No organs of dead children have been retained at the Royal Liverpool Children's Hospital, Alder Hey, since last September, when it was revealed that the parents had never understood that hearts, brains and other 'tissue' could be kept for years.
Today's launch of the Royal College of Pathologists' new guidelines for keeping organs after post-mortem examinations follows swiftly after the resignation of Alder Hey's chair, Frank Taylor.
Mr Taylor finally had to go when the hospital revealed it had 'mistakenly disposed of ' organs that were to be given back for burial.
The guidelines were drawn up by the Royal College of Pathologists after extensive consultation with patient and parent groups, the Department of Health, the General Medical Council, the other royal colleges, and other bodies. They will spell out the legal and ethical aspects of organ retention for the first time.
The recommendations include training for medical and other personnel seeking agreement for postmortems (see below).
The guidelines include a model consent form and a relatives' information leaflet.
'In the past it was not usual to describe details of how post-mortem examinations were carried out because of a natural desire to avoid adding to the distress of bereaved relatives, ' says Professor John Lilleyman, president of the Royal College of Pathologists.
'It is clear now that this is no longer appropriate and, in future, every thing will be fully explained. The information leaflet for relatives helps with this, and the model consent form makes it explicit what is being agreed to.
College vice-president and chair of the guidelines working group Professor James Underwood adds: 'The guidelines are intended to ensure post-mortem examinations have public support and are conducted in a respectful manner, in which bereaved parents and relatives have confidence.
'Post-mortem examinations are important because careful study of the body's tissues after death enables greater understanding of disease, which may benefit not only future patients but also help the bereaved family in coming to terms with their loss. ' This does not seem to have been much comfort to the Liverpool parents.
Two other enquiries set up in the wake of the Alder Hey revelations will report later this year. Chief medical officer Professor Liam Donaldson is investigating the level of organ retention across the NHS and is expected to issue interim guidance shortly, with a full report in the autumn.
Meanwhile, the independent enquiry set up by health secretary Alan Milburn to look into the removal, retention and storage of organs at Alder Hey is due to report in the summer. Michael Redfern QC, a specialist in clinical negligence, is chairing the enquiry.
He has pledged 'to leave no stone unturned in establishing the facts', adding that, in recommending steps to prevent a recurrence of the situation at Alder Hey, there may need to be changes in the law.
Solicitor Ian Cohen, who acts for Pity II, Liverpool parents' support group, says the issue is about knowledge and informed consent. 'Up to 70 per cent of the parents of children who died at Alder Hey would have consented to the retention of organs had they been properly informed, 'he says.
'It is also important that, in future, a distinction is made between tissue and full organ retention.
'It is not sufficient for the medical profession to understand what is being asked, the lay person also has to understand. '
Wendy Natale, chief officer with Liverpool Eastern community health council, says: 'The Alder Hey parents want to see an agreement that is absolutely crystal clear and legally binding, so that what happened to them can never happen to anyone else in the future. '
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