Roald Dahl Rare Disease Specialist Nurse
Job Description
Job summary
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.
About us
Sponsorship - We are an approved sponsoring organisation. Applications will be considered from applicants requiring sponsorship alongside all other applications. Please be aware, not all roles are eligible for sponsorship.You can review the list of eligible role and requirements on the government website.
Job 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.
Person Specification
Qualifications
Essential
- oNMC Registered Nurse (RN)
- oFirst Degree in relevant subject or equivalent qualification / experience
- oEvidence of continued professional development and training.
Desirable
- Teaching / Mentorship Qualification or willingness to undertake
Experience
Essential
- oExperience of working with CYP with medical complexity
- oAt least 4 years of working post registration experience in children's nursing
- oExperience working within a multidisciplinary team
- oPatient co-ordination experience
- oA minimum of 2 years' experience at Band 6 level or above
- oExperience in service design, development, and implementation
Desirable
- oEvidence of working across several clinical disciplines
Knowledge
Essential
- oSpecialist knowledge of professional and national standards pertaining to children's community nursing and rare diseases
- oTrust and National Safeguarding Policies and Guidelines
- oSound knowledge & experience of safeguarding children & vulnerable adults
Skills
Essential
- oAbility to plan, prioritise and organise own workload
- oEnthusiastic and highly motivated
- oEvidence of continued professional development
- oAble to undertake pertinent clinical skills
- oClear understanding and commitment to clinical governance and quality assurance
personal attributes
Essential
- oAble to work autonomously
- oFlexible, adaptable and innovative, willing to commit to achieving results and meeting deadlines
- oTakes initiative - sees opportunities and acts on them immediately
- oExhibits and promotes trust values
Disclosure and Barring Service Check
This post is subject to the Rehabilitation of Offenders Act (Exceptions Order) 1975 and as such it will be necessary for a submission for Disclosure to be made to the Disclosure and Barring Service (formerly known as CRB) to check for any previous criminal convictions.
Certificate of Sponsorship
Applications from job seekers who require current Skilled worker sponsorship to work in the UK are welcome and will be considered alongside all other applications. For further information visit the UK Visas and Immigration website (Opens in a new tab).
From 6 April 2017, skilled worker applicants, applying for entry clearance into the UK, have had to present a criminal record certificate from each country they have resided continuously or cumulatively for 12 months or more in the past 10 years. Adult dependants (over 18 years old) are also subject to this requirement. Guidance can be found here Criminal records checks for overseas applicants (Opens in a new tab).
UK Registration
Applicants must have current UK professional registration. For further information please see NHS Careers website (opens in a new window).
Employer details
Employer name
Alder Hey Children's NHS Foundation Trust
Address
Beech House
Alder Hey Children's Hospital
West Derby
L12 2AP
United Kingdom
