Since the discovery, more than three years ago, that Professor Dick van Velzen had been stockpiling babies' organs at Alder Hey children's hospital, evidence has gradually emerged that organ retention without informed consent has been standard practice at more than 150 hospitals around the UK - since at least the 1960s.
A national organ retention legal action brought by solicitors in January this year on behalf of more than 2,000 families whose relatives' organs were removed and retained following post-mortem examinations has so far failed to achieve a settlement, despite the judge ruling in favour of the majority - some 1,800 claimants. Negotiations to agree on the level of the settlement are continuing.
Cases where organs were retained following a coroner's post-mortem - rather than a hospital (medical) post-mortem - were not successful, as here consent is not required in law.
Many families who agreed to a hospital's request for a medical post-mortem to determine cause of death describe how they were not made fully aware of their options or the true implications of what they were signing. "When you're in that situation you don't know about the rules and being able to say no; they don't tell you," explains Ruth Webster, whose baby daughter Ellen died of septicaemia in 1987 at Leeds General infirmary.
She describes being told that "limited tissue samples" would be taken and how she assumed this meant "a bit of skin and maybe a blood sample". In fact, a total of 42 organs were removed and retained from baby Ellen, who was less than four weeks old and weighed just three pounds. "Everything that possibly could be taken was taken," says Mrs Webster.
She recalls how the hospital presented the post mortem as a way of seeing "if they had any problems for the future" - "so that we could know whether any of our other children might be infected".
"Now they knew she died of septicaemia - an infection that she caught. But that's something you're not going to give to your other children. They were treating her for it, they knew she died of it, and they still went ahead and took 42 parts of her."
The truth about organ retention in hospital practice has been slow to emerge. Many families describe how years passed before the scandals at Alder Hey and Bristol Royal infirmary led to sudden doubts about their own loved ones.
"We're still getting phone calls now from parents," confirms Patricia Chatterton, who runs an organ retention support group in Sheffield with her friend Margaret Tory. "We had one last week - a lady in Pontefract. She'd just received her letter and didn't know which way to turn.
"It takes a lot for people to phone up [the hospital]. They're absolutely terrified. But in the end it does get the better of you and you've got to know."
"We've got an old lady in Brimington who's in her 80s," adds Mrs Tory. "She's found out that it happened to her daughter in 1952. So how long has it been going on? I don't know how things have been kept so quiet for so long."
Inevitably, families speak of how their trust in medical staff has been severely undermined, not just by the act of organ retention itself - which may have been performed decades ago by a pathologist who has now retired - but by the difficulties they have had in arriving at the truth, the manner in which their enquiries have been dealt with and the unanswered questions that remain.
Asked to comment on the apparent lack of comprehensive organ retention records, the chief executive of Sheffield Children's NHS Trust, Chris Sharratt, made the following statement: "The historical lack of records has hampered trusts in the answering of questions asked about organ retention by families. We have given answers where the records have been sufficient, but we have been unable to answer some questions, especially where it is very many years after the death occurred. In some cases the surviving records are unclear or ambiguous, and it has been impossible to give the final answers that we know families wanted.
"One of the recent changes is that much more detailed records of families' wishes are now kept, which should enable us to keep better track of what happens at post mortems in future."
A spokesperson for Leeds Teaching Hospitals NHS Trust said: "Leeds Teaching Hospitals greatly regrets the distress suffered by families as a consequence of organ retention, and has sincerely apologised for its part in what was a national approach to post-mortems and organ retention. At the time doctors and pathologists thought the practice would benefit medical research and teaching as well as establishing cause of death and any risk to other family members, alive or yet to be born.
"We fully accept that previous practice was wrong and through working in conjunction with families, practice has now changed. Today in the NHS organs are retained only where relatives have given fully informed consent."
Since December 2003, parliament has been debating a human tissue bill, which has the stated aim of "preventing the removal of body organs or tissue without proper consent". In June this year, after representations from the scientific and research communities, the bill was modified to allow tissue removed from living patients to be used for research without express consent. In a vote on Monday, October 25, the House of Lords rejected these planned restrictions on the bill's core principle of consent. The government will seek to reverse the Lords' decision.
The bill is set for a third and final reading this month.
