Committee a ‘rubber stamp’ mechanism

THE national committee set up to coordinate services for people with haemophilia held its last meeting 13 years ago and was little more than a “rubber stamp” mechanism up to then.

The Lindsay Report says the National Haemophilia Services Coordinating Committee, which existed in one form or another since 1971, failed to fulfil many of its responsibilities.

It was supposed to advise the Department of Health and other statutory bodies involved in the care of haemophiliacs, to foster and develop the National Haemophilia Treatment Centre and regional clinics, and to ensure communication and cooperation between all parties.

But attendance at meetings was inconsistent and meetings became infrequent, the last one in 1989.

The group did not drive policy but simply rubber-stamped decisions by treating doctors and the Blood Transfusion Services Board, including decisions on the types of drugs and blood products to be used.

While the report says this was understandable because of the medical expertise of the doctors and BTSB, it was contrary to the committee’s policy. The National Drugs Advisory Board was not consulted on the choice of products, also against policy.

As time passed, “the role of the committee in regard to choice of product diminished and that even the relatively superficial examination of this issue by the committee ceased to take place”.

The report also states “there was little if any direct communication by the Coordinating Committee with persons with haemophilia”, despite its stated duty to provide information and education to enable patients to best cope with their condition.

The committee also failed in its plan to produce an information leaflet warning of the risks of HIV and/or hepatitis infection, which would have been valuable at a time when there was little reliable information available.

The report says there is little doubt that the work and effectiveness of the committee was hampered by lack of resources and, in particular, its lack of back-up administrative and secretarial services.

It was also noted that the committee members gave their time voluntarily.

But an unfortunate consequence of the committee was that its existence gave the “illusion” that there was a national service for haemophiliacs, when the reality was that services were severely limited outside of Dublin and Cork.