|About||The principal function of the Council is to advise the Minister, health service agencies and other persons on any matter relating to haemophilia, on its own initiative or at the request of the Minister, or a health agency.|
National Haemophilia Council - Terms of Reference
Wherever “haemophilia” is referred to in this document it will be taken to mean the following disorders: inhibitors to factors VIII and IX, inherited deficiencies of factors I, II, V, VII, VIII, IX, X, XI, XIII and Von Willebrands disease.
•To advise and make recommendations to the Minister for Health and Children on all aspects of haemophilia, on its own initiative or at the request of the Minister, and in particular on:
•all aspects of the care and treatment of persons with haemophilia;
•the health and counselling services for persons with haemophilia, including the funding of such services each year, to ensure that such funding is sufficient to provide the range of services required;
•the organisation, delivery and confidentiality of services for persons with haemophilia, including specialist services such as dental and orthopaedic services;
•a Quality Management System, including audit, of services for persons with haemophilia;
•education and training of healthcare professionals who provide services for persons with haemophilia;
•education, awareness and health promotion for persons with haemophilia and their families;
•the changing needs of persons with Haemophilia infected with HIV and Hepatitis in order to ensure that the health services respond effectively to such changing needs;
•developments arising from research into haemophilia;
•the publication of information on haemophilia.
Procedures / Responsibilities
The National Haemophilia Council will:
•Liaise with the National Centre, regional treatment providers, Department of Health and Children, statutory authorities, and relevant national and international representative groups, as necessary, in order to fulfil its mandate.
•Recommend that an appropriate quality management system is put in place and ensure that the National Centre commissions an appropriate and competent external audit of the National Centre for Hereditary Co