Save Our Specialist Epilepsy LD Service

Parent/Carers seeking continuity of Specialist Epilepsy/LD Healthcare Service for their adult sons & daughters from Hywel Dda UHB

[Save Our Specialist Epilepsy LD Service @SOSHDdUHB]

Restrictions on sodium valproate for boys and men were introduced as a precaution. But what happens when access to effective treatment is delayed or denied?
Read the latest analysis from Jane Hanna OBE & Prof Heather Angus-Leppan.
#Epilepsy #Valproate #SUDEP #PatientChoice

[SUDEP Action @SudepAction]

Is valproate guilty until proven innocent?

Our SUDEP Action experts, Jane Hanna OBE and Professor Heather Angus-Leppan, are clearing up the confusion around sodium valproate restrictions for boys and men.

Read more: https://t.co/XQvKSp2cSG

#SUDEP #Epilepsy #Valproate

[SUDEP Action @SudepAction]

“He graduated, worked hard, became independent, and was always respectful, polite and cheerful. I will always say that he was the best of us.”

Read Julio’s story: https://t.co/nD74JwpLQA

If you’d like to share your story, email [email protected]

#SUDEP #EpilepsyAwareness

[SUDEP Action @SudepAction]

Routine conversations about seizure safety and SUDEP are an essential part of epilepsy care. 💜

The SUDEP & Seizure Safety Checklist empowers healthcare professionals and patients to have structured, person-centred discussions around epilepsy risks: https://t.co/M5FXosEZqp

[SUDEP Action @SudepAction]

"It’s an occasion to bring people together who knew Maisie, to remember her, share stories, reflect on and celebrate Maisie's short life.” (James Tothill, Maisie’s dad)

Read more about the Maisie Tothill ball: https://t.co/C92Z0fkay5

#SUDEP #Epilepsy #EpilepsyAwareness

[Elaine #justiceforClive🌹A Conscience Manual @ElaineC09261846]

Lack of learning-disability nurses in UK is an ‘absolute crisis’, says union https://t.co/hYW9DGmpp5

[SUDEP Action @SudepAction]

His family will be telling Jacob’s story, including all the concerns that they took to the inquest. His parents said Jacob loved his life, he was an outgoing, intelligent, kind and beautiful young man with a huge circle of friends. His family adored him beyond measure.

[SUDEP Action @SudepAction]

“He was fun to be around, in his usual unassuming way – I miss that terribly.”

Tomorrow would have been the 39th wedding anniversary of David and Gerri Howarth.

Read David’s story: https://t.co/xL5dEKJBGH

#SUDEP #Epilepsy #EpilepsyAwareness

[SUDEP Action @SudepAction]

Jacob Sunley was just 20 when he died. He was started on sodium valproate for epilepsy and was seizure-free for nearly three years. He changed from sodium valproate during the time that new restrictions for prescribing it to men and boys began.

[SUDEP Action @SudepAction]

We are thinking of the family of Jacob Sunley today. Jacob died of SUDEP in 2025. We will be alongside his family at the inquest today in Reading to provide support and expertise.

#SUDEP #EpilepsyAwareness

[SUDEP Action @SudepAction]

New research from the Epilepsy Deaths Register sheds light on how we can improve safety, communication and care coordination for pregnant women with epilepsy.

Swipe to see what the data tells us ➡️

Your voices are driving clinical change: https://t.co/OtfnBDfIh7

#Epilepsy

[SUDEP Action @SudepAction]

Every conversation about #epilepsy matters — especially for children and young people.

Our Children’s SUDEP & Seizure Safety Checklist is a free tool that supports personalised, meaningful discussions on risk between families and healthcare professionals:
https://t.co/mmeQ68BX2W

[SUDEP Action @SudepAction]

Well done to Jennifer Hamilton who ran the Belfast City Marathon in memory of her friend Angela’s son, Jordan Shaw. Jordan died from SUDEP in April 2025, just 30 years old.

Jennifer raised an incredible £2,068.75! 🧡

#SUDEP #Epilepsy #Grief #Belfast #Fundraising

[SUDEP Action @SudepAction]

When a life is lost to #epilepsy, the 'why' matters. Sharing their story with the Epilepsy Deaths Register provides the vital data researchers need to understand risks, improve care, and prevent future tragedies.

Turn loss into a legacy of safety. 💜

👉 https://t.co/OtfnBDfIh7

[Elaine #justiceforClive🌹A Conscience Manual @ElaineC09261846]

My brother #CliveTreacey was a human being not a policy milestone. He died because of systemic institutional neglect, marking Anversarys without acknowledging the #TransformingCareDeaths is not only hurtful it's insulting to every life lost.
#TransformingCareDeaths
#CliveTreacey

[SUDEP Action @SudepAction]

Interested in making a real, lasting difference? 🧡

By regular giving, you can help spread awareness of #epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP). Help to support those in need and bring hope to where it’s needed: https://t.co/iaImfaYtFC

[SUDEP Action @SudepAction]

Help us support the research that saves lives.

The Epilepsy Deaths Register (EDR) collects valuable information to help researchers better understand #epilepsy risks and prevent future losses.

Learn more: https://t.co/OtfnBDfIh7

Share this post to increase awareness. ✅

[SUDEP Action @SudepAction]

In the epilepsy community, we know the importance of constructive conversations between the patient and health professional. Discussing risks can significantly support living well with #epilepsy

Download the SUDEP and Seizure Safety Checklist: https://t.co/C16yG98IIU

[SUDEP Action @SudepAction]

Awareness tells you SUDEP exists; action helps you reduce the risk. ✅

As a health professional, our SUDEP and Seizure Safety Checklist is a free tool for you and your patient to identify and manage risks together: https://t.co/eovo1hfYle

#NationalEpilepsyWeek

[SUDEP Action @SudepAction]

Don’t miss your chance to join us for an empowering live webinar dedicated to helping you live well and safely with epilepsy 💜

Whether you're looking for clarity on everyday safety or want more confidence in your independence, our panel is here to help: https://t.co/OAzSZsbK2n

[SUDEP Action @SudepAction]

Kicking off #NationalEpilepsyWeek with a reminder of the strength of the epilepsy community.
So many voices. So many experiences.
So many organisations standing side by side so no one faces epilepsy alone.
We are proud to stand alongside others supporting people with epilepsy.