Treatment centre criticised for delayed actions

The report finds major problems with prompt dissemination of information to patients, writes Alison Healy

The report finds major problems with prompt dissemination of information to patients, writes Alison Healy

The standard of medical care provided by the National Haemophilia Treatment Centre (NHTC) in St James's Hospital in Dublin was "high" and the staff applied limited resources with considerable skill, courage and dedication, the tribunal has found.

"The inadequacies in the available facilities and resources in some areas created additional problems and strain for the staff of the National Haemophilia Treatment Centre as well as the patients," the report says.

However, it found major problems with the prompt dissemination of information to patients on several occasions, particularly in the case of HIV test results in 1985. Some patients had samples taken in 1985 and were not informed of the results until 1987, according to the report.

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Prof Ian Temperley, medical director of the NHTC, received batches of results from a Middlesex laboratory in March and April 1985 but took a sabbatical from May to October 1985 without putting in place a system of informing patients of the results.

Locums informed some patients of these results during that time but the tribunal found it was "most unfortunate" that Prof Temperley was absent during this time.

The tribunal got the impression that some patients felt betrayed by this and his absence had increased their feelings of hurt and anger.

Justice Lindsay was also critical of the centre's "unacceptably long" delay in preparing a response to the risk of AIDS.

Some time in June 1983, directors of British haemophilia centres, as well as Prof Temperley, appeared to have received a letter referring to a possible case of AIDS in a patient with haemophilia.

However, the NHTC did not introduce its policy on AIDS until December 1983. Reasons given by Prof Temperley did not adequately explain the delay in producing the policy, the report stated.

When the risk of AIDS from commercial concentrates arose, the NHTC should have reviewed its policy of routinely starting patients on home treatments with commercial concentrates, the report says.

It says the centre should have made "strenuous efforts" to switch all haemophilia B patients from a commercial concentrate to another product, BTSB Factor IX, as part of its response to AIDS in 1983.

The tribunal also found that the NHTC should have recalled all unheated BTSB Factor IX from patients in October 1985 when a heat-treated product became available.

The NHTC could not say if a recall was ordered but the tribunal found it was unlikely. Had a recall happened, it may have prevented the death of a patient, with the pseudonym "Mark", who appeared to have been infected by one or more treatments received between November 1985 and February 1986.

The tribunal also found it "unacceptable" that the NHTC did not adopt a policy on providing special products for previously untreated patients so that the risk of infection would be reduced or eliminated.

On the issue of hepatitis C, the tribunal found that the risk of hepatitis should have been discussed with haemophilia patients who were starting home treatment with commercial concentrates in the late 1970s.

The risk of hepatitis was being discussed at that time but, in his evidence, Prof Temperley could not recall if patients would have been informed of this.

"The tribunal feels such a discussion should have taken place," the report states.

It also found that the NHTC did not seem to have any formal means of communicating with its regional centres on policy matters and did not seem to have the resources to give these doctors information on issues such as the risk of hepatitis.

The report says the national centre should have informed other treating centres and doctors of its decision to stop using unheated products after November 1985.

In the case of the late John Berry, who appeared to have contracted hepatitis C from a concentrate used to stop a nose bleed in St James's Hospital, the tribunal found that the use of the concentrate Hemofil was "clinically justified" in the circumstances.

Commercial concentrates carried a greater risk of hepatitis C but it was used in this case because there was not enough sterile water available to use cryoprecipitate and Mr Berry was in danger of collapse.

"With the benefit of hindsight, it can be seen that this treatment had tragic consequences for Mr Berry in that it was the probable source of his infection with hepatitis C," the report states.

"The tribunal believes sterile water should have been available. Twenty-three years later, it is too late to discover why it was not."