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Today's Date

The Secretary of State for Health

The Secretary of State for Health, Alan Milburn MP, presented the
following speech to the House of Commons earlier today (30/01/01)

"With permission, Mr. Speaker I wish to make a statement about the inquiry into events at Aldey Hey hospital, Liverpool.

The Report is Published

Mr. Speaker I am today publishing the report of the inquiry into the Royal Liverpool Children's NHS Trust, known as the Alder Hey Hospital. I am publishing alongside it two further documents. First, the Chief Medical Officer's Census into the extent of organ retention in the NHS in England. Second, the Chief Medical Officer's recommendations for reform of organ retention procedures. All three documents are now available in the Vote Office.

I am grateful Mr Speaker, for your agreement that the parents affected at Alder Hey should also have access to copies of the report.

I would like to record my thanks to the Chairman of the Alder Hey Inquiry, Mr Michael Redfern QC and his fellow panel members, Dr. Jean Keeling and Mrs. Elizabeth Powell for conducting this difficult inquiry.

About the Inquiry

The inquiry was established in December 1999 following evidence to the Bristol Inquiry that a large number of hearts from deceased children had been retained at hospitals in the NHS.

Alder Hey was one such hospital. It is a world-renowned hospital, treating 200,000 children a year. For many years the hospital has made use of human hearts for research and training. The Redfern Report says that, "there are now more than 1,600 living children who would have died in infancy or childhood without the improvements in surgical techniques and care which were pioneered in Liverpool."

Taken Without Consent

But as the Inquiry report makes perfectly clear, many of these hearts were obtained without consent. According to the report, in addition to over 2,000 children's hearts, there are a large number of brain parts, eyes taken from foetuses, over 1,500 stillbirths of foetuses and perhaps most disturbingly of all, a number of children's heads and bodies.

A Lack of Respect - "pull it to pieces sometime and reject!!

The Redfern Report reveals "a lack of respect and a failure to appreciate the circumstances which led to the taking of human material. For example, the report cites entries about foetal material labelled with the words: 'neck deeply lacerated. Pull it to pieces sometime and reject.'

Some of these entries date back very many years. The number of organs retained by Alder Hey however increased dramatically in the seven years following the appointment by the hospital and by the University of Liverpool of Professor van Velzen in 1988, as Chair of Foetal and Infant Pathology in the Department of Pathology.

Every Organ from Every Child

During van Velzen's time at Alder Hey between 1988 and 1995, he systematically ordered the unethical and illegal stripping of every organ from every child who had had a post-mortem. He ignored parents' wishes even when they told him explicitly that they did not want a full post-mortem, let alone the retention of any of their child's organs.

Lies, Theft and Falsification

According to the Report van Velzen lied to parents. He lied to other doctors. He lied to hospital managers. He stole medical records. He falsified statistics and reports and he encouraged other staff to do the same.

Mr Speaker, for any parent the death of their child is a tragedy. To bury that child, to grieve, to hold precious their memory over the years is how many families gradually come to terms with their loss.

It is hard to imagine then the trauma and anguish which each of the Alder Hey parents faced when, many years later, they discovered that their child's body had not been buried intact as they believed, but had been stripped of their entire internal organs - leaving the body as a shell.

This happened not to one set of parents in Liverpool but to several hundred. The hospital and the university now admit they will never be able accurately to tell parents what happened to every organ of every child between 1988 and 1995.

Research Not Advanced One Iota

What we do now know is that the vast majority of organs that were taken were never used for medical research. Parents cannot even take comfort in the knowledge that their children's organs were used to help other children. It is clear from the Report that the understanding of cot death - for which van Velzen was funded - was not advanced one iota by his practice of stripping organs from the bodies of children.

The question in the minds of parents and of others is how van Velzen got away with it for so long. The answer, Mr Speaker, is that the hospital authorities and the University of Liverpool failed to monitor his practices and failed to take action to stop them. Numerous complaints were made. Problems were not properly investigated. Action was not taken.

Incompetence and Insensitivity

These failures were compounded by the incompetence and insensitivity of both the hospital and university authorities once the truth did begin to emerge. The hospital seemed overwhelmed by events. The university simply turned its back on parents. Some parents faced up to four funerals as different organs from their children were returned to them at different times. The pain caused to the parents by this dreadful sequence of events is unforgivable.

Health Secretary Expresses Sorrow

I am deeply sorry for the wrong that was done to them, their families and their children. Those who did wrong will now be held to account.

GMC Has Summonsed van Velzen

The inquiry report says Professor van Velzen must never be allowed to practise again in this country. I can tell the House today he has been referred to the General Medical Council (GMC) for disciplinary action. I understand he has been summoned to appear before the GMC later this week. I can also tell the House that the inquiry report has been referred to the Merseyside Police and passed to the Director of Public Prosecutions. They will determine whether criminal prosecutions should now proceed.

Four NHS staff - including the current Chief Executive of the Trust - have today been suspended. Their employers will now consider appropriate disciplinary action.

The role of other NHS staff will be examined by their employers. The doctors criticised in the report have been referred to the General Medical Council. Other staff have been referred to the Council for Professions Supplementary to Medicine.

Education Secretary to View Evidence About University

My Right Honourable Friend the Secretary of State for Education and Employment has asked the President of the Council of the University of Liverpool to review the evidence in the report and to take appropriate disciplinary action.

The current acting chairman of the Trust board is today leaving the Trust along with two non-executive Directors whose resignations I have today accepted. I have today appointed Angela Jones as the new chair. It is right that the Trust should have a fresh start.

Dedicated Staff Shocked

Alder Hey Hospital relies on its dedicated staff. They have been as shocked as we all are by these events. I want to thank those staff today who, through these difficult times, have continued to provide treatment and care for children from Liverpool and elsewhere.

The action I have taken today should assist those staff to re-establish the hospital's relationships with the community that it serves. I am confident that Alder Hey can recover and rebuild its reputation as a leading national and international centre for specialist paediatric care.

What the report describes as "the exceptional practice of van Velzen" between 1988 and 1995 made Alder Hey unique. But elsewhere in the NHS it is clear organ retention without relatives' full knowledge and agreement was widespread.

The recent national summit on organ retention organised by the Chief Medical Officer (CMO), Professor Liam Donaldson, confirmed that this was also the experience of parents in many other parts of the country.

Professor Donaldson's census shows that 105,000 organs are retained across the country. Poor standards of cataloguing and record keeping mean that these figures may not be wholly accurate. Twenty-five hospitals account for 88% of these organs.

Coroner's System Ineffective

At least 16,500 organs and tissues have been retained in apparent contravention of the law because they came about as a result of coroners' post-mortems where the organs should not have been kept beyond the time needed to establish the cause of death. As at Alder Hey and Bristol the coroner's system across the country has proved ineffective in this respect.

The current law and post-mortem consent forms are both ambiguous. They talk of taking tissues when in fact they often mean taking organs. They record 'lack of objection' rather than positive consent.

In the last four years the Government has made an unprecedented effort to better protect patients. The changes we have already introduced and the reforms that are still to come enjoy widespread support amongst both patients and doctors. The NHS is full of good doctors, not bad ones. Our reforms are aimed at supporting them to become even better. A new statutory duty on quality on every NHS Trust. Independent inspection through the Commission for Health Improvement. Annual appraisal of doctors linked to period revalidation. Reform to self-regulation to make it faster, more open and more accountable.

Now we need to go further. The CMO Census, the consultation we have had with parents and the medical profession and the reports from Bristol and Alder Hey have formed the basis for Professor Donaldson's recommendations for reform. I am accepting them recommendations in full. The major proposals are as follows:

Big Changes to be Enshrined in Law

First, I am establishing a special commission under the chairmanship of Margot Brazier, Professor of Law at Manchester University, to oversee the return of organs and tissues from around the country to their families should they wish to have them. We have made sure that parents seeking more information today can obtain it by contacting the NHS Direct telephone helpline.

Secondly, my Right Honourable Friend the Home Secretary has set in train a review of the coroner system so that we can learn the lessons of what went wrong at Alder Hey and elsewhere.

Thirdly, my Right Honourable Friend the Secretary of State for Education and Employment will establish a review of the accountability and management arrangements between NHS Trusts and universities where senior staff are employed on joint contracts.

Fourthly, we will ensure that all NHS Trusts provide support and advice to families at the time of bereavement. I expect this to be in place throughout the NHS later this year.

Finally, the law will be changed to enshrine the concept of informed consent. The existing law in this area has become outdated. The 1961 Human Tissue Act does not even contain penalties for breaches of its provisions. The law has ill-served bereaved parents in our country, it causes confusion for staff. It must now be changed.

I will therefore bring forward measures urgently to amend the Act to clarify that informed consent must be given, that organs and tissues must be specified and make it a criminal offence to ignore informed consent.

We will also undertake a wider review of existing laws on all aspects of taking, storing and using tissue and organs from both the living and the dead. When the review is completed we will seek to legislate to bring in the necessary changes.

New Statutory Code of Practice for NHS

These changes in the law will be supported by a new statutory Code of Practice which will be issued to the NHS. It will cover the issue of organs being used by the pharmaceutical industry. The Code of Practice will be accompanied by a new standardised consent form which will be introduced throughout the NHS.

Mr Speaker there is one other important point. Informed consent need not be at the expense of medical research. Proper post-mortem procedures and archived tissues and organs hold the key to much medical advance. Discovering the effects and causes of disease, finding cures for illnesses that disable or kill but retaining public confidence in these procedures requires public consent. Members of the medical profession share this view. Indeed it is reflected in recent guidance issued by the Royal College of Pathologists.

Many Families Would Have Consented to Research

When I met families from Alder Hey, from Bristol and from elsewhere, many told me that had they been asked properly, they would have been only too willing to allow their child's death to help another child live.

Doctors and pathologist have an incredibly difficult job to do. They have usually acted with the best of intentions: to bring about greater understanding of disease and to improve standards of care. And to do so in a way that avoids causing further anguish to grieving families.

These are laudable aims. They are honourable intentions. But as the events at Alder Hey have proven, modern patient expectations and traditional clinical practices have grown apart. The NHS can no long assume that the benefits of science, medicine or research are somehow self-evident regardless of the wishes of patients or their families. The relationship between patients and the service today has to be based on informed consent. That will require changes in practice and changes in policy. It will require changes in medical education. As I have made clear today, it will also require changes to the law.

Parents with Great Dignity and Purpose

Mr Speaker, the parents I have met from Alder Hey and elsewhere have acted with great dignity and purpose. I pay tribute to them today. I hope that the reforms that we will now make will provide some comfort for the pain they have endured.

I commend the reforms to the House".

ENDS.

 

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