A mother’s perspective, by journalist Caroline Scott

If I hadn’t understood his high risk of SUDEP I may not have pushed quite so hard.

The countless visits to A&E with facial lacerations after seizures should have raised alarm – research shows that multiple presentations at A&E should act as a red flag and initiate a neurology referral for a medication review. In practice this never happened, and doesn’t happen for countless epilepsy sufferers across the country.

There are many reasons too few people – including healthcare professionals – know about sudden death in epilepsy. Unlike other neurological conditions, epilepsy has a long history of being shrouded in secrecy and shame which has been compounded by a historic failure of specialist services to properly manage a condition that affects 600,000 people.

Neurologists are few and far between; depending on where you live you may not see one at all, and neither doctors or epilepsy nurses routinely talk about SUDEP – either out of ignorance or a misplaced fear of alarming patients – even though NICE guidelines insist everyone within epilepsy should be warned of the risks.

Given the choice, most people would really like to be in possession of the facts. And those facts are stark: Every week, 21 people with epilepsy die — some from injuries sustained during seizures, but the majority during the seizure itself. No one knows for sure what causes it – though research is funding scientists to study parts of the brain that control breathing and heartbeat as well as patterns of brain activity which temporarily ‘switch off’ certain areas of the brain after some seizures and could lead to SUDEP.

The risk rises sharply if you are male, aged 20-40 and one of the 60% of people with epilepsy who have tonic clonic seizures – as the number of GTCS increases, so does the risk of suddenly dying.

Three or more seizures a year can increase the risk by up to 15 times but conversely, the risk reduces almost to zero if seizures are well controlled. SUDEP Action estimates that with the right medication around half those deaths are preventable.

Yet shockingly, 1,000 grieving families on the Epilepsy Deaths Register, a platform for reporting all epilepsy deaths (initiated by SUDEP Action), had not heard of SUDEP before their loved ones died and so did not get a chance to review their child’s medication or insist on a second opinion.  Most considered epilepsy a ‘benign’ condition rather than a silent killer which proportionately kills ten times more people than Asthma.

Crucially, the media – my profession – doesn’t report any of this often enough. SUDEP affects  just as many young people as sudden cardiac death but almost never makes headlines and attracts far less funding. Ten times as much money is poured into cardiac research, while the utter devastation and traumatic grief for bereaved families is exactly the same.

One of the confusing things about SUDEP is that some people can have multiple seizures and not die, while others die after only their second or third seizure and sometimes before any medication has been prescribed. Until we know more, the only safe path is to use the EpSMon app and ask for a neurology review when necessary.

Both Rupert and I are keen to share these pictures of what epilepsy looks like – partly to show that this ‘hidden’ disability isn’t actually all that hidden. He wears his scars every single day and lives with the side effects of the medication he will take for life. But most people don’t understand very much about epilepsy or how it disrupts and ends lives. We need to change that.

Everything I know I owe to SUDEP Action and the families who have selflessly and so bravely devoted so much of their time to bringing SUDEP out into the open.

Former SUDEP Action CEO Jane Hanna told me last year: ‘What is truly remarkable is that families whose children have died suddenly all around the country, who are themselves suffering traumatic grief, pay tribute every day to their loved ones by focusing on the beautiful young people whose lives can be saved’.