European Reference Network (ERN) RITA Rare Disease Care Coordinator (Endocrinology)

Purpose of the role

The Rare Disease Endo ERN Care Coordinator will have a central role in the coordination of multidisciplinary rare disease care pathways patient and family rare disease support advocacy and 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 ENDO ERN Care Coordinator will report to the ENDO ERN Clinical Lead/Co Lead on the rare disease programme of work and to the Directorate Nurse Manager of the supervising Directorate for operational supervision.

Areas of responsibility and principal duties relevant to the ENDO ERN / Rare Disease Service

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

ENDO ERN Coordination and Support
Support the Clinical Lead/Co Lead in the coordination of ENDO ERN activities
Assist the Clinical Lead/Co Lead in the referral process via the ENDO ERN 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
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 ENDO ERN audit/reporting process
Support the Clinical Lead/ Co Lead in the ENDO ERN 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

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 ( 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 Endocrinology 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 Endocrinology speciality areain 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 Criteria

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

Demonstrated experience of working in partnership with clinicians patients and caregivers to improve care outcomes
Experience delivering quality improvement in a healthcare environment
Previous management experience
Experience working in and leading a team in an acute hospital environment
Experience with Microsoft Office Suite including Outlook

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 appointees 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