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Last Updated: Wednesday, 20 April, 2005, 11:51 GMT 12:51 UK
Living with organ scandal legacy
By Michelle Roberts
BBC News health reporter

Funeral of 50 unknown babies whose bodies were secretly stored for medical research
Alder Hey has overhauled its bereavement care
Nearly six years since the discovery that dead children's organs had been kept without their families' knowledge, Liverpool's Alder Hey hospital is working hard to move on.

Walking into the formidable Victorian building, there is a clear reminder of the hospital's darker past.

A plaque in the lobby, dedicated to the babies and children whose organs were retained, clearly shows that it is trying to live with and move on from, rather than forget, the tragic events that came to light in 1999.

Alder Hey was not the only hospital that retained organs without consent.

Eye of the storm

But it was the one that made the most headlines, its current Chief Executive Tony Bell said.

Mr Bell, who is also a trained nurse, was appointed to the position after his predecessor, Hilary Rowland, was dismissed in 2001 over her role in the organ retention scandal.

Many of the staff felt victims
Alder Hey's Chief Executive Tony Bell

He said accepting the post at the height of the organ scandal was like being in the eye of a storm.

"It was very difficult. It was an organisation in shock really."

He said an immediate priority was to get a grip on what the situation in terms of how many organs had been retained, where were they stored and who knew what.

"It was difficult for the trust to accept that, according to the Chief Medical Officer, we had retained about 10% of the country's retained organs. We had some 4,000 organs.

"But what we incurred was 90% of the media attention and the legacy in history of the Alder Hey scandal."

Never again

The other huge task was to re-establishing trust with the public and staff through better communication, said Mr Bell.

"Many of the staff felt victims - victims of public anger and victims of probably poor communication internally and victims in their own community at times."

It's about sensitivity, respect and dignity
Brain Langrick, Bereavement Care Services Manager at Alder Hey

He said the team at Alder Hey had been working hard to rebuild parents' confidence by delivering a high standard of care and implementing changes to ensure the same thing could not happen again.

The hospital has been working with bereaved parents, including parents whose children's organs had been taken without consent, to change the way hospitals around the country deal with such difficult issues at emotional times.

They have developed measures to ensure that both the bereaved families and staff get the information and support they need at any time of the day.

The changes

Over 100 Trusts have followed Alder Hey's example and are implementing similar services in their own hospitals. Alder Hey also runs workshops to advise other hospitals.

Mr Bell said that it took an independent inquiry, which published its report in 2001, to trigger change at a national level.

In addition, the Human Tissue Bill says consent is required from a patient's will, or their family, for tissues and whole organs to be removed and retained after they die.

Alder Hey plaque
The plaque, displayed in the hospital as a constant reminder, reads:

"This plaque is dedicated to the memory of children and pre-viable babies who died and from whom organs were wrongly retained in former times. This dedication acknowledges the role of parents in bringing about appropriate change."

Mr Bell said: "What also came out of the inquiry was that people did not understand the purpose of pathology, which is to predict the future.

"Its about trying to prevent disease and improve treatments and cures.

"No one ever thought that a practice that was only intended for good could be so either misunderstood or abused."

Alder Hey no longer keeps tissues from deceased children.

Parents are also always asked whether they will agree to a post-mortem examination if one is thought to be needed.

The exception to this is when a post-mortem has to be carried out to establish the cause of death.

Alder Hey has a new mortuary and a bereavement suite where families can say goodbye to their deceased loved-ones in private surroundings rather than on a busy hospital ward.

Brain Langrick, Bereavement Care Services Manager for the hospital, said: "It's about sensitivity, respect and dignity, not only for the family, but also for the child that has died.

"We try to encourage families to come down with their child from the ward, and given them the choice of carrying their child or baby in here themselves.

"They can dress them in their favourite clothes and put them into a crib, cot or a bed so the whole family can come in and say goodbye.

"We look after them every step of the way. And it doesn't stop once they have left here. We stay in touch if they want us to.

"One mother contacted us after a year and wanted to speak with the doctors who had cared for her child. We could arrange that."

He said all staff, from consultants to porters, now received bereavement training.

"That means everybody knows what they should be doing and what services are available. It ensures continuity of care. It's about providing the best care in the worst of times."

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05 Aug 04 |  Merseyside

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