His mother Henrietta says the systems in place – meant to protect her son – failed him. She believes there are still major problems with NHS111, which are putting the lives of others at risk.
Dan joins the team as cover for Sammy Ashby, who will go on maternity leave in February.
“It is often in the darkest skies that we see the brightest stars.” – Richard Evans
North Thames Paediatric Network sign up to the Paediatric SUDEP and Seizure Safety Checklist.
This year, SUDEP Action has been accepted to be part of The Big Give Christmas Challenge, a match-funding initiative where your contribution can make double the difference!
A blog by Jane Hanna OBE, SUDEP Action Director of Policy & Influencing
A village festival to commemorate Ben’s 30th birthday.
Ellie Goodwin gives a run down of managing epilepsy in the office
Hope renewed for use of anti-seizure medication for patients with Lennox-Gastaut Syndrome
SUDEP Action CEO Sammy Ashby on the Government’s new 10-year plan for change.
Ellie Goodwin gives us a quick tour of dating as someone with epilepsy.
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.
The My Way to 5K challenge takes place annually between 1st October – 20th alongside SUDEP Action Day on Wednesday 16th October 2024.
An inquest has ruled that Joshua Owen died of SUDEP, even though his epilepsy was never diagnosed.
We believe the lack of MHRA transparency and consultation on the Prevent Programme is outside the range of reasonable and acceptable.
SUDEP Action has contributed to a new research paper on the impacts of Covid-19 on people with epilepsy.
Exciting new research partnership announced with Epilepsy Research Institute (ERI).
SUDEP Action has put its name to a letter urging Wes Streeting to meet to discuss critical medicine supply issues.
The inquest into the death of Charlie Marriage will take place from June 24-28 at Inner London South Coroners Court, Southwark.
SUDEP Action is continuing to work with Epilepsy Society, Epilepsy Action and Parkinson’s UK to improve access to life-saving medicines.
SUDEP Action supporter Colin Eveleigh will have a work displayed at The Royal Academy’s Summer Exhibition in July and August.
Research compares views of epilepsy professionals in the UK and Norway: Despite international guidance, SUDEP-related discussions are still not consistently taking place.
A family is urging each other to ‘be more Hannah’ in memory of Hannah Smith, who died last year from SUDEP.
If elected, I will meet with SUDEP Action to talk about rising preventable deaths and harms to people with epilepsy.
Jessica Johnston died suddenly and unexpectedly from epilepsy in January 2022, just 20 years old.
For six years, Anne O’Neill has completed the Great South Run in memory of her sister Brigid who sadly suffered a fatal epileptic seizure in November 2001.
SUDEP Action has begun work with Epilepsy Ireland to introduce the SUDEP and Seizure Safety Checklist to Ireland.
SUDEP Action was disappointed with aspects of the BBC Panorama programme Sudden Child Deaths: The Search for Answers.
SUDEP Action is calling for more to be done to ensure people with epilepsy have better access to lifesaving medicines.
Guidance designed to reduce the epilepsy risks faced by people with learning disabilities has been launched by NHS England and SUDEP Action.
We provide the only support line for people bereaved by an epilepsy death and offer access to qualified counselling. Our dedicated support team has a special interest in, and understanding of, sudden and traumatic death.
