Roald Dahl Rare Disease Specialist Nurse

Job overview

An exciting opportunity has arisen to join the Integrated Children's Community Nursing team at Alder Hey as a Roald Dahl Rare Disease Nurse (Band 7). This full-time role offers the chance to make a real difference to children, young people, and families living with rare diseases.

Working as part of a highly respected multidisciplinary team, the successful candidate will act as a Roald Dahl Ambassador within Alder Hey, championing excellence in patient care, innovation, collaboration, and family support.

This is a rewarding opportunity for an experienced and motivated nurse with excellent clinical, communication, and leadership skills who is passionate about improving the lives of patients with complex and rare conditions.

If you are enthusiastic, compassionate, and ready to help shape and develop rare disease services within a world-leading children’s hospital, we would love to hear from you.

Main duties of the job

The post holder will provide personalised community care and coordinated patient management for children and young people (CYP) with rare diseases, or syndromes without a name (SWAN) and support a gene discovery clinic to improve complex diagnoses and significantly improving patient outcomes.

Detailed job description and main responsibilities

The post holder will provide personalised community care and coordinated patient management for children and young people (CYP) with rare diseases, or syndromes without a name (SWAN) and support a gene discovery clinic to improve complex diagnoses and significantly improving patient outcomes.

• Provide clear and effective leadership and co-ordination of the patient pathway for CYP with rare diseases and medical complexity.
• Work with minimal supervision to develop and deliver a specialist service based on principles that are evidence based and which enhance the quality of patient care.
• Ensure delivery of a high-quality (best practice informed) service meeting the individual needs of the child and their family.
• Lead the co-ordination of holistic and seamless clinical care for CYP with rare diseases, who are often known to several specialty teams, using psychologically informed care methods.
• Co-ordinate multidisciplinary assessments meeting the physical, psychological, emotional and spiritual needs of the CYP and their family at times of stability and crisis and together with the multidisciplinary team develop strategies to address these needs.
• Supporting transition and developmental milestones. Assisting patients in navigating developmental and educational challenges and transitions, including transition to adult services.
• Identifying care packages to meet the specific needs of each patient.
• Promote efficient patient pathways.
• Work collaboratively with all stakeholders including MDTs, CNSs, clinical teams, Consultants, therapists, and community nursing teams across the Trust/Health Board to facilitate improved patient flow, capacity and continuity of care.