SUDEP Action has launched its Stay Smart campaign for National Epilepsy Week encouraging people with epilepsy to register for a new Safety App. The technology, EpSMon, is designed to help people with epilepsy assess their risks in between visits with doctors.
SUDEP Action Chief Executive Jane Hanna said: “People may only see a doctor once a year for their epilepsy. People live busy lives and our National Epilepsy Week Stay Smart campaign is designed to help people manage their risk the rest of the time. EpSMon is designed to help people be 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. ”
The risk of fatality for most people with epilepsy is low, but the risk factors are poorly misunderstood in the community. Research commissioned by charity SUDEP Action and funded by K’tys Fund found that many people who died were not in contact with their doctor in the year before they died even though their risk factors had worsened.
EpSMon was created by a team of partners based at Plymouth University, SUDEP Action, Cornwall Foundation NHS Trust and Royal Cornwall Hospital.
There are more than 600, 000 people with epilepsy in the UK, with 87 people diagnosed with the condition every day. Epilepsy claims at least 1,200 lives in the UK every year, at least 600 of these are Sudden Unexpected Death in Epilepsy (SUDEP). Research shows that about 42% of these deaths may be preventable through better management of known risk factors.
The National guidelines encourage people with epilepsy to attend regular reviews with their GP, but this may only be once in a year. The app contains guidance to help people better understand SUDEP and the factors which may affect their risk. It will show which risks are getting better, which have worsened and which have stayed the same so people can show this to their GP.
The app cannot guarantee that people are never at risk, but it can help them self-monitor and take action if needed. It will help people decide whether to seek help earlier than their next planned visit and make them aware of why and when a medical review of their epilepsy is important.
If you would like to register your interest in EpSMon and receive further information regarding its release, please visit www.sudep.org/epilepsy-self-monitor
Coming soon to iPhone (June, Predicted) and Android (Winter 2015, Predicted).
For more information about epilepsy and risk visit www.sudep.org
Useful references
Shankar R, Newman C, Hanna J, Ashton J, Jory C, McLean B, Anderson T, Walker M, Cox D, Ewins L Keeping patients with epilepsy safe: a surmountable challenge? BMJ Qual Improv Report 2015;4:u208167.w3252 doi:10.1136/bmjquality.u208167.w3252http://qir.bmj.com/content/current
Shankar R, Cox D, Jalihal V, Brown S, Hanna J, McLean B. Sudden unexpected death in epilepsy (SUDEP): development of a safety checklist. Seizure Eur J Epilep 2013;22(10):812-17.
Shankar R, Jalihal V, Walker M, Laugharne R, McLean B, Carlyon E et al. A community study in Cornwall UK of sudden unexpected death in epilepsy (SUDEP) in a 9 year population sample. Seizure Eur J Epilep 2014;3(5):382-5.
Sudep Action
SUDEP Action works to prevent deaths from epilepsy. It is a reporting and support centre for all epilepsy deaths. The charity is the leading voluntary organisation in the UK and internationally on Sudden Unexpected Death in Epilepsy (SUDEP) and other epilepsy related deaths. SUDEP is when a person with epilepsy dies suddenly and unexpectedly and no other cause of death can be found at post-mortem. SUDEP Action works with leading experts to reduce unnecessary deaths from epilepsy through research education and awareness.
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I can’t help thinking that such awareness, monitoring and attention might just have saved our sons life. I’d commend this strongly to everyone!
on May 18, 2015 at 10:18 am John hirst