Family's tribute to specialist nurse following girl's epilepsy diagnosis
A specialist nurse has been praised by the family of a teenager girl with epilepsy for the support she has provided throughout her treatment.
Thirteen-year-old Matilda was diagnosed with epilepsy in 2022 – a huge shock to her family where there was no history of the condition.
Shortly after her diagnosis, the family met Sophie Gilmour-Ivens, senior paediatric specialist nurse at Northumbria Healthcare NHS Foundation Trust’s North Tyneside General Hospital, who, they say, became a constant source of support.
Matilda’s mum, Sally, said: “We didn’t know what this diagnosis would mean for Matilda or how we would adapt as a family but Sophie has been there for us through every stage.
"Not only has she helped Matilda live her life with confidence, she has helped our whole family cope with the challenges that come with an epilepsy diagnosis.”
She added: “Sophie didn’t just support us medically. She gave us reassurance, confidence and hope.”
On one occasion, Matilda got the opportunity to go on a school trip to France, but the family were hesitant because of her epilepsy until Sophie stepped in.
She organised epilepsy training for the teachers and staff on the trip, helping them understand both the condition and what action to take in an emergency.
Sally added: “That gave us so much reassurance.
“From our very first meeting, Sophie put us at ease and I felt like I could ask her anything, at any time.
"Knowing she was there was a huge help.”
She added: “Sophie always spoke directly to Matilda and included her in conversations about her care.”
Sophie also organised epilepsy awareness and seizure response training for Matilda’s friends as she became older and more independent easing her family’s fears about what would happen if she had a seizure while she was out with them.
Matilda said: “It made me feel much more relaxed and could go out and do the things with my friends.
“Knowing they understood what to do made a huge difference."
Sophie said: “When a young person is diagnosed with epilepsy, we’re not just supporting them medically, we’re supporting their whole family as they adjust to a new reality.
"Matilda and her family have shown incredible strength throughout that journey and it’s been a privilege to be part of it.
“Through our Lifelong Care strategy, we’re committed to providing personalised care that supports people at every stage of their life.
"For me, that means taking the time to understand what’s important to each family and helping young people like Matilda build the confidence and independence to live their lives to the fullest.”