
“It is a major step forward in risk prevention and will make patients comfortable in the knowledge that they are doing their utmost to try to look after themselves.”
Around one in 97 Scots suffers from epilepsy and the condition claimed 105 lives in 2013. Research shows about 42 per cent of those deaths may have been preventable through better management of known risk factors.
Dr John-Paul Leach, consultant neurologist for NHS Greater Glasgow and Clyde, said: “This puts some control back in patients’ hands – I believe patients do best when motivated and empowered.
“The best clinics allow people to make informed decisions about managing their condition.
“By informing users, this device encourages patients, carers and families to regularly consider ways of improving outcomes and thereby improve safety.”
Doctors and nurses can register to access their patients’ reviews on the app, which was developed by experts at Plymouth University, Cornwall Partnership NHS Foundation Trust, Royal Cornwall Hospital Trust and Sudep Action.
Jane Hanna, Sudep Action chief executive, said: “People may only see a doctor once a year for their epilepsy. This safety app is designed to help them manage their risk the rest of the time.
“EpSMon will make people aware of why and when a medical review of their epilepsy is important. It will flag up whether help should be sought earlier than planned because risks have worsened.”