Meet Trystan, a 38-year-old from Cross Hands, Carmarthenshire, living with tuberous sclerosis complex (TSC), a rare condition that causes non-cancerous tumours to grow in vital organs. It’s been a life of challenges for Trystan and his family, who’ve navigated daily seizures and complex health needs since he was just a baby. His mum, Marie, has been his full-time carer, dedicating over 30 years to his wellbeing.
For nearly two decades, Trystan received exceptional support from the Learning Disabilities Epilepsy Service, providing the family with peace of mind and expert guidance. However, this all changed abruptly in 2021 when the service was withdrawn without consultation. The sudden removal has left the James family, along with over 150 others, grappling with fear and uncertainty about their loved ones’ care.
Despite these setbacks, Trystan’s life remains rich in joy and love. With a makeshift arcade in the garden and a boat adapted for wheelchair use, his home is a sanctuary tailored to his happiness. Yet, the unpredictability of his condition is a constant shadow, particularly given the risk of Sudden Unexpected Death in Epilepsy (SUDEP), which terrifies families with loved ones like Trystan.
The health board’s withdrawal of crucial services has sparked significant concern. A report commissioned by the board itself labelled the previous service as “gold standard” and expressed alarm over its removal. Despite promises of improvement, families find themselves facing increased hospital admissions and a lack of specialised care, prompting some, including Marie, to bring their concerns to the Public Services Ombudsman.
Marie is now a policy champion for Sudep Action, using her voice to call for immediate change. She and other carers demand a return to robust, specialised support that adequately addresses the unique challenges of living with learning disabilities and epilepsy.
“Epileptic seizures are unpredictable,” Marie recently stated. “We need the right support to keep our loved ones safe. We know what good care looks like, and we won’t stop until it’s restored for everyone who needs it.”