‘Give patients say over drugs’

HAEMOPHILIACS should have a say in the choice of drugs made available to treat their condition, Judge Lindsay says in her report.

She recommends that a permanent committee be set up to co-ordinate services for people with haemophilia, with a key function being the monitoring and choosing of drugs used.

Judge Lindsay says the committee should be established by the minister for health in conjunction with haemophiliacs, their doctors, carers and support teams and include representatives from all interested parties.

Consideration should be given to giving it statutory powers, she says, and it must be well resourced, properly staffed and have adequate office facilities. The proposal is one of eight recommendations Judge Lindsay felt compelled to make despite her acknowledgement that policy and practice has improved considerably since the period under investigation by the tribunal.

She calls for more consultant haematologists to be appointed to care for haemophiliacs.

Until recently, the number of posts was “grossly inadequate,” she says, and further efforts were required to ensure an adequate service. She also says there should be greater co-operation and exchange of information among the various doctors who treat and care for haemophiliacs.

She found that co-operation between the National Haemophilia Treatment Centre and regional centres and hospitals was “haphazard” and says representatives should convene a national meeting for practitioners at least once a year.

She also recommends individual medical records be better compiled and maintained, as existing records were sometimes “unsatisfactory and incomplete,” and she calls for a national confidential data base of information on patients to track and record progress and problems with haemophilia.

The report says all test results should be given to patients unless there is some compelling medical reason for withholding the information.

Any patients receiving results likely to be upsetting or disturbing should be provided with immediate advice and arrangements made for counselling.

Any donors found to have contaminated blood under any new tests that may be devised should also be told the results without delay and again should be provided with advice and counselling.

As an underlying principle governing all services, the report says all blood products used to treat people with haemophilia should be of the highest standard and safest nature available.

Judge Lindsay does not recommend that a copy of her report be sent to the Director of Public Prosecutions, although she does not advise against such a move.

She concludes: “It is not the function of a tribunal of inquiry to decide issues of criminal or civil liability.

“The tribunal is of the view that it is not appropriate in these circumstances to send a copy of the report to the director.”