General
Family believe Charlie should still be alive today
The inquest into the death of Charlie Marriage will take place from June 24-28 at Inner London South Coroners Court, Southwark.
SUDEP Action
News
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GeneralPressure on party leaders to fix medicine shortages
SUDEP Action is continuing to work with Epilepsy Society, Epilepsy Action and Parkinson’s UK to improve access to life-saving medicines.
General‘Bella would be so proud’
SUDEP Action supporter Colin Eveleigh will have a work displayed at The Royal Academy’s Summer Exhibition in July and August.
GeneralNew study: More risk discussions needed with patients
Research compares views of epilepsy professionals in the UK and Norway: Despite international guidance, SUDEP-related discussions are still not consistently taking place.
GeneralWe all need to ‘be more Hannah’
A family is urging each other to ‘be more Hannah’ in memory of Hannah Smith, who died last year from SUDEP.
GeneralOur Help for Hope pledge – ask your MP!
If elected, I will meet with SUDEP Action to talk about rising preventable deaths and harms to people with epilepsy.
GeneralPurple hearts for SMPs & Glasgow Uni to be lit purple!
Jessica Johnston died suddenly and unexpectedly from epilepsy in January 2022, just 20 years old.
GeneralAnne’s Great South Run triumph
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.
GeneralNew project to reduce epilepsy risk in Ireland
SUDEP Action has begun work with Epilepsy Ireland to introduce the SUDEP and Seizure Safety Checklist to Ireland.
GeneralSudden Child Deaths: The Search for Answers
SUDEP Action was disappointed with aspects of the BBC Panorama programme Sudden Child Deaths: The Search for Answers.
GeneralPeople with epilepsy deserve better access to medicines
SUDEP Action is calling for more to be done to ensure people with epilepsy have better access to lifesaving medicines.
GeneralNHS England-funded project is lasting legacy to Clive
Guidance designed to reduce the epilepsy risks faced by people with learning disabilities has been launched by NHS England and SUDEP Action.
GeneralA mother’s perspective, by journalist Caroline Scott
My 21-year-old son Rupert had constant tonic clonic face-smashing seizures for over three years before a combination of drugs – different team at another hospital – helped get them under control last year.
General‘My Safety Matters’ is an important theme for now
My Safety Matters’ is central to SUDEP prevention. Safety matters because we care for life.
GeneralFrom our CEO – Sammy Ashby
As the ninth SUDEP Action Day approaches, my first as CEO, I’m both excited and anxious to see how organisations worldwide get involved.
GeneralFamily answers SOS to keep Brett’s journey going
The family of Brett Saunders are helping him complete his John O’Groats to Land’s End challenge, after injury disrupted his plans to run the 805-mile route solo.
NewsJane Hanna, in conversation with Angela Walker
Former BBC journalist Angela Walker spoke in depth to Jane Hanna recently as part of her new podcast with inspirational people.
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Team
Our new CEO – Sammy Ashby
Sammy Ashby is the new CEO of SUDEP Action following Jane Hanna’s decision to step down from the role.
TeamJane Hanna stepping down as CEO
Jane Hanna is stepping down as CEO of SUDEP Action from July 31.
GeneralBrett to run from John O’Groats to Land’s End
Sussex man Brett Saunders is running the length of Britain from John O’Groats to Land’s End, despite considering himself an ‘inexperienced runner’.
UpdatesCoalition statement on the use of Sodium Valproate
A coalition of 11 UK epilepsy organisations recently met with representatives of the Medicines & Healthcare products Regulatory Agency (MHRA).
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Updates
Epilepsy Coalition – Important Valproate Update
People affected by epilepsy are advised not to stop or alter prescribed medications. Charity helplines are available for information and support.
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General
Project shortlisted for 2023 HSJ Patient Safety Awards
SUDEP Action is thrilled to be part of a project shortlisted for the Learning Disabilities Initiatives of the Year award at this year’s HSJ Patient Safety Awards.
GeneralWomen left in dark over pregnancy and SUDEP risks
New research published in the Seizure Journal shows women are vulnerable to dying prematurely
GeneralNew project launched to create epilepsy risk Checklist for children
SUDEP Action and Cornwall Partnership NHS Foundation Trust are collaborating with Young Epilepsy to create a paediatric version of the SUDEP and Seizure Safety Checklist. The award-winning Checklist, which launched in 2015, supports health professionals in discussing epilepsy mortality risks and SUDEP with their patients (aged 16+). It is currently used by over 1,500 health professionals across the UK, and has been recognised by NHS Rightcare, the Learning Disabilities Mortality Review (LeDeR) and Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries (MBRRACE) as having the potential to prevent deaths and help people with epilepsy to live more safely.
ResearchStudy suggests SUDEP rates in children higher than previously thought
A new review published in the Developmental Medicine and Child Neurology journal
GeneralUntold Distress – the impact of Covid19 on the epilepsy bereaved
New research led by SUDEP Action has found that bereaved people experienced an increased intensity of grief symptoms during the pandemic, when lockdown measures were in place.
For one-to-one support after an epilepsy death contact our support team today
We provide the only support line for people bereaved by an epilepsy death and offer access to qualified counsellors who have a special interest and understanding in sudden and traumatic death.
