Roald Dahl Specialist Nurses

There are 40 Roald Dahl Epilepsy Specialist Nurses based in NHS Trusts and Health Boards around the UK. Epilepsy specialist nurses play a key role in supporting continuity of care between settings for children and young people with epilepsy. There is evidence that they improve clinically important outcomes such as knowledge, anxiety and depression in secondary and tertiary settings. An epilepsy specialist nurse has additional qualifications in neurology and care of patients with epilepsy.

Roald Dahl Haematology Specialist Nurses focus on Sickle Cell Anaemia and Thalassemia, although some deal with other blood conditions. As well as taking the key role of co-ordination of care for the child and their family, the haematology specialist nurse will be an expert in the conditions they support, and they will administer treatments such as regular blood transfusions to their patients. As leaders in their fields, these nurses will work closely with consultants and other specialists.

Transitional care is where a child will move from children's (paediatric) to adult services. These are two quite different services and it can lead to a time of anxiety and worry for young people. Transition starts in early teens and can continue to be supported until the patient is 25. Although transitioning young people into adult care will be part of all Roald Dahl Nurses roles, a transition specialist nurse will work solely on this area creating pathways for the young person to follow as they move through the system and supporting them both from a medical and emotional standpoint.

Neuromuscular conditions impair the functioning of the muscles, as part of the voluntary muscle or nervous system. Neuromuscular specialist nurses will work across a range of conditions, where they are expert in managing medications for their children providing a responsive and tailored service that reduces hospital admissions. Children, young people and their families need a lot of support throughout their life from diagnosis, through transition and beyond. Our neuromuscular specialist nurses are there to ensure they can lead a more marvellous life through the care, emotional support and care coordination they give.

We have strong links with some of the UK's leading rare disease centre's - at Birmingham Women's and Children's Hospital and at Great Ormond Street Hospital. Our rare disease specialist nurses, and syndromes without a name nurse work with children and young people who have rare or undiagnosed conditions. Whilst their work is similar to that of the other Roald Dahl Nurses, they specialise in the genetic side of diseases and have to support the families emotionally when they don't have a diagnoses or if their condition is incredibly complicated.

Roald Dahl Nurses work across a range of other specialisms where children are living with life long, under funded and under resourced conditions. These include brain injury patients, brain surgery, non-malignant bone marrow transplants and gastroenterology.

All of our nurses are part of a network, where they are able to build peer support, develop their skills and improve their qualities as a leader or a manager. Roald Dahl Nurses are an incredible source of information and knowledge and this spreads around our network and beyond.