Katie is 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. She develops and reviews 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. Her other duties include:
- To assist the team in delivery in their generic roles of liaison, education and networking with local services in particular children’s community nurses.
- To support patients on long-term steroids and those who require frequent medication review through the development of nurse-led clinics
- To contribute to high standards of care required to maintain Centre of Excellence status,l including timely data entry to UK national audits
- To provide specialist knowledge and training to nurses in neuromuscular disorders via forums such as neuromuscular courses, meetings and annual study days.