Roald Dahl's Marvellous Childrens Charity

Sharing the burden of a diagnosis of epilepsy

Esther, Mum to Beth who suffers from epilepsy talks about the role their Roald Dahl Nurse Karen has played in supporting the family, from Beth's diagnosis to helping mange her condition.

Beth and Roald Dahl Nurse Karen

In 2016, when Beth was eight, she was diagnosed with epilepsy. The diagnosis came after Beth experienced episodes of becoming unresponsive up to 100 times a day. After Beth's symptoms were investigated, it was confirmed she was experiencing absence seizures, meaning she appears to be vacant or daydreaming during a period of abnormal brain activity. Beth is also affected by other medical issues including having half a kidney removed when she was four. As a result of this, she had struggled to put on weight, which meant she had a tough time from a young age.

Shortly after Beth's diagnosis, Roald Dahl Nurse Karen who works as one of two Roald Dahl Nurses at Lancashire Teaching Hospitals NHS Foundation Trust started to support the family. This was hugely beneficial as Beth experienced behavioural issues as a result of her epilepsy medication. Beth's Mum Esther says, "Karen was my advocate, I would not have had the confidence to deal with the situation without Karen at my side." Roald Dahl Nurse Karen is a constant source of comfort and advice for Esther, providing information when Beth experiences seizures and taking the time to listen to Esther when she needs to talk.

Roald Dahl Nurse Karen also undertakes work in the community to support Beth's epilepsy and inform others of the condition. She visits Beth's school and has conducted a workshop for staff and children to inform them about this serious condition. Esther says, "She is so willing to help. She makes a massive difference for us with practical advice as well as emotional support."

Roald Dahl Nurse Karen attends the family's appointments with the consultant, so that she can help them to understand what has been said and answer any questions they may have. She has also spent time with Beth's siblings who have found it difficult to adjust to Beth's healthcare needs. Esther says Karen is always thinking of ways to support the family. "Both Roald Dahl Nurses, Karen and Jennie are so dedicated. It's not a job for them but a calling. They genuinely care about their patients and families."

Families such as Beth and Esther will have to manage their epilepsy diagnosis for the foreseeable future, but now they have the support of a Roald Dahl Nurse, they can do so with the knowledge that they will receive expert care from their Roald Dahl Nurse when they need it most, sharing the burden of their diagnosis.

Donate to help fund more Roald Dahl Nurses like Karen and Jennie.