The silent epidemic of young people who go to bed – and never wake up

Margaret and Kevin Corrigan were fast asleep when in the early hours of January 7, 2018, Kevin’s mobile rang.

It was a friend of their son, Shane, 23, who had been diagnosed with epilepsy three years before. ‘She said Shane had had a seizure and was making a noise ‘like a horse’.’

Margaret says: ‘We told her not to worry, he’d be fine in a few minutes and to let him sleep.’

But shortly after the call, Shane had another seizure from which he did not regain consciousness.

His flatmates called an ambulance, which arrived quickly, and Margaret and Kevin threw on clothes and sped 20 miles from their home in Chalfont St Peter, Buckinghamshire, to Shane’s London flat.

They had almost reached him when a policeman called, telling them to go straight to nearby Royal Free Hospital, where he had been taken. 

‘Kevin asked: ‘Is he OK?’ ‘ Margaret recalls. ‘But he didn’t answer. At that moment I felt as if someone had reached into my heart and ripped it out.’

Neither paramedics nor doctors could save him. ‘There were ten people still working on him when we got there,’ Margaret says. ‘I remember screaming: ‘Stop hurting him.’ 

And the doctor said: ‘We’re not hurting him, but we’re not saving him either.’ He told us the most likely cause of death was SUDEP. And we thought: what’s SUDEP? It was the first time we heard the word.’

Every week in the UK, on average 21 people with epilepsy die — some from injuries sustained during seizures, but the majority during the seizure itself from SUDEP or Sudden Unexpected Death in Epilepsy, which nearly always happens at night. 

And most of those deaths are in young people, aged between 20 and 40. Each one is a catastrophic bereavement, and compounding that tragedy is the fact that many SUDEPs — around half of them, it’s estimated — are preventable. Yet neither patients nor families are being told how to reduce the risk. As a consequence, hundreds of young lives are lost needlessly every year.

Unlike other neurological conditions, epilepsy has a long history of being shrouded in secrecy and shame and many of those affected, fearing social stigma, still feel compelled to keep it hidden.

Top professor learned of issue after son died 

Martin Elliott is a professor of cardiothoracic surgery, University College London. His son Toby, 26 a film editor at NBC News, died during the night in 2009. Martin says:

When Toby died of SUDEP (Sudden Unexpected Death in Epilepsy), neither I nor my colleagues — five other professors of various medical specialities — had heard of it.

But perhaps because of historical stigma, epilepsy has received little publicity and less research funding than other diseases.

Sudden cardiac death in young people kills similar numbers yet has received much more attention, probably because it occurs during the day and because it sometimes happens in public or to famous sportsmen.

Ten times as much money goes into cardiac research.

Martin Elliott is a professor of cardiothoracic surgery, University College London. His son Toby, 26, above, a film editor at NBC News, died during the night in 2009

More money would help save lives and minimise distress but we can only hope to do that if we can make people aware of SUDEP’s existence and learn what we can do to prevent it. I wish I had known more.

Toby was talented, creative and with a laugh that filled a room. We often wonder what he would be doing now.

Who knows? All we know is that we miss him so much, every day and in every way.

 

At the same time, there has been a long-term failure of specialist services adequately to manage a condition that affects 600,000 people — more than twice as many as Parkinson’s disease, multiple sclerosis and motor neurone disease combined. The loss of so many young lives is a devastating reflection of these failings.

Epilepsy is caused by uncontrolled bursts of electrical activity in the brain — sometimes related to a structural abnormality but for 65 per cent, the reasons are unknown.

There are four main types and at least 40 kinds of seizure. SUDEP generally happens in the 60 per cent of epilepsy sufferers who have a history of generalised tonic-clonic seizures (GTCS) — which cause a sudden stiffening of muscles followed by loss of consciousness and rapid limb jerking.

Boys are most at risk, especially those diagnosed before the age of 17, who have poorly-controlled or worsening GTCS, particularly if these happen at night. Yet despite the numbers of young lives lost, epilepsy is poorly understood, and research desperately underfunded — it consistently receives the least government funding for research of any neurological disease (£21 per head compared to £234 for Parkinson’s, for instance).

‘People understand that asthma or diabetes can be dangerous because the information is everywhere,’ says Margaret, 54, who works for a charity.

‘But the stigma attached to epilepsy means people don’t talk about it. And you’re not told at diagnosis that seizures can be dangerous. When you’re not told . . .’ She falters, puts her hands over her face and cries.

‘You just presume there’s nothing to be told about. You go on blindly, not understanding the risks. I don’t believe that would happen with any other condition.’

In his 2001 annual report on the state of public health, the then Chief Medical Officer Sir Liam Donaldson reflected that ‘epilepsy has remained in the shadows for decades’.

Despite five major government reports since 1953 flagging up gaps in care, services remained poor and patchy. He found that people with epilepsy suffered social stigma and lack of focus from health professionals compared with other chronic diseases.

As a consequence, he concluded that young adults were dying unnecessarily.

The first national audit of epilepsy-related deaths, which followed in 2002 led by the charity SUDEP Action, found that there were more than 1,000 epilepsy deaths a year — 600 from SUDEP — and that up to 42 per cent of these were preventable.

‘We found that there was poor access to medical care, SUDEP deaths were not being recorded by coroners, and that the risk posed by seizures wasn’t communicated to or understood by patients,’ says CEO Jane Hanna, who formed the charity with four mothers who had all lost children in their 20s to SUDEP.

Jane Hanna’s partner Alan Pring, a criminal law barrister, died of SUDEP in 1990 when he was 27. ‘Having been reassured that epilepsy was a benign condition, the shock of his sudden death after his fourth tonic-clonic seizure was overwhelming,’ she says.

The result of the audit was new NICE guidelines in 2004, which clearly set out that everyone with epilepsy should be warned about SUDEP risk.

Yet 20 years on from the audit — and despite report after report highlighting staggering gaps in care — experts have told Good Health that little has changed and that as the population grows, more people, mostly young, are dying needlessly from their epilepsy.

Unlike other sudden deaths — SIDS (Sudden Infant Death Syndrome: 200 deaths a year) and SADS (Sudden Arrhythmic Death Syndrome: 500 deaths) — there is no fee for SUDEP to be investigated by coroners’ inquests so death rates can only be estimates. The most recent estimate, based on population figures, are that 1,400 will die of their epilepsy in 2022, 720 from SUDEP.

Despite NICE guidelines that call on doctors to inform patients of the risk, 60 per cent of more than 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.

‘The real challenge is that most people think epilepsy is benign,’ says Rohit Shankar, a professor in neuropsychiatry at Plymouth University and consultant in adult developmental neuropsychiatry at Cornwall Partnership NHS Foundation Trust.

‘Everyone knows asthma is dangerous, yet epilepsy is a silent killer which [proportionately] kills ten times more. And those are just the ones we know about.’

Shane Corrigan was aged 20 and studying politics and economics at Southampton University when he had his first seizure in his student house in 2014.

As Kevin, 61, a property director, had health insurance, Shane saw a consultant neurologist in London privately and was prescribed a first-line anti-epileptic drug (AED), lamotrigine.

‘Not knowing when or where he’d have a seizure was a huge emotional burden to carry,’ Margaret says. ‘But he was seizure-free for almost a year, then he collapsed playing golf. He was furious because it meant he couldn’t drive.’

The following year, 2016, Shane was ‘hammered’ by seizures — as many as three a month — and his AED dose was increased. He had none for a year while he studied for a masters degree, but in October 2017, by now an assistant surveyor, he had a seizure at work, knocking out two teeth.

‘That was devastating for him,’ Margaret says. ‘His consultant switched drugs [to another AED, levetiracetam] but Shane thought he was also having night-time seizures. He’d wake up with a headache and blood on his pillow and his tongue was sore.

‘We know now this is a classic sign of night-time seizures. But we thought he was safe because he was in bed,’ she says. ‘I worried about him hurting himself. But did we ever think a seizure could take his life? Never.’

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.

A study published in the British Medical Journal in 2021 found that the number of deaths increased by 69 per cent between 2004 and 2014.

Separately, a study in 2014 by Professor Shankar found that 90 per cent of those who died over a nine-year period were having GTCS, and that their seizure frequency had increased during a three- to six-month period before they died.

Despite these worsening and dangerous symptoms, only 19 per cent were having regular checks with a specialist, as recommended for all epilepsy patients, according to his report. (This was funded by SUDEP Action and the family of 20-year-old Katie Hallett who died of SUDEP in 2006, having waited two years to see an epilepsy nurse.)

Crucially, the financial incentive for GPs to monitor people with epilepsy annually (in the same way that they monitor other chronic diseases such as heart failure, diabetes and asthma) was removed without consultation in 2013.

‘People with epilepsy were let down — with far-reaching consequences since those not attending regular checks are often at highest risk,’ says Professor Shankar.

The toll of this cycle of neglect has been devastating. A 2021 report (MBRRACE) on mothers with epilepsy makes painful reading — despite warnings, deaths of mothers and their babies as a result of SUDEP almost doubled in three years. Most who died had clear risk factors for SUDEP — ie, worsening seizures — but, shockingly, doctors had not discussed these with the mothers, and none had had a medication review.

But while more research is needed to understand why some people suffer SUDEP and not others, scientists now understand how it happens.

A multinational study published in Lancet Neurology in 2013 looked at SUDEP deaths in hospital when the patients were already undergoing continuous monitoring via EEG (brainwaves), ECG (heart rhythm) and video.

‘Following a GTCS, patients developed rapid breathing, followed by irregular, slow breathing and slowing of heart rhythm,’ Lina Nashef, a consultant neurologist at King’s College Hospital, London, and one of the authors, explains. ‘In some, this led to death within a few minutes after the seizure. In others, an initial partial recovery was followed by a more gradual fading of respiration, perhaps aggravated by being prone [lying face downwards].’

One of the study’s key findings was that being alone during a seizure is a key risk factor for SUDEP. ‘The patients who died were on units not adequately supervised at night and attempted resuscitation was very late, unlike in those who survived, where it was immediate,’ Dr Nashef explains.

‘While the risk is greater in those with a history of more frequent seizures, it can also happen in people who have had few. It is therefore important that this information is shared with anyone with a history of seizures.’

As well as regular medication reviews, the latest NICE guidelines advise people who have night seizures to use audio monitors. Studies by Professor Shankar’s team suggest a simple baby monitor — a radio system that monitors breathing and sound during sleep — could reduce SUDEP by 60 per cent by alerting others to a crisis.

In future, long-term seizure tracking technology may ultimately lead to better control for all. A small implant under the scalp that records brain activity continuously is being trialled by a team at the Institute of Psychiatry, Psychology & Neuroscience at King’s College London, led by Professor Mark Richardson.

The hope is that knowledge of seizure patterns will improve care for the 33 per cent of patients whose epilepsy hasn’t yet been controlled by medication.

Dr Rhys Thomas, an honorary consultant in epilepsy at the Royal Victoria Infirmary in Newcastle upon Tyne, who is co-leading the implant trial, says ‘continuous monitoring in real life rather than a hospital will tell us more about seizure patterns, triggers and frequency — particularly during sleep which will help predict SUDEP and save lives’.

Two weeks ago the charity Epilepsy Research UK announced the cause and prevention of SUDEP will be its top research priority.

But Jane Hanna points out that lives will continue to be lost until epilepsy features in government strategies to improve health, locally or nationally. She and bereaved families recently met MPs at Westminster to try to move epilepsy and SUDEP higher up the health agenda.

‘For the bereaved, the failure [of government] to listen feels like deep neglect,’ she says.

‘What is truly remarkable is that families whose children have died suddenly at home 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.’

And that includes raising awareness. Most heard the word SUDEP for the first time after their children had died. The parents of Descendants actor Cameron Boyce, who died of SUDEP in 2019 aged 20, had never heard of it until they read it in the coroner’s report.

Cameron was diagnosed with epilepsy at 16 and had nocturnal seizures which his parents assumed were ‘not too debilitating because they happened at night’. His mother Libby thought ‘the worst that would happen was that he’d wake up with a headache’.

For the Corrigans, like so many others, the shock and pain of losing their child doesn’t heal.

‘You just get better at covering it,’ says Margaret.

In August, the couple cycled more than 500 miles from London to Shane’s grave on Achill Island, off the west coast of Ireland, to raise awareness of SUDEP.

And every October they join a walk with other bereaved families, each wearing a purple sweatshirt bearing the name and age of their child.

‘Another parent who didn’t know about SUDEP until he found his 20-year-old daughter dead said: ‘Can you imagine this happening with any other disease?’ It’s like a coach load of youngsters going over a cliff every week,’ says Margaret.

‘More than 700 more families who had no idea this could happen will join us next year — yet still it feels as though no one is talking about it.’

A free app, EpSMon, funded by bereaved families, contains guidance to help people understand SUDEP and manage their risk.