THIS week I would like to take the opportunity to talk about the work of the brilliant SUDEP Action – the Oxfordshire-based epilepsy charity of which I am proud to be president.

SUDEP Action is dedicated to raising awareness of epilepsy risks, tackling epilepsy deaths and is the only UK charity specialised in supporting and involving people bereaved by epilepsy.

One in every 103 people in the UK live with epilepsy and, alarmingly, the condition kills as many people each year as asthma – a condition with a population nine times larger.

Fifty per cent of these deaths – more than 600 people – are a result of SUDEP or Sudden Unexpected Death in Epilepsy. That is more than four times the number of babies who suffer cot death.

Most at risk from SUDEP are young people aged between 20 and 40 and women who stop epilepsy medication during pregnancy.

Research has indicated that around 42 per cent of epilepsy deaths could potentially be avoided through actions such as improved seizure control, better medication taking, increased risk awareness and better engagement with services.

Although almost entirely funded by bereaved families, SUDEP Action are leading the way in addressing epilepsy deaths and have helped 11,000 people and 278 organisations in the past year alone. This has been achieved through providing bereavement support, counselling and dedicated research programmes involving bereaved families and professionals through the Epilepsy Deaths Register. The team also offer SUDEP and seizure safety training tools for GPs and ambulance crews and their industry-leading services have been used around the world.

The charity is now developing a tiny wearable device which could in the future save the lives of hundreds of young people each year. The choker-style gadget, is worn around the neck at night, alerts a nearby parent, partner or friend that their loved-one is suffering from a life-threatening event. This could include a pause in their breathing (apnoea) or a change their heart beat.

By sending a wireless signal to an alarm, the carer has enough time to put the patient into the recovery position, administer CPR, or call for help. Two million euros have been granted from the European Research Council (ERC) to carry out research towards the creation of the device and the charity hopes these will be available on the NHS to every young person that needs one within six years.

Hopefully this incredible tool will in the future save lives and provide reassurance for young people. Most importantly today, SUDEP Action are opening a conversation about a risk that for too long has been taboo and are leading the culture change required for SUDEP to be taken as seriously as cot death and chronic conditions like asthma.