Meet Roald Dahl Nurse Emma

Roald Dahl Epilepsy Nurse Specialists Emma and Jess welcomed the charity and over 20 families to a summer picnic on Saturday, a chance for them to meet each other, make new friends, and to share their stories. We caught up with her after the event to find out more about her work and why it matters so much to young people in this area...

"An epilepsy diagnosis delivers a different life to the one a parent expects for their child and — as well as helping them understand and navigate the care and treatments — one of my jobs is to support those parents and help their children and teenagers move forward so they can be themselves, be who they want to be in the future," says Emma.   "As a Roald Dahl Nurse I can get to know the patients, at home and then as we build a care plan for nursery and then school — visiting both to do some training,” explains Emma. “There are 200 children and young people on my case load and they do, of course, have their appointments at the hospital — both a consultant and clinic once a year — but I am in touch with them in between, helping them understand what the condition is, and what it's not, as well as reviewing their medication and care which saves dashes to the GP or A&E if they are worried. They can get in touch with me anytime, and I can take their questions to a consultant if I can’t answer them myself."

Emma has been in this role for three years and knows there is still a lack of awareness and understanding that needs challenging. “Epilepsy can be portrayed so negatively in the media or on TV, which can scare patients and stigmatise the condition and leave children fearful of being laughed at or ostracised,” she says. “I create networking groups so they can build their understanding and confidence. "I get lots of feedback from parents, too, who feel more confident and relaxed in the care, and so their children feel more confident as a result,” says Emma.   

In this region, Emma not only works alongside families to support that, but runs social events for young people — picnics like the one this weekend and get togethers for nursery and primary school children and their parents and socials for teens —  this week at a skittle alley where a game is followed by a pizza.     "Everyone attending lives with epilepsy and can mingle and talk to each other, not necessarily about epilepsy but their life with it,” says Emma. That engagement builds support.  “I saw two patients this week, a 15-year-old and one at college, and the difference in them since diagnosis was so good to see. They were so grown up, answering questions confidently, and able to talk about how they were managing their seizures and questions they had about treatments. That shows me what's possible and fills me with hope. It makes this job really special."