More families face organ scandal heartache

by ANDREA PERRY, femail.co.uk, at the National Summit on Organ Retention

Many more grieving families may discover that organs belonging to their loved ones have been secretly removed, the Government's Chief Medical Officer has admitted.

Speaking at the national summit on organ retention yesterday, Professor Liam Donaldson said it was 'entirely possible' that some of the 40,000 organs discovered in hospitals around the country could have come from children and adults without their relatives' approval.

With an audit report being published later this month which is expected to reveal that 40,000 organs have been kept in hospitals across Britain, many families are yet to live through the anguish that thousands of families have already felt.

Professor Donaldson declined to talk about the figures until the report is published, but a spokesman for the Department of Health said around 40,000 organs had been found in hospitals.

When asked if it was possible that many more relatives may discover their loved ones had organs removed without their consent, Professor Donaldson said: 'It's entirely possible.'

Parents have now called for a change in the law before they can ever trust the medical profession again.

Some families attending the summit in London had to hold as many as four funerals before finally laying their children to rest.

They spoke of the lack of respect shown to their children whose organs, including hearts, eyes and reproductive organs, had been retained without their consent for medical research at hospitals, most notably the Alder Hey Children's Hospital in Liverpool, plus others in Bristol, Oxford and Birmingham.

Organs from more than 800 youngsters were removed at Alder Hey without the knowledge of parents. They were uncovered in a University of Liverpool laboratory, leading Health Secretary Alan Milburn to order an independent inquiry, which is due to report at the end of this month.

Many parents found out only last year that they had buried their children without all their organs.

John O'Hare, from the campaign group PITY 2, said: 'We feel betrayed by the medical profession, especially pathologists.'

Lynne Langley, from another campaign group Stolen Hearts, said: 'We have all lost trust and faith. We regarded the medical profession as gods. They are not any more, just human beings like us.'

The action groups called for a range of measures to ensure that this never happens again, including public education about the process of post mortems and a national inspectorate to regulate the retention of tissues and organs.

Chief Medical Officer Professor Liam Donaldson said the conduct of the hospitals was an affront to the families involved.

He told the summit: 'No one denies the benefits to patients that can flow from research and teaching on human tissue. Even many of the relatives involved want to see these benefits realised but something went seriously wrong in the way that the Health Service dealt with these issues.

'Despite the grey areas in the law covering organ retention, some of these past practises are an affront to families who have lost a loved one. They belong to an era where decisions were made for patients, not with them.'

Following the scandals in Liverpool and Bristol, the Royal College of Pathologists last year published a new comprehensive guide about obtaining consent for post mortem examinations and for the retention of tissues and organs.

At the summit, Professor John Lilleyman, representing the Royal College, made a public apology for the tremendous distress suffered by the bereaved families but assured them that these practises were now confined to the past.

The hearts of 170 children at the Bristol Royal Infirmary were removed during post-mortem examinations and kept for educational purposes without the knowledge of their grieving parents. The scandal emerged during investigations into high death rates of children who underwent heart surgery there between 1984 and 1995.

In November last year, Alder Hey angered parents further by sending them a letter telling them how to bury body parts. A solicitor representing more than 100 families said the letter was 'outrageously insensitive'.

Some parents at Bristol and Alder Hey had signed consent forms, not realising they were giving doctors permission to retain their children's vital organs.

The one-day summit was taking place at the Queen Elizabeth II Conference Centre, Westminster, London and was being presided over by a panel of experts.