Roald Dahl Neuromuscular Nurse Specialist
The role will be a key contact for patients and families, providing support and advice that will help families to manage their child’s symptoms at home and to know when to access hospital support where appropriate.
To develop and review standardised care pathways and emergency protocols for children with neuromuscular disorders for the entire clinical network in liaison with the other team members and local services.
The role will support the team in delivery in their generic roles of liaison, education and networking with local services in particular children’s community nurses.
Through the development of nurse-led clinics to support patients on long-term steroids and those who require frequent medication review.
To contribute to high standards of care required to maintain centre of excellence status including timely data entry to UK national audits
Provide specialist knowledge and training to nurses in neuromuscular disorders via forums such as neuromuscular courses, meetings and annual study days.