Roald Dahl Epilepsy Specialist Nurses
Roald Dahl's Marvellous Children's Charity has been working in partnership with the NHS to establish new Roald Dahl Epilepsy Specialist Nurse posts since 1992. At that time we created the UK's first epilepsy specialist nurse and now have a network of over 40, proving the positive impact that they have on children and young people with epilepsy again and again.
Epilepsy is the most common significant long-term neurological condition of childhood, and it affects an estimated 112,000 children and young people in the UK.1
Epilepsy can place immense strain on families who can feel lost in the healthcare system and struggling to cope. Roald Dahl Epilepsy Specialist Nurses not only organise and co-ordinate tests, treatment, and care in a way that they have the least negative impact on their young patients, but also provide advice and educate affected families, ultimately improving their quality of life.
Although epilepsy is not the exclusive focus of our charity, we have been committed to supporting seriously ill children and young people living with epilepsy for the last three decades.
22% of children and young people diagnosed with epilepsy do not have input from an Epilepsy Specialist Nurse. 2
We believe and have proven through academic research that it is critical that all children living with epilepsy have sufficient access to a full paediatric team to increase diagnostic accuracy, improve ongoing management and provide holistic support to the child and their family.
NICE Clinical guidelines 137 recommends a comprehensive multidisciplinary approach to achieving the best outcomes for children with epilepsy and considers that Epilepsy Specialist Nurses should be an integral part of the network of care of children with epilepsy.3
Specialist care from a Roald Dahl Children's Nurse can mean fewer trips to hospital and less pain, it can cut down on life threatening situations.
Help fund a Roald Dahl Children's Nurse
Too many seriously ill children across the UK do not have access to a specialist Nurse. We want to change this, because every seriously ill child deserves a Roald Dahl Children's Nurse.
Do Something Marvellous and help fund a new children's nurse. Give a vital lifeline to seriously ill children and their families.
How your donations help - real life stories
Isaac is supported by Roald Dahl Nurse Vicki
Vicki on being a Roald Dahl Nurse
The value of Roald Dahl Nurses to children
How Roald Dahl Nurses help Faye and Luca
1 Royal College of Paediatrics and Child Health (2020) State of Child Health in the UK. https://stateofchildhealth.rcpch.ac.uk/evidence/long-term-conditions/epilepsy/
2.Royal College of Paediatrics and Child Health (2021) Epilepsy12: National Clinical Audit of Seizures and Epilepsies for Children and Young People.
3. National Institute for Health and Care Excellence (2012) Epilepsies: diagnosis and management. [Updated February 2020] https://www.nice.org.uk/guidance/cg137