Goals of the strategic plan
- Advocate for the provision of optimum haemophilia care nationally
- Provision of appropriate information, education and research
- Ensure viability and effectiveness by measuring performance and outcomes
- Optimise development and function of the National Haemophilia Council
Advocate for the provision of optimum haemophilia care nationally
- Organise external peer-reviewed audits of Comprehensive Care Centres (EHCCC) every 3 years.
- Organise external peer-reviewed audits of EHTC’s by an Irish-based team every 3 years.
- Advise on the setting of clear priorities (Level 1 – EHCCC) following the audits every 2/3 years.
- Advise on the setting of clear priorities for the development of haemophilia care in the haemophilia treatment centres (Level 2 – EHTC) and hospitals with a haematologist (Level 3).
- Advise on the prioritisation for allocation of additional funding to meet priorities identified by audits.
- Publication, dissemination, utilisation of National Haemophilia Treatment Guidelines for all levels of haemophilia care.
- Ensure optimum two-way communication between hospitals and comprehensive care centres.
- Take into account international developments in haemophilia care.
- Regular engagement with key stakeholders by the NHC Administrator and Council and systematic reporting back to Council.
- Define and review the designation of treatment centres.
- Ensure that the national budget for the provision of factor concentrates is maintained at an appropriate level.
- Ensure appropriate monitoring of factor concentrate utilisation nationally.
- Advise on the implementation of new developments in haemophilia care, including longer acting factor, gene therapy, PK-tailored therapy and self-management.
- Advise and review any proposals on any reconfiguration or funding of health services, which may impact on haemophilia care. (This may include the development of hospital groups, the introduction of universal health insurance, and the re-development of the adult and paediatric haemophilia facilities)
- Promote the implementation of a quality improvement programme 24/7.
- Develop the roles of haemophilia nurse specialists to allow enhancement of the service.
Provision of appropriate information, education and research
- Review and formal dissemination of treatment guidelines every 3 years.
- Identify priorities for communication from the NHC to people with haemophilia, health care workers and other stakeholders.
- Update and maintain the website on a regular basis.
- Document and process implementing guidelines changes.
- Examine the feasibility of organising a specifically focused international meeting in Ireland.
- Encourage research from the HTC’s and the Irish Haemophilia Society.
- Optimise the value in the information day meeting for healthcare workers/patients.
- Allocate the responsibility to update the website link to research/information on the NHC website.
- Work on publications/education with the Irish Haemophilia Society.
- CPD of nursing staff – training pack. Implement and evaluate.
- Facilitate and co-operate with the development of recognised accredited Nursing Programmes.
Ensure viability and effectiveness by measuring performance and outcomes
- Ensure that the haemophilia services (Level 1, 2 & 3) carry out regular internal audits of compliance with the guidelines and standards set by the National Haemophilia Council & that the Centres hold continual internal audits including patients participation.
- Ensure there are regular progress reports.
- Provide formal/informal feedback mechanisms.
Optimise development and function of the National Haemophilia Council
- Advise the Minister for Health and Health Service Executive on any matter relating to haemophilia.
- Hold an annual meeting with the Health Service Executive and the Minister for Health.
- Benchmark our work against best international practice/trends in managing haemophilia.
- Hold an annual meeting with the CEO’s of the comprehensive care centres. (CCC, OLCHC, CUH)
- Hold an annual meeting with the haemophilia teams at the comprehensive care centres.
- Members to have a basic grounding in all aspects of haemophilia.
- Have a formal update from the Haemophilia Product Selection and Monitoring Advisory Board.