MEMORANDUM
Recommendations for Future
A formal role for the Irish Haemophilia Society (I.H.S.) in the selection of factor replacement therapy for people with haemophilia, von Willebrand\’s disease and related bleeding disorders.
Testing people for transfusion transmitted diseases
When tests are being carried out for transfusion transmitted diseases, the person on whom the test is being carried out should be informed of why the test is being carried out and what the test is. Adequate pre and post test counselling should be offered.
The person should be informed of the results of such tests in a timely manner.
There should be a follow-up in relation to ensuring that the person understands the test result, the ramifications of said test results and the possibilities for treatment.
A system should be put in place to ensure that all of those who will be exposed to a transmissible agent via blood products or replacement therapy are identified, traced and tested.
Accurate records should be kept of test results, when they were carried out and who was informed of the results.
Ensuring provision of treatment and services for the future
The Health Amendment Act of 1996 which relates to those who were infected with hepatitis C by blood and blood products should be monitored to ensure that its provisions are being complied with.
In particular, it should be ensured that the provisions for the following services are put in place for those persons with haemophilia and von Willebrand\’s disease who have been infected with HIV and/or Hepatitis C.
Home nursing services for the terminally ill.
Provision of home helps at appropriate times.
Provisions of hospice care when necessary.
Treatment abroad when necessary. This might, in particular, apply to the provision of liver transplants in a centre abroad, for which expertise in this particular surgery being carried out in persons with haemophilia or related bleeding disorders.
In relation to persons with haemophilia generally, the following should be ensured:
In-patient care in a designated area of the hospital. Any illness suffered by a person with haemophilia will be affected by their haemophilia. This should be recognised in a situation whereby, in addition to attending a national or regional centre, their in-patient stay in hospital would be in a designated area of the hospital or designated ward where the access by the Haemophilia Comprehensive Care Team would be ensured.
Persons with haemophilia and related bleeding disorders are very often on home therapy. All persons with haemophilia should be regularly followed up in a proactive manner by the National Centre or the Regional Centre. All persons with haemophilia should be seen regularly at the National Centre. Persons with hepatitis C infection should be seen regularly at the Hepatology Centre. Persons with HIV infection should be seen regularly at the National Centre by an infectious diseases specialist. We strongly recommend that appointments are made by the centres for each person with haemophilia at least on a six monthly basis.
National Treatment Strategy
The role of the Director of the National Haemophilia Treatment Centre, which is incorporated within the National Centre for Inherited Bleeding Disorders, must be defined in relation to the co-ordination of haemophilia care on a national basis. The role should also be defined in relation to the interaction of said Director with the haemophilia treatment services in Cork, Galway and other cities.
There should be defined national treatment protocols for haemophilia in relation to bleeding disorders, which should be adhered to in all treatment centres around the country.
National Centre and Regional Centres must be subject to external audit on a biennial basis. Audit of the National Centre should be carried out by a group from the UK. Audit of the Regional Centres should be carried out by a group from the UK assisted by the National Director. The UK Haemophilia Centre Directors Organisation have a well defined periodic audit procedure for Haemophilia Reference Centres, which should be employed in this jurisdiction.
The National Centre should provide expertise and guidance to the other recognised treatment centres and to Haematologists and hospitals throughout the country as required. The service should be consultant driven with an appropriate comprehensive care team available. The National Centre should provide a service on a seven day a week basis.
Co-ordination and co-operation between the National Centre, the main centre for the treatment of children with bleeding disorders and the recognised regional centres must be optimised to ensure a high-quality treatment service is provided.
A National Haemophilia Council (NHC) should be set up. The remit of this council should be to review all aspects of haemophilia treatment services, advise the Minister for Health or make recommendations to the Minister in relation to such services, and to take decisions in relation to the provision of co-ordinated care for persons with haemophilia and related bleeding disorders on a national basis. The NHC should consist of the Director of the National Haemophilia Treatment Centre, the Directors of recognised Regional Treatment Centres, the Department of Health and the Irish Haemophilia Society.
The Irish Haemophilia Society must be enabled to have available expertise from outside of its own organisation to assist in this participation in the NHC and other bodies.
Funding of I.H.S.
There should be a commitment to an annually sustained amount of funding for the I.H.S. to allow the organisation to provide services for people with haemophilia, von Willebrand\’s disease and related bleeding disorders, and also to provide services to people with haemophilia, von Willebrand\’s disease and related bleeding disorders who are infected with HIV and/or hepatitis C. A reasonable amount of baseline funding should be provided for the I.H.S. on an annual basis. This amount should be increased each year in line with inflation. Additional funding should be provided based on applications for specific purposes.