Sarah Boseley, health editor
Thursday January 11, 2001
The true scale of the scandal of human organ retention by hospitals will be revealed today by the government’s chief medical officer, who will tell parents and professionals that 50,000 organs are being stored in hospitals in England alone. The number far exceeds expectations.
Liam Donaldson will say that what was done in the name of the NHS over many years was an affront to families who had lost their loved ones. Addressing a public seminar, whose audience will include top pathologists and other senior doctors:
“Some of the past practices around organ retention belong to an era where decisions were made by the NHS for patients, but not with patients. This has caused a period of immense distress for families, especially in places like Bristol and Liverpool, when they found out their children’s organs were taken without their knowledge. Something went seriously wrong in the way the health service dealt with the issue of organ retention.”
Prof Donaldson will pledge that the government “will do whatever it takes to put things right, changing the law if necessary to ensure that relatives are given the right kind of information so they can give consent in a fully informed way if they choose to do so.”
At Alder Hey hospital in Liverpool, where an inquiry will report shortly, more than 3,000 children’s organs have been discovered; other hospitals were not thought to have anything like that number.
The chief medical officer will offer an unmitigated apology and assurances for the future to the parents of the Alder Hey children and those whose children died and had organs removed at the Bristol royal infirmary who have been invited to today’s seminar. None of the parents knew that hearts, brains and other whole organs would be removed and kept after the autopsy on their son or daughter.
Ian Kennedy, chairman of the inquiry into children’s deaths following heart surgery at Bristol, published an interim report into organ retention at the hospital last May. He found that the law was complex and obscure. Different laws covered hospital autopsies – which help doctors find out about the progress of disease – and those ordered by the coroner to find out the cause of death. Prof Kennedy recommended at least a new code of practice and preferably a new law.
Prof Donaldson has issued interim guidance to hospitals, requiring them to tell parents and relatives exactly what an autopsy involves and get their explicit permission if there is any need to remove organs. Today’s seminar is part of his information-gathering process on the way to producing his final report to the health secretary, Alan Milburn. That is expected, along with the Alder Hey inquiry report, before the end of the month.
Ed Bradley, chairman of the Alder Hey parents’ support group, said more than 140 parents and relatives had travelled to London for the seminar and were glad of the opportunity to give evidence, “however, we do question how much benefit can be gained from a one-day conference where we have only been given five minutes to represent our views.” They also felt it would be more appropriate to discuss the way forward after the Alder Hey inquiry had reported.
Alder Hey hospital is generally considered a special case, because whole organ systems were found to have been collected by a consultant pathologist, Dick Van Velzen, who is facing disciplinary hearings at the General Medical Council.
Bristol parents at the seminar will be asking for Prof Kennedy’s recommendations to be implemented and questioning why there has been no action since his report was published. “It was quite clear the law was in a mess,” said Steve Parker, chairman of the Bristol Heart Children’s Action Group.