ERK Clinical Coordinator

Purpose of the role
The Rare Disease ERN ERKNET Care Coordinator will have a central role in the coordination of multidisciplinary rare disease care pathways, patient and family rare disease support, advocacy and education. In collaboration with the MDT and relevant stakeholders, the post holder will contribute to the delivery of a quality and effective rare disease service and identify service quality improvements through a patient partnership approach.

The Care Coordinator will collaborate and work closely with the National Care Coordinator at the National Rare Diseases Office on (but not limited to) national data reporting requirements and standards and continuous quality improvement.

Reporting Relationship
The Rare Disease ERN ERKNET Care Coordinator will report to the ERN ERKNET Clinical Lead/Co Lead on the rare disease programme of work and to the Directorate Nurse Manager or Directorate Business Manager of the supervising Directorate for operational supervision.

Patient Care Coordination
• Co-ordinate patients' care plans across cross-sectoral specialties and disciplines
• Establish and support the development of agreed rare disease referral pathways and processes across both acute and community-based settings
• Provide specialist support, information and liaison services to patients/families and carers
• Assist in the effective transition from paediatric services to adult services as required
• Participate in the development and implementation of rare disease care pathways in collaboration with patient organisations and multidisciplinary stakeholders, and the National Rare Diseases Office (as required)
• Actively participate in multidisciplinary team meetings
• Contribute to the development of clinical trials in rare kidney disease

ERN ERKNET Coordination and Support
• Support the Clinical Lead/Co Lead in the coordination of ERN ERKNET activities
• Assist the Clinical Lead/Co Lead in the referral process via the ERN ERKNET Clinical Patient Management System (CPMS), if required
• Collaborate with the team on the development and maintenance of a rare disease database and/or registry
• Support the implementation of ORPHAcodes, the rare disease coding system
• Maintain disease diagnosis on Renal data base
• Assist in inherited kidney disease clinic
• Contribute to development of undiagnosed registry as it applies to kidney disease
• Participate in updating information on Orphanet (European rare disease information database) as relevant to the service
• Assist in the consenting of patients and families for rare disease registries
• Support the Clinical Lead/Co Lead in the annual ERN ERKNET audit/reporting process
• Support the Clinical Lead/ Co Lead in the ERN ERKNET 5 yearly evaluation process (AMEQUIS) and compile relevant documentation

Education and Awareness
• Contribute to education and promote the awareness of rare diseases and the available treatments and resources with patients and families, healthcare professionals, and relevant external agencies
• Develop materials and mechanisms for educating referrers and community-based teams on matters relating to RD presentation, assessment and management
• Develop lecture series to educate patients on rare kidney disease

Psychosocial Support
• Identify how the service can offer practical and psychosocial support to build the capacity of patients and caregivers to improve quality of life outcomes
• Establish and develop links with relevant rare disease patient organisations to develop a patient partnership approach

Quality and Improvement
• Commit to adopting a patient partnership approach to ensure patients and families with lived experience of rare diseases inform service developments
• Develop relevant SOPs and guidelines as applicable to support the effective operation of the service
• In collaboration with the Data Manager, develop and administer KPIs, outcome measures and a process for monitoring quality of care and measuring service impact and performance
• Participate in clinical risk management where required and identify areas for improvement

Selection Criteria:
Selection criteria outline the qualifications, skills, knowledge and/or experience that the successful candidate would need to demonstrate for successful discharge of the responsibilities of the post.
Applications will be assessed on the basis of how well candidates satisfy these criteria.

Mandatory:

1. Statutory Registration, Professional Qualifications, Experience, etc
(a) Candidates must at the latest date of application:
(i) Be a Health Care professional with a recognised professional qualification in
Therapy or Nursing grade
AND
(ii) Be entitled to be so registered on an appropriate professional register e.g. CORU,
NMBI or other appropriate clinical/professional register
OR
(iii) Be eligible for membership https://www.coru.ie/ (https://www.nmbi.ie/)
OR
(iv) Health and social care therapy applicants who satisfy the conditions set out in
Section 91 of the Health and Social Care Professionals Act 2005, (see note 1
below*), must submit proof of application for registration with the Registration
Board at CORU. The acceptable proof is correspondence from the Health and
Social care Registration Board at CORU confirming their application for
registration as a Section 91 applicant.
AND
(v) All candidates must have 5 years full time (or equivalent) years post qualification
clinical experience of which 4 years full time are preferably in the renal speciality area (or equivalent) and in a post within
the healthcare service, which demonstrates evidence of a management/
leadership role in a multidisciplinary/interdisciplinary team.
AND
(vi) Professional Development and Practice:
All candidates must demonstrate evidence of continuing professional
development relevant in the renal speciality area in the form of post-graduate qualifications or relevant courses.
AND
All candidates must demonstrate achievement in the areas of clinical audit, quality
improvement initiatives, practice development, teaching and research.

AND
All candidates must demonstrate experience of interacting with multiple internal
and external stakeholders as relevant to the role.
(b) All candidates must have the requisite clinical, managerial and administrative knowledge and
ability (including a high standard of suitability and management ability) for the proper
discharge of the responsibilities and duties of this role.

2. Annual Registration
(i) On appointment, practitioners must maintain annual registration on their professional
register maintained by CORU or NMBI.
AND
(ii) Practitioners must confirm annual registration with CORU or NMBI to the HSE by way
of the annual Patient Safety Assurance Certificate (PSAC).

3. Health
Candidates for and any person holding the office must be fully competent and capable of
undertaking the duties attached to the office and be in a state of health such as would indicate a
reasonable prospect of ability to render regular and efficient service.

4. Character
Candidates for and any person holding the office must be of good character.

Desirable

• Experience working in a rare disease or specialist care setting
• Recognised postgraduate qualification relevant to role

If an appointee has previously been employed in the Civil or Public Service and that appointee is entitled to or in receipt of a pension from the Civil or Public Service or where a Civil/ Public Service pension comes into payment during the appointee’s re-employment that pension will be subject to abatement in accordance with Section 52 of the Public Service Pensions (Single Scheme and other Provisions) Act 2012.

Please note: In applying for this position you are acknowledging that you understand that the abatement provisions, where relevant, will apply. It is not envisaged that the employing Department/ Office/ Body will support an application for an abatement waiver in respect of appointments to this position