Our CEO; Sammy Ashby on SUDEP Action Day
We could not have predicted how this day would grow into the global event it is today, supported and embraced by epilepsy organisations all over the world.
It’s 10 years since we launched the first SUDEP Action Day in 2014.
Our aim back then was to increase awareness about the risks of SUDEP – when someone with epilepsy dies and no other cause of death can be found. We could not have predicted how this day would grow into the global event it is today, supported and embraced by epilepsy organisations all over the world.
And yet, too many preventable epilepsy deaths are still happening.
And too many families are still coming to us after losing a loved one, saying they did not know it was possible to die from epilepsy.
We chose this year’s theme, Our Risks, Our Rights, because we believe people with epilepsy have a right to information, along with rights to medical reviews, life-saving medicines, access to services and a say in their own care plans. People with epilepsy long to be treated the same as others with long-term, unpredictable and potentially dangerous health conditions.
The bereaved have rights too, to have their questions answered honestly and accurately and the true cause of their loved one’s death properly recognised, including by health professionals and on death certificates.
This SUDEP Action Day we’ll be sharing lots of info and personal stories and we know this content will be challenging for some. However, we feel it’s necessary to share these stories because we want to prevent more deaths in the future.
I recommend you read Martin and Amanda Walker’s ‘My Story’ here.
They lost their daughter Amber last year to SUDEP, aged 22. Disturbingly, even though Amber lived with epilepsy from the age of nine, not one consultant, doctor, GP or specialist nurse warned them about SUDEP. After Amber died, one consultant told the family they generally didn’t raise the subject of SUDEP as it made for a ‘difficult conversation’.
Such an admission is truly shocking, yet sadly it is something we hear time and time again from the bereaved families. It’s also why we won’t stop fighting for change, including a change of culture in the way health professionals discuss epilepsy risks.
People should be told about epilepsy risks as soon as possible after diagnosis. If they are stuck on diagnosis pathway/waiting lists, they should have access to some basis risk information to help keep themselves safe in the meantime. This knowledge really could save lives.
We understand that telling a newly diagnosed epilepsy patient that there is a risk of death linked to their condition is daunting. How will they react to the news? What if I say the wrong thing? We can’t prevent SUDEP so why put unnecessary worry on them, given it probably won’t happen?
All this pales into insignificance when you’re sat in a room having to explain to unknowing parents why their child has died and why they must now face a devastating future without their loved one.
The medical profession does not shy away from difficult conversations if someone has other health conditions such as cancer, asthma or diabetes. So why is epilepsy different? It really shouldn’t be. Knowledge is power and ignorance is far from bliss when it comes to epilepsy risks. The more someone knows about their risks, the more informed their lifestyle choices can be.
There are lots of fantastic health professionals and support organisations out there, so I urge people to use them and push for answers, information and access to the things they need to live well with epilepsy.
Difficult conversations must happen, and it has nothing to do with making people fearful. It’s all about keeping people safe. This is a basic right and the least that anyone with epilepsy should expect to receive from those supporting or overseeing their care plans.
Best wishes,
Sammy Ashby
