Call for end to 'NHS secret society'

Campaigners want laws changed after Alder Hey scandal

Health Secretary Alan Milburn has signalled that the government will introduce legislation to tighten the rules surrounding medical consent in the wake of the Alder Hey organs scandal.

Mr Milburn said it will probably be necessary to change the law to make sure doctors gain the informed permission of patients and relatives before removing organs.

He is also likely to implement changes in medical training for doctors to make them more aware of the sensibilities of patients and their relatives.

Mr Milburn's pledges came ahead of a report expected on Tuesday into the removal and storage of children's organs at Alder Hey Children's Hospital in Liverpool.

The days have gone when the NHS can act as a secret society

Health Secretary Alan Milburn

Mr Milburn said the report was the most shocking he had ever read.

The government wants consent procedures to be clear, after it emerged parents had given consent for "tissue" to be removed without realising this could include entire organs.

In a speech to patients' groups on Monday, Mr Milburn said that in the future the rights of the individual must come before the needs of science.

He added that consent must be based on discussion and positively given.

"For trust to thrive there has to be informed consent not just a tick-in-the-box consent regime."

Mr Milburn told the BBC that the report into Alder Hey raised "fundamental issues" about the relationship that patients and doctors should have.

He said: "What it reveals all too clearly is that patients will no longer accept the rather traditional, paternalistic attitude of the NHS that the benefits of medicine, science or research are self-evident regardless of the wishes of patients or their families - frankly that has to change.

"The days have gone when the NHS can act as a secret society.

"It has to take patients into its confidence. It has to actively earn the trust of patients in life, but it has also got to actively seek the consent of relatives in death."

Truth

His comments have been welcomed by parents like Brenda Conlan, who found out almost 20 years after the death of her six-month old son Kenneth that she had buried him without his heart and lungs.

Tuesday's report into Alder Hey will document thousands of cases like hers. It is the result of an independent inquiry by Michael Redfern QC.

She said of the Health Secretary: "I hope that from his comments which are fairly strong that he has been as shocked as the parents have been."

Alan Milburn will address parents

She added: "We hope that law will be put into place rather than guidelines."

Cindy Bewes had twins which were stillborn but it was 14 years later that she discovered their children's bodies had been kept for research, not buried.

She said: "We need to know the truth and if they're there give us them back because they are ours."

Her solicitor, Ian Cohen, thinks the law should be changed to make the keeping of organs without consent an imprisonable offence.

The true extent of organ removal at NHS hospitals across Britain is expected to be revealed in a separate report by the Chief Medical Officer Professor Liam Donaldson.

Report 'grotesque'

The Department of Health has refused to confirm reports in the Sunday Telegraph that the report will reveal more than half of Britain's major hospitals have removed organs without clearly informing patients' relatives.

A Department of Health spokeswoman said the report was considering whether consent procedures were clear enough.

Parent Brenda Conlan hopes law will be changed

In December 1999 the Alder Hey Hospital apologised for taking hearts, brains and other body parts from more than 800 children's bodies without seeking permission from their parents.

They were removed by Professor van Velzen from children who died between 1988 and 1995, and stored in a cellar.

Last week it was revealed the hospital and Birmingham Children's Hospital gave body parts removed during heart operations to a pharmaceutical company.

Parents say the thymus glands were taken from the children without consent.

Cash was later donated by the pharmaceutical companies concerned to the hospitals.

Doctors' reaction

Dr Michael Wilks, Chairman of the BMA's Medical Ethics Committee, said it was clear that legal uncertainties surrounding the conduct of post mortem examinations had to be resolved.

Anything that will get us out of this morass will be welcome

Professor John Lilleyman, Royal College of Pathologists

He said: "I very much regret the distress caused to parents whose children's organs were removed without their consent or knowledge.

"The report is bound to renew those feelings of grief but I hope that in the coming weeks, we can reassure those parents and the wider public that practice in relation to organ and tissue retention really has now changed.

"Doctors genuinely want to work in partnership with their patients and to give them as much information as they want."

Professor John Lilleyman, President of the Royal College of Pathologists, said some pathologists were feeling "beleaguered" and called for a change to the current "archaic and ambiguous" law.

"There is an underlying value to doing post-mortems. We want a clear law rather than an unclear law which is what we have got at the moment. We want a clear code of practice.

"We have got a muddled law, we have got sagging morale, everybody in a state of passion.

"Anything that will get us out of this morass will be welcome."