Debate on where to have child cancer treated focuses on need to keep up with best international practice

AT one level it looks like another tale of professional and institutional rivalry - in a State which has a plethora of medical…

AT one level it looks like another tale of professional and institutional rivalry - in a State which has a plethora of medical institutions, each with its own history, culture and area of excellence, there is always resistance to rationalisation which might impact on any or all of these.

But for some medical experts there is more at stake - the need to be subject to international controls to ensure that Irish medical practice meets the highest international criteria. "After Bristol, after the hepatitis C scandal, people want to be sure you're getting it right," said one senior paediatric haematologist.

In a briefing note to the Minister for Health last November the Department recommended acceptance of a report from the National Cancer Forum that all malignant diseases in children, including leukaemia, should initially be referred for diagnosis and treatment planning to Our Lady's Hospital for Sick Children, Crumlin.

Among the arguments considered by the members of the forum who voted for this report was the fact that relatively few children are diagnosed with leukaemia every year, the high level of expertise in solid cancers in Our Lady's and the need to avoid duplication of services where possible.

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However, since the forum meeting the question of entering patients into international "peer-reviewed" trials has been raised with the Department by a number of experts. Such trials mean that every detail of the child's circumstances and symptoms, including slides of clinical samples, are sent to a recognised centre for examination and verification, and the treatment is carried out according to agreed protocols laid down and monitored by the centre.

The process was described as follows by one expert who is involved in such trials: "Your diagnosis is checked. All the details are entered and randomised. Forms come back checking all sorts of details. The slides are all sent away and the samples entered. Your results are audited. Everything is audited from the diagnosis to the protocols. If your children are not doing so well then the men in the blue suits come in."

Since the early 1970s all children diagnosed with leukaemia in the National Children's Hospital, formerly in Harcourt Street and now in Tallaght, have been entered in the London-based Medical Research Council Childhood Leukaemia Working Party, which reviews guidelines, protocols and international practice.

One lay member of the National Cancer Forum raised the question of the involvement of Our Lady's in Crumlin in international trials. "We were told they were, but that it was a different one, a German one [trials]," this person told The Irish Times.

The German peer-reviewed trials are carried out by the German Paediatric Leukaemia Group (the ALL-BFM trials). Following the meeting of the forum an inquiry was sent by Prof Sean McCann of St James's haematology department to the German BFM, asking whether Irish patients were involved in its trials. The chairman of the ALL-BFM study group, Dr Martin Schrappe, replied: "We can assure you that no Irish patients have been entered in the German ALL-BFM trial."

A spokesman for Our Lady's denied its representative had told the forum that it entered its patients in the ALL-BFM trials. "Our children are treated according to the German protocols," he told The Irish Times. "They have better results than the English ones." It had not been able to enter children in the German trials because of a lack of clerical resources, he said.

He added that enrolment in international trials conferred very little benefit. "The benefit is for future children," he said. "We regret that we could not be involved in advancing the science and we are now looking at entering our children in the British trials. Their results have now improved and the survival rates from the British and German protocols are equivalent."

He pointed to the multi-disciplinary expertise in many areas of paediatrics which exists in Crumlin, and said that various international bodies had recommended that children suffering from leukaemia should be treated in specialised children's cancer centres.

However, international expert opinion stresses the importance of involvement in peer-reviewed trials. A position statement on paediatric haematology/oncology in the US-based Journal of Pediatric Hematology/Oncology states: "For childhood cancers and serious blood disorders standards of care and patterns of referral for management must be developed to permit or enhance participation in peer-reviewed clinical trials. Such trials are the only way to guarantee continued improvement in treatment outcome or cure, the ultimate endpoint of quality of care."

Dr Ian Hann, consultant haematologist in Great Ormond Street Hospital in London, is adamant that this is best practice. "How can you follow the protocols if you're not in the trials?" he asked.

"There is no doubt whatsoever that the dramatic improvement in the management of childhood leukaemia in the past 30 years is because of international collaboration and international meetings.

"Doctors are human. They do make mistakes. In the trials every aspect of the lab work is internally and externally checked. The tests which identify the type of leukaemia are improving over the past number of years because they are reviewed."

The drive to rationalise children's medicine in Dublin clearly has its attractions, and the proposal to concentrate it all in Crumlin has been around for decades. Yet it has not happened.

"It would be fine in an ideal world," said one senior doctor. "But it's all about clinical governance and best clinical practice. You have to have accreditation, diagnosis and peer review."

For the NCH component of Tallaght it is a question of survival. Without this unit it fears its status as a centre for teaching paediatrics will be compromised. It also argues that, given the hugely improved survival rate of children with leukaemia, it is now best practice to be able to continue their treatment into adulthood in a centre which includes expertise in adult haematological disorders.

The issue of how this recommendation from the Department is to be implemented has been referred to a group made up of the three chairmen of the three paediatric hospitals. But it is unlikely this will come up with a quick solution.