{"id":951,"date":"2025-04-26T12:00:00","date_gmt":"2025-04-26T12:00:00","guid":{"rendered":"http:\/\/www.troop956.com\/?p=951"},"modified":"2025-05-01T19:36:34","modified_gmt":"2025-05-01T19:36:34","slug":"doctors-said-our-daughter-was-doing-fine-weeks-later-she-was-dead","status":"publish","type":"post","link":"http:\/\/www.troop956.com\/index.php\/2025\/04\/26\/doctors-said-our-daughter-was-doing-fine-weeks-later-she-was-dead\/","title":{"rendered":"Doctors said our daughter was doing fine, weeks later she was dead"},"content":{"rendered":"
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\n\t\t\"Feature\t<\/div>
Amber died aged 22 (Picture: Martin and Amanda Walker)<\/figcaption><\/figure>\n

The first time Martin and Amanda Walker came across the term \u2018SUDEP\u2019 was after the death of their daughter. <\/p>\n

\u2018I had never heard of it, or been told about it,\u2019 says Amanda.<\/p>\n

Amber died aged 22, alone in her bed, in 2023. <\/p>\n

Amber was \u2018extremely entertaining,\u2019 says Martin. \u2018She was high-spirited, clever, totally had a mind of her own. She loved to sing and act.\u2019<\/p>\n

She had her first seizure<\/a> aged nine but wasn\u2019t diagnosed with epilepsy<\/a> until just before her 13th birthday. Neither she nor her parents were ever told about Sudden Unexpected\u00a0Death in Epilepsy (SUDEP).<\/p>\n

\u2018Very few people have even heard of it,\u2019 Amanda says. \u2018Information 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.\u2019<\/p>\n

\n
\n\t\t\"Feature\t<\/div>
Amber was high-spirited and clever with a mind of her own (Picture: Martin and Amanda Walker)<\/figcaption><\/figure>\n

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. <\/p>\n

Research into SUDEP<\/a> 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.\u00a0<\/p>\n

After Amber\u2019s death, Amanda met with Amber\u2019s consultant to ask why he had omitted such crucial information. \u2018He just couldn\u2019t give me an answer,\u2019 she says. <\/p>\n

The consultant implied that the conversation around SUDEP was \u2018difficult\u2019. \u2018But so is telling someone they\u2019ve got cancer<\/a>,\u2019 says Amanda. \u2018You don\u2019t just avoid it.\u2019<\/p>\n

\n
\n\t\t\"Feature\t<\/div>
She wasn\u2019t diagnosed with epilepsy until just before her 13th birthday (Picture: Martin and Amanda Walker)<\/figcaption><\/figure>\n

Why have doctors avoided mentioning SUDEP?<\/h2>\n

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 \u2013 he was 27. <\/p>\n

She says that for a range of reasons neurologists have struggled to communicate SUDEP.<\/p>\n

Fear and misunderstanding around epilepsy<\/a> 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.<\/p>\n

\n

\n\t\t\t\tSUDEP Action\t\t\t<\/h2>\n
\n

SUDEP Action provide key services for those who have been affected by epilepsy and SUDEP. <\/p>\n

They offer free bereavement support to those who have lost a loved one to SUDEP, counselling and assist grieving families during the inquest process.<\/p>\n

SUDEP Action is passionate about providing information about SUDEP to help reduce risk to those living with epilepsy, as well as driving research to prevent future deaths. <\/p>\n

You can donate to SUDEP Action here<\/a><\/p>\n<\/p><\/div>\n<\/p><\/div>\n

As late as the early nineties, \u2018the overriding message to people with epilepsy and their families was that this was a bread and butter neurological condition, not anything to worry about,\u2019 says Hanna.\u00a0<\/p>\n

Many SUDEP deaths are avoidable <\/h2>\n

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%.\u00a0\u00a0<\/p>\n

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\n\t\t\"Feature\t<\/div>
Jane Hanna OBE (Picture: Jane Hanna)<\/figcaption><\/figure>\n
\n
\n\t\t\"Feature\t<\/div>
Jennifer Preston (right) one of the co-founders of SUDEP Action in the 1990s after her son William died (Picture: Jane Hanna)<\/figcaption><\/figure>\n

People with epilepsy were, \u2018dying of complacency\u2019 says Hanna, \u2018and being treated differently from other people with risky, long-term conditions \u2013 from conditions that were less<\/em> risk than epilepsy\u2019. <\/p>\n

A national report found that SUDEP was only communicated in 1% of medical records examined.\u00a0<\/p>\n

A definition of SUDEP was finally included in the UK national clinical guidelines in <\/strong>2004, as well as directives for SUDEP and epilepsy care and properly recording epilepsy deaths.<\/p>\n

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 \u2018it doesn\u2019t have to be [bad news],\u2019 says Martin, \u2018because many SUDEP deaths are preventable.\u2019\u00a0<\/p>\n

\n
\n\t\t\"Feature\t<\/div>
Jane Hanna OBE (centre front, in a black and white dress) with SUDEP experts (Picture: Mervyn Clingan)<\/figcaption><\/figure>\n

\u2018There is this problem before death that people living with the condition and families aren\u2019t empowered,\u2019 says Hanna, \u2018and then there is this problem after death that families are very shocked by the sudden realisation about what they were dealing with.\u2019\u00a0<\/p>\n

Sandie and Becky\u2019s story <\/h2>\n

Sandie Scriven\u2019s daughter, Becky, died of SUDEP aged 11<\/a> in 2004. A paediatrician agreed to an EEG and then an MRI to \u2018prove wrong\u2019 Sandie\u2019s strong belief that Becky was suffering from epileptic seizures. The results of the MRI were due on May 6 \u2013 Becky died two days before.<\/p>\n

\u2018It was the police who called us to say that Becky had died from SUDEP,\u2019 says Sandie. \u2018We felt totally let down by Becky\u2019s GP, the registrar and the paediatrician \u2013 none of whom appeared to take us seriously or have any knowledge of epilepsy.\u2019<\/p>\n

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\n\t\t\"Sandie\t<\/div>
Becky Scrivens died from SUDEP aged 11 (Picture: Sandie Scrivens)<\/figcaption><\/figure>\n
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\n\t\t\"Sandie\t<\/div>
The Scrivens family (Picture: Sandie Scrivens)<\/figcaption><\/figure>\n

Sandie continues to campaign for SUDEP awareness and is also adamant that information about it should be shared early on, enabling families to make \u2018educated choices\u2019.\u00a0<\/p>\n

\u2018I have no doubt our lives would be vastly different if anyone had mentioned SUDEP risk while Becky was alive,\u2019 she says.<\/p>\n

Martin and Amanda\u2019s plea<\/h2>\n

Knowledge of SUDEP may have also saved Amber. \u2018Parents are already alarmed,\u2019 says Amanda. \u2018They need to know everything they can to protect their kids.<\/p>\n

\u2018As a teenager, we were so careful with Amber \u2013 always chasing her, making sure she took her medication. We didn\u2019t let her ride a bike or go swimming without someone watching. After she died, \u2018Our first thought was: \u201cwhy didn\u2019t we know about this?\u201d<\/em>\u2018<\/p>\n

Research indicates seizure control and reduction as the biggest mitigating factor for SUDEP risk. For this, medication is crucial \u2013 it\u2019s largely agreed that up to 70% of epilepsies can be controlled by medication<\/a>.\u00a0<\/p>\n

This goes beyond simple drug regime compliance, however, especially when it comes to SUDEP.\u00a0The key, says Hanna, is \u2018getting the right medication at the right time. Knowing which meds are the most effective for which seizure types becomes really, really important.\u2019<\/p>\n

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\n\t\t\t\tFor Sarah\t\t\t<\/h2>\n
\n
\n
\n\t\t\"\"\t<\/div>
Sarah Whiteley was a Metro columnist and much-loved member of the team (Picture: Sarah Whiteley)<\/figcaption><\/figure>\n<\/p>\n

Last year, on March 10, we lost our beloved colleague Sarah Whiteley. Sarah was a fantastic journalist; she was Metro<\/strong>\u2019s parenting columnist and a valued member of our first-person and opinion desk.<\/p>\n

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.<\/p>\n

With support from Sarah\u2019s family, Metro<\/strong> is fundraising for two very important charities: SUDEP Action<\/a> and Epilepsy Action<\/a>.<\/p>\n

Sarah was so incredible at helping other people\u00a0share their experiences; she was a born storyteller and we hope to do her proud with this series, while raising money in her memory.<\/p>\n<\/p><\/div>\n<\/p><\/div>\n

The Walkers claim that Amber was undermedicated at the time of her death. \u2018Her toxicology report showed that one of her drugs was at therapeutic levels but a second drug was under. She should have been on more.\u2019\u00a0<\/p>\n

A dose increase had been mentioned by one of Amber\u2019s doctors but only after they had reassured Amber that she was \u2018doing fine\u2019.\u00a0<\/p>\n

Knowledge is power<\/h2>\n

\u2018They never told Amber, \u201cthis is something you need to do\u201d. <\/em>If we\u2019d known about SUDEP, we as her parents would have increased her medication, whether Amber wanted to or not,\u2019 says Amanda.<\/p>\n

\u2018In hindsight, there were red flags that Amber had a heightened risk of SUDEP,\u2019 says Martin. \u2018In <\/em>the eight months before her death, she had six seizures, with four of them coming in a cluster, within an hour of each other \u2013 that was unusual for her.\u2019 At 22, she was in the highest-risk age-group for SUDEP, which Hanna cites as 20-40.<\/p>\n

For Sandie and her family, misinformation around epilepsy medication, combined with a lack of clinical knowledge, led to devastating consequences. <\/p>\n

Becky was seen by a doctor who said that \u2018seizure 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,\u2019 says Sandie. \u2018We have subsequently found this information to be totally unfounded and extremely dangerous.\u2019<\/p>\n

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\n\t\t\"Sandie\t<\/div>
The Scrivens family are among other campaigners who continue to raise money and awareness for SUDEP Action (Picture: Sandie Scrivens)<\/figcaption><\/figure>\n

What help is available today?<\/h2>\n

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\u2019s software during the pandemic.\u00a0<\/p>\n

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 \u2018this is what everyone is doing\u2019.\u00a0<\/p>\n

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.<\/p>\n

\n
Comment now<\/title><span class=\"metro-comment-cta__text\">Should SUDEP risks be communicated earlier in an epilepsy diagnosis?<\/span><\/span><a class=\"metro-comment-cta__button\" href=\"#metro-comments-container\">Comment Now<\/a><\/div>\n<\/section>\n<p>The investigation into Amber\u2019s death has been reopened, something Martin and Amanda say they have had to fight for as SUDEP was considered a natural cause of death by the coroner. Their aim is to prove that their daughter\u2019s death could have been prevented.<\/p>\n<p>\u2018Amber was having the time of her life when she died,\u2019 says Martin. \u2018We were away in Australia when it happened, which was the first time we\u2019d ever left her. It was traumatic, and her death is still so raw.\u2019\u00a0<\/p>\n<p>\u2018We need to get SUDEP talked about, get it understood,\u2019 says Amanda, \u2018to prevent other families living with the \u201cwhat ifs\u201d\u2019.<\/p>\n<p class=\"has-text-align-center\"><strong>Do you have a story you\u2019d like to share? Get in touch by emailing <a href=\"mailto:jess.austin@metro.co.uk\">jess.austin@metro.co.uk<\/a>.\u00a0<\/strong><\/p>\n<p class=\"has-text-align-center\"><strong>Share your views in the comments below.<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Amber died aged 22 (Picture: Martin and Amanda Walker) The first time Martin and Amanda Walker came across the term \u2018SUDEP\u2019 was after the death […]<\/p>\n","protected":false},"author":1,"featured_media":953,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[11],"tags":[],"_links":{"self":[{"href":"http:\/\/www.troop956.com\/index.php\/wp-json\/wp\/v2\/posts\/951"}],"collection":[{"href":"http:\/\/www.troop956.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/www.troop956.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/www.troop956.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/www.troop956.com\/index.php\/wp-json\/wp\/v2\/comments?post=951"}],"version-history":[{"count":3,"href":"http:\/\/www.troop956.com\/index.php\/wp-json\/wp\/v2\/posts\/951\/revisions"}],"predecessor-version":[{"id":963,"href":"http:\/\/www.troop956.com\/index.php\/wp-json\/wp\/v2\/posts\/951\/revisions\/963"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.troop956.com\/index.php\/wp-json\/wp\/v2\/media\/953"}],"wp:attachment":[{"href":"http:\/\/www.troop956.com\/index.php\/wp-json\/wp\/v2\/media?parent=951"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.troop956.com\/index.php\/wp-json\/wp\/v2\/categories?post=951"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.troop956.com\/index.php\/wp-json\/wp\/v2\/tags?post=951"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}