Amyloidosis Care Coordinator (06.029 (2025))

Permanent Full-Time

Tallaght, County Dublin, Ireland

Job Details

Job Title: Amyloidosis Care Coordinator
Grade Code: 3070
Reference No: 06.029(2025)
Department/Directorate: Medical Directorate
Reports to: Clinical Lead/Co Lead on the Rare Disease Programme of work & to The Director of Nursing/HSCP Manager as appropriate

Tallaght University Hospital (TUH) is a model 4, voluntary, academic teaching hospital partnered with Trinity College and situated in south west Dublin. With a staff of over 4,000 people from 63 different countries, it provides both acute and tertiary care to an increasing population of circa 800,000 people and is a provider of local, regional and national specialties. It is also a National Urology Centre, the second largest provider of dialysis services in the country, Pelvic and Acetabulum National Centre and a designated Trauma Unit. 

The Hospital is part of the newly established HSE Dublin & Midlands Region, which serves a population of over 1.2 million across seven counties, and operates under the governance of an independent Board of Directors who give their time on a voluntary basis. TUH is also supported by the Adelaide Health Foundation, the Meath Foundation and Tallaght University Hospital Foundation.
 
TUH recognises the role it plays in our community both as an employer and provider of healthcare and is committed to building a sustainable future for our region both now and into the future with a focus on patient outcomes.

The Hospital is ambitious, recognising that healthcare delivery is undergoing seismic change and will be different now and into the future, largely due to digital and technological advances along with research continuing to discover and test new treatment options. TUH wants to be a leader in determining that future. It is a “Hospital without Walls” always looking to optimise care both within and beyond in line with the Sláintecare vision of providing the right care, in the right place, at the right time whilst empowering our patients and staff. 


TUH Vision and Values
The vision of the Hospital is “People Caring for People to Live Better Lives” through excellent health outcomes supported by evidenced based practice, positive patient and staff experience in an empowering and caring environment. A culture of innovation and quality improvement in everything we do.

Our TUH CARE values – for patients, their families, our community and staff are:
  • Collaborate – together and with our academic and care partners
  • Achieve – our goals, positive outcomes and wellbeing
  • Respect – for patients, each other and our environment
  • Equity – for patients and staff
At TUH we view our staff as our most valuable asset and every member of the Team is valued equally.  We recognise that a skilled, satisfied and motivated workforce is a prerequisite to high quality care.

A full overview of TUH is available on www.tuh.ie/about us

PURPOSE OF THE ROLE:
The Amyloidosis Care Coordinator will have a central role in the coordination of multidisciplinary amyloidosis 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 high quality and effective amyloidosis service and will identify service quality improvements through a patient partnership approach.  The Care Coordinator will coordinate submissions to the Medicines Management Programme for disease modifying therapy and assist with monitoring of such therapies.

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

OVERVIEW OF ROLE:

Key Duties and Responsibilities

Patient Care Coordination
  • Co-ordinate patients' care plans across cross-sectoral specialties and disciplines, in particular across the Irish Expert Amyloidosis Network
  • Establish and support the development of agreed amyloidosis referral pathways and processes across both acute and community-based settings
  • Provide specialist support, information and liaison services to patients/families and carers
  • Participate in the development and implementation of amyloidosis care pathways in collaboration with patient organisations and multidisciplinary stakeholders, and the National Rare Diseases Office (as required)
  • Coordinate and actively participate in multidisciplinary team meetings, including development of standardised templates for documentation

ERN Coordination and Support
  • Support the Clinical Lead/Co Lead in the coordination of amyloidosis relevant ERN  activities 
  • Assist the Clinical Lead/Co Lead in the referral process via the ERN Clinical Patient Management System​ (CPMS)
  • Collaborate with the team on the development and maintenance of an amyloidosis 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 amyloidosis registries
  • Support the Clinical Lead/Co Lead in the annual ERN audit/reporting process, where relevant to amyloidosis
  • Support the Clinical Lead/ Co Lead in the ERN 5 yearly evaluation process (AMEQUIS) and compile relevant documentation, where relevant
Education and Awareness
  • Contribute to the education and promote the awareness of amyloidosis  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 amyloidosis presentation, assessment and management
Psychosocial Support
  • Identify how the service can offer practical and psychosocial support across the RITA-Ireland network to build the capacity of patients and caregivers to improve quality of life outcome
  • 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 and identify areas for improvement where required

GENERAL ACCOUNTABILITY:
  • Commitment to continuous professional development including completion of relevant internal training programmes available through our Centre for Learning & Development Prospectus.

QUALIFICATIONS / EXPERIENCE REQUIRED:

Must Have Criteria:
  • Be a Health Care professional with a recognised professional qualification in Therapy or Nursing grade
  • Be entitled to be so registered on an appropriate professional register e.g. CORU, NMBI or other appropriate clinical/professional register.
  • Minimum of 5 years’ experience post qualification
  • 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 and Excel

Desirable criteria:
  • Experience working in a rare disease or specialist care setting
  • Recognised postgraduate qualification relevant to role
  • Demonstrated achievement in the areas of clinical audit, quality improvement initiatives, practice development, teaching and research

REWARD & RECOGNITION:
  • Remuneration is in accordance with the Department of Health Consolidated Salary Scales.  Effective 1st March 2025 - € 69,998 - €81,228
  • The appointment is fulltime, permanent and pensionable
  • The annual leave entitlement is in line with terms and conditions of the clinical relevant grade.The leave year runs from 1st April to the 31st of March each year.
  • Normal working hours are in line with the clinical relevant grade. Your contracted hours of work are liable to change between the hours of 8 am to 8 pm over 7 days to meet the requirements for extended day services in accordance with the terms of the Framework Agreement

APPLICATION PROCESS:
Applications can be submitted ‘on-line’ at www.tuh.ie/careers by completing the application form and attaching your CV.  Candidates should be aware that, when applying for a post through the 'On-Line' Application System (Candidate Manager) they will receive an automated replying acknowledging receipt of their application.  Should you for any reason, not receive this automated acknowledgement, you should notify the Human Resources Department, before the closing date, otherwise your application will not be considered.

All candidates should note that, in order to maintain a timely process, the closing date and time for receipt of applications will be strictly adhered to.

Informal Enquiries to: Professor Sinead Murphy,  Clinical Lead for the National Clinical Programme for Neurology & Consultant Neurologist, TUH - Email: sinead.murphy@tuh.ie

Closing Date: Before close of business on 14th July 2025