Separate treatment services still presenting problems - Temperley

The separation of specialist treatment services for adults and children with haemophilia presented enormous difficulties in the…

The separation of specialist treatment services for adults and children with haemophilia presented enormous difficulties in the past and continues to present problems today, the tribunal heard.

The former director of the National Haemophilia Treatment Centre, Prof Ian Temperley, said the services had been divided since their establishment in 1971, but this was not something he wanted.

He said the services were at first divided between the Meath Hospital and the National Children's Hospital, Harcourt Street.

"We did not want to have the two separated," he said. The division was made because it was felt that if a child became very ill from some problem other than haemophilia, the back-up of paediatricians, not available in an adult hospital, would be required. He said the situation perpetuated itself because in 1976, just as the national centre was about to move to St James's Hospital, the paediatric unit there closed, preventing them from moving the children's unit from the National Children's Hospital.

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"It presented enormous difficulties because the amount of expertise we had available and the amount of staff we had available was very limited and very small. So to divide that up into two was quite difficult and we never got together."

The division meant expertise was "spread out very thinly", he said. "It always created problems and indeed even today there are still difficulties regarding this aspect of the work."

Prof Temperley said treatment options were limited for haemophiliacs. The average lifespan for 110 haemophiliacs registered at the national treatment centre when it opened was 15 years and only 11 of those registered were over 30 years.

The advent of imported clotting agents which were available in concentrated form and could be used for home therapy changed this, he said.

He said he tried to increase the use of concentrates in the late 1970s but could not recall if haemophiliacs were told of the risks attached to their use. He accepted the risk of hepatitis from commercial concentrate was known but said the advantages of using the products had to be balanced against this.

Counsel for the tribunal, Mr John Finlay SC, referred to a study done by Dr Helena Daly at the time which concluded: "The use of factor concentrate therapy results in a vast improvement in the quality of life for the haemophiliac who can treat himself at home. However, if this brings with it a definite threat of liver disease, then risk may exceed benefit."

Dr Daly, then a junior doctor under Prof Temperley, recommended that mild haemophiliacs no longer be given imported concentrates. Mr Finlay asked if this policy was adopted. Prof Temperley said the risk of hepatitis was not taken seriously compared to the advantages of factor concentrates. He said mild haemophiliacs were given imported concentrates despite the recommendation.