My daughter might have lived if doctors had told us the truth

The first time Martin and Amanda Walker came across the term ‘SUDEP’ was after the death of their daughter.

‘I had never heard of it, or been told about it,’ says Amanda.

Amber died aged 22, alone in her bed, in 2023.

Amber was ‘extremely entertaining,’ says Martin. ‘She was high-spirited, clever, totally had a mind of her own. She loved to sing and act.’

She had her first seizure aged nine but wasn’t diagnosed with epilepsy until just before her 13th birthday. Neither she nor her parents were ever told about Sudden Unexpected Death in Epilepsy (SUDEP).

‘Very few people have even heard of it,’ Amanda says. ‘Information is just not out there. We regularly saw consultants with Amber, she had great care, and that whole time nobody ever mentioned SUDEP. Not once.’

Epilepsy is not a fatal condition, yet in the UK, approximately 1,200 people die from causes related to epilepsy each year, and SUDEP deaths are reported to account for up to 50% of those.

Research into SUDEP risks, and its mitigating factors, has existed for years, yet hundreds of families continue to report hearing about it only after their loved one has died. 

After Amber’s death, Amanda met with Amber’s consultant to ask why he had omitted such crucial information. ‘He just couldn’t give me an answer,’ she says.

The consultant implied that the conversation around SUDEP was ‘difficult’. ‘But so is telling someone they’ve got cancer,’ says Amanda. ‘You don’t just avoid it.’

Why have doctors avoided mentioning SUDEP?

Jane Hanna OBE is one of the five founder members of charity SUDEP Action, which she formed after losing her then partner, Alan, to SUDEP in 1990 – he was 27.

She says that for a range of reasons neurologists have struggled to communicate SUDEP.

Fear and misunderstanding around epilepsy are a factor. Stigma dates back to the late 19th century (when epilepsy was considered a supernatural, rather than neurological, condition) and still casts a shadow over how it and its risk factors, is understood and discussed.

As late as the early nineties, ‘the overriding message to people with epilepsy and their families was that this was a bread and butter neurological condition, not anything to worry about,’ says Hanna. 

Many SUDEP deaths are avoidable

Research driven by the charity (then known as Epilepsy Bereaved) as well as national reports including Epilepsy Death in the Shadows, welcomed by then Chief Medical Officer Sir Liam Donaldson, challenged this perception. In 2000, SUDEP Action secured government funding for the very first national inquiry into epilepsy deaths. The report revealed that roughly 40% of epilepsy deaths are avoidable; more recent research puts this figure at 80%.  

People with epilepsy were, ‘dying of complacency’ says Hanna, ‘and being treated differently from other people with risky, long-term conditions – from conditions that were less risk than epilepsy’.

A national report found that SUDEP was only communicated in 1% of medical records examined. 

A definition of SUDEP was finally included in the UK national clinical guidelines in 2004, as well as directives for SUDEP and epilepsy care and properly recording epilepsy deaths.

Both Hanna and Martin and Amanda are passionate that information about SUDEP must be given to patients early on in their diagnostic journey, especially as ‘it doesn’t have to be [bad news],’ says Martin, ‘because many SUDEP deaths are preventable.’ 

‘There is this problem before death that people living with the condition and families aren’t empowered,’ says Hanna, ‘and then there is this problem after death that families are very shocked by the sudden realisation about what they were dealing with.’ 

Sandie and Becky’s story

Sandie Scriven’s daughter, Becky, died of SUDEP aged 11 in 2004. A paediatrician agreed to an EEG and then an MRI to ‘prove wrong’ Sandie’s strong belief that Becky was suffering from epileptic seizures. The results of the MRI were due on May 6 – Becky died two days before.

‘It was the police who called us to say that Becky had died from SUDEP,’ says Sandie. ‘We felt totally let down by Becky’s GP, the registrar and the paediatrician – none of whom appeared to take us seriously or have any knowledge of epilepsy.’

Sandie continues to campaign for SUDEP awareness and is also adamant that information about it should be shared early on, enabling families to make ‘educated choices’. 

‘I have no doubt our lives would be vastly different if anyone had mentioned SUDEP risk while Becky was alive,’ she says.

Martin and Amanda’s plea

Knowledge of SUDEP may have also saved Amber. ‘Parents are already alarmed,’ says Amanda. ‘They need to know everything they can to protect their kids.

‘As a teenager, we were so careful with Amber – always chasing her, making sure she took her medication. We didn’t let her ride a bike or go swimming without someone watching. After she died, ‘Our first thought was: “why didn’t we know about this?”‘

Research indicates seizure control and reduction as the biggest mitigating factor for SUDEP risk. For this, medication is crucial – it’s largely agreed that up to 70% of epilepsies can be controlled by medication. 

This goes beyond simple drug regime compliance, however, especially when it comes to SUDEP. The key, says Hanna, is ‘getting the right medication at the right time. Knowing which meds are the most effective for which seizure types becomes really, really important.’

For Sarah

Last year, on March 10, we lost our beloved colleague Sarah Whiteley. Sarah was a fantastic journalist; she was Metro’s parenting columnist and a valued member of our first-person and opinion desk.

Sarah died aged 39 from SUDEP – sudden unexpected death in epilepsy. It is thought that every year around 1,000 people die from causes related to epilepsy.

With support from Sarah’s family, Metro is fundraising for two very important charities: SUDEP Action and Epilepsy Action.

Sarah was so incredible at helping other people share their experiences; she was a born storyteller and we hope to do her proud with this series, while raising money in her memory.

The Walkers claim that Amber was undermedicated at the time of her death. ‘Her toxicology report showed that one of her drugs was at therapeutic levels but a second drug was under. She should have been on more.’ 

A dose increase had been mentioned by one of Amber’s doctors but only after they had reassured Amber that she was ‘doing fine’. 

Knowledge is power

‘They never told Amber, “this is something you need to do”. If we’d known about SUDEP, we as her parents would have increased her medication, whether Amber wanted to or not,’ says Amanda.

‘In hindsight, there were red flags that Amber had a heightened risk of SUDEP,’ says Martin. ‘In the eight months before her death, she had six seizures, with four of them coming in a cluster, within an hour of each other – that was unusual for her.’ At 22, she was in the highest-risk age-group for SUDEP, which Hanna cites as 20-40.

For Sandie and her family, misinformation around epilepsy medication, combined with a lack of clinical knowledge, led to devastating consequences.

Becky was seen by a doctor who said that ‘seizure control medication would be out of the question and that if she had already been on epilepsy medication, he would have taken her off it,’ says Sandie. ‘We have subsequently found this information to be totally unfounded and extremely dangerous.’

What help is available today?

Today, SUDEP Action offers support and empowerment for bereaved families, continues to drive and track research and also works directly with clinicians. The charity has also partnered with the Cornwall Partnership NHS Foundation Trust to create the SUDEP and Seizure Checklist for the over 16s, which was integrated into GP’s software during the pandemic. 

According to Hanna, this (along with other measures such as the creation of an app for patients) has led to a significant rise in the number of neurologists talking to patients about SUDEP, which she puts down to having a standardised tool and confidence that ‘this is what everyone is doing’. 

These developments have come too late for the Walker and Scrivens families, as well as the hundreds of others like them, many of whom continue to seek help from SUDEP Action. Beyond grief counselling, the charity is involved in up to 70 epilepsy death inquests a year.