A teenager from North Shields and her mother have praised a nurse for providing life-changing support after an epilepsy diagnosis. Matilda Burton, 13, was diagnosed with the condition in 2022, a shock to her family.
Shortly after, they were introduced to Sophie Gilmour-Ivens, a senior paediatric specialist nurse, who has helped them navigate the uncertainty that follows such a diagnosis. She has also supported the family in allowing Matilda to enjoy activities such as going out with friends or school trips without excessive worry about the impact of epilepsy.
Family's initial shock and nurse's reassurance
Matilda's mum Sally described the diagnosis as overwhelming. "It was a massive worry. We didn't know what this would mean for Matilda or how we would adapt as a family," she said.
Sophie soon stepped in. Sally added: "She put me at ease straight away. I felt like I could ask her anything, at any time. Knowing she was there was a huge help. Sophie always spoke directly to Matilda and included her in conversations about her care."
"As a parent, that's so important. A lot of healthcare professionals would naturally direct the conversation towards me, but Sophie made sure Matilda's voice was heard," Sally said.
Supporting independence and school trips
As Matilda has grown, balancing independence with epilepsy has become a serious issue. Sally said: "We worried about what would happen if she had a seizure while she was out with friends. It was difficult not to think about the worst-case scenarios."
When Matilda had the chance to go on a school trip to France, Sally added: "I was worried that if something happened, the teachers and people around Matilda wouldn't know how to help her."
Sophie stepped in on multiple occasions, organising epilepsy awareness and seizure response training for Matilda's friends and ensuring staff and teachers on the France trip were appropriately trained.
Matilda said: "It made me feel much more relaxed. I could go out and do the things my friends were doing without worrying so much. Knowing they understood what to do made a huge difference."
Ongoing impact and nurse's perspective
Sally, a nurse herself, added: "She has been there through every stage. Not only has she helped Matilda live her life with confidence, but she has helped our whole family cope with the challenges that come with an epilepsy diagnosis."
"Sophie didn't just support us medically. She gave us reassurance, confidence and hope. She helped us see what was possible, rather than focusing on what might go wrong," Sally said.
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," she added.
