§ The Secretary of State for Health (Mr. Alan Milburn)
I wish to make a statement about the inquiry into events at Alder Hey hospital, Liverpool.
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. Secondly, 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 what has proved to be an extremely difficult 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 teaching. The Redfern Report says: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.As the inquiry report makes perfectly clear, however, many of those 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 or foetuses and, perhaps most disturbingly of all, a number of children's heads and bodies. The Redfern report revealsa 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 some time and reject.Some of those entries date back very many years. However, the number of organs retained by Alder Hey increased dramatically in the seven years following the appointment by the hospital and the university of Liverpool of Professor van Velzen in 1988 as chair of foetal and infant pathology in the department of pathology.
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 parent's 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.
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.
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 the trauma and 176 anguish that 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 its entire internal organs, leaving the body as a shell.
That happened not to one set of parents in Liverpool, but to several hundred. The hospital and the university now admit that they will never be able accurately to tell parents what happened to every organ of every child between 1988 and 1995.
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 others is how van Velzen got away with it for so long. The answer 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.
These failures were compounded by the incompetence and the insensitivity of both the hospital and the university authorities, once the truth did begin to emerge. The hospital seemed overwhelmed by events. The university seemed simply to have 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, in my view, unforgivable. 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.
The inquiry report says that Professor van Velzen must never be allowed to practise again in this country. I can tell the House today that he has been referred to the General Medical Council for disciplinary action. I understand that 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 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.
My right hon. 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. Also today, I have appointed Angela Jones as the new chair. It is right that the trust should have a fresh start.
Alder Hey hospital relies on its dedicated staff, who have been as shocked as we all are by these events. I want to thank those staff, who have continued through these 177 difficult times to provide treatment and care for children from Liverpool and elsewhere. The action that I have taken today should help them 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 asthe exceptional practice of van Velzenbetween 1988 and 1995 made Alder Hey unique. However, elsewhere in the NHS it is clear that organ retention without relatives' full knowledge and agreement was widespread. The recent national summit on organ retention, which was organised by the chief medical officer, Professor Liam Donaldson, confirmed that that was also the experience of parents in many other parts of the country.
Professor Donaldson's census shows that 105,000 organs are retained throughout the country. Poor standards of cataloguing and record keeping mean that those figures may not be wholly accurate. Twenty-five hospitals account for 88 per cent. of the organs. At least 16,500 of the organs and tissues have been retained in apparent contravention of the law, as they were used for coroners' post-mortems and should not have been kept beyond the time needed to establish cause of death. As at Alder Hey and Bristol, the coroner system throughout the country has proved ineffective in that respect. The current law and post-mortem consent forms are both ambiguous. They talk of taking tissues when they often mean taking organs and they record lack of objection rather than informed consent.
In the past four years, the Government have made an unprecedented effort to protect patients better. The changes that we have already made and the reforms that are still to be introduced enjoy widespread support among 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. They include a new statutory duty on quality for every NHS trust, independent inspection through the Commission for Health Improvement, annual appraisal of doctors that is linked to periodic revalidation, and reform to make self-regulation faster, more open and more accountable.
Now we need to go further. The chief medical officer's census, our consultation 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 in full. The major proposals are as follows. First, I am establishing a special commission under the chairmanship of Margot Brazier, professor of law at Manchester university, to oversee the return to families of organs and tissues from around the country, should those families wish to have them. We have ensured that parents who are seeking more information today can obtain it by contacting the NHS Direct telephone helpline.
Secondly, my right hon. 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 hon. Friend the Secretary of State for Education and Employment will establish a review of the accountability and management arrangements between 178 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 that arrangement 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 Human Tissue Act 1961 does not even contain penalties for breaches of its provisions. The law has ill served bereaved parents in our country and 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 to 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 introduce the necessary changes.
The changes in the law will be supported by a new statutory code of practice, which will be issued to the national health service. It will cover organs that are used by the pharmaceutical industry, and it will be accompanied by a new standardised consent form, which will be introduced throughout the health service.
There is one other important point. Informed consent does not need to be at the expense of medical research. Proper post-mortem procedures and archived tissues and organs hold the key to many medical advances, such as discovering the effects and causes of disease, and finding cures for illnesses that disable or kill. However, retaining public confidence in those procedures requires public consent. Members of the medical profession share that view. Indeed, it is reflected in the recent guidance issued by the Royal College of Pathologists.
When I met families from Alder Hey, Bristol and elsewhere, many told me that if they had been asked properly, they would have been only too willing to allow their child's death to help another child live.
Doctors and pathologists have an incredibly difficult job. They have usually acted with the best intentions to create greater understanding of disease and to improve standards of care in a way that avoids causing further anguish to grieving families. Those are laudable aims and honourable intentions. However, as the events at Alder Hey show, modern patient expectations and traditional clinical practices have grown apart. The national health service can no longer 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, policy and medical education. As I have made clear today, it will also require changes in the law.
The parents whom I have met from Alder Hey and elsewhere have acted with great dignity and purpose. I pay tribute to them. I hope that our reforms will provide some comfort for the pain that they have endured. I commend the reforms to the House.
§ Dr. Liam Fox (Woodspring)
I am grateful to the Secretary of State for his statement and for his courtesy 179 in making it available to the Opposition in advance. As he said, the inquiry came about as a result of the Bristol inquiry, which took in many parents in my area. Our thoughts are with them today, because the publication of the report will reawaken many painful memories.
I am grateful to the Secretary of State for the balanced way in which he presented his statement, because there is a need for perspective. Nothing would be worse than blowing up the tragedy and thus creating a general climate of fear and anxiety. That would only make more difficult the complex but necessary work of those engaged in the research from which we may all ultimately benefit. The work is necessarily gruesome and we need to maintain a sense of realism about it. I am therefore grateful for the tone of the statement.
I want to concentrate on two specific issues. The first relates to Professor van Velzen and the second to the wider use of retained tissues and organs. It is clear from the statement and the report that Professor van Velzen lied and broke the law. He must answer for that. Is he being investigated elsewhere for similar reasons? If so, is that happening in the United Kingdom or another country? Our regulations must ensure that no doctor guilty of a disciplinary breach can work in the United Kingdom. It should be a statutory duty for doctors to report to their employers, as a matter of routine, any disciplinary investigation that is being carried out into their work in this country or any other country.
The Secretary of State said that the question in the minds of parents and others was that of how Professor van Velzen had got away with his activities for so long. I would add that a question in the minds of most decent people would be, "Why did he do it?" Most of us completely fail to understand the thought processes or motives of such a man.
The taking of organs or tissue, even with consent, should be accompanied by a clear explanation of the purpose for which they are being taken. I hope that the Secretary of State will include such a provision in his proposed legislative change. The Opposition would fully support such a change in the law. We must also question the role of the universities, which should maintain a proper supervisory brief over those whom they appoint to positions as sensitive as the one held by Professor van Velzen.
The Secretary of State is right to say that it is essential that neither the report nor any exchanges in the House should affect the reputation of Alder Hey hospital or its staff, who carry out dedicated, quality work for which they deserve thanks and praise.
Turning to the wider picture, we fully agree with the concept of informed consent. As the Secretary of State said, most parents would agree, if asked, to allow tissue and organs to be used in research for the benefit of others. Some, of course, would not. In that sense, the special commission under Margot Brazier will have a difficult task that will call for great sensitivity.
It is essential that when parents want organs returned, the organs should be returned all at one time, and not on a number of occasions. We must also accept that some parents will not want organs returned, and that some will not even want to know about the retention of the organs of their children, as that could reopen many painful emotional wounds for them. Their views must be respected.
180 I welcome the proposed review of the coroner system, especially after the Shipman case, which raised even more questions about the system's operation. I also welcome the proposed code of conduct for the pharmaceutical industry, but I suggest to the Secretary of State that it should go further and cover all third parties to whom organs or tissues may be given, especially if money is to change hands. That should apply whether the third parties work inside or outside the national health service.
We fully agree with the need to reform the Human Tissue Act 1961, and I ask the Secretary of State to consider, first, what parallels there might be with the way that tissues are dealt with when individuals donate their bodies for anatomical dissection for medical education purposes, and secondly, whether those rules also need to be amended.
The Opposition will give every support to any legislative change that the Government intend to introduce. If the Government can achieve those changes by means of the Health and Social Care Bill currently passing through Parliament, they would have every support from the Opposition for its speedy passage. It would be ridiculous for both the main parties to approach a general election promising the same changes to legislation, when we could bring about that legislative change imminently.
This matter concerns treating the living and the dead with dignity and respect. We welcome and encourage research—including that involving the use of organs and tissue from the deceased—because we can all gain from it. However, we all lose if such research is not carried out in a climate of decency and respect.
§ Mr. Milburn
I am extremely grateful to the hon. Member for Woodspring (Dr. Fox) for the tone and content of his speech.
On his specific question about Professor van Velzen, the House is probably aware that van Velzen is under investigation in Canada for his activities there. There is evidence that medical records were taken from this country and that they ended up in Canada. There is also evidence that van Velzen retained animal and human organs, which he stored in a furniture container in Canada. The Canadian authorities are currently investigating that case, and a copy of the report will be passed not only to the regulatory bodies in this country but to the medical regulatory bodies in Canada, Holland and other European Union countries.
The hon. Gentleman talked about the need to ensure clear explanations of post-mortem procedures, and of the real scientific and medical benefits of being able to conduct research on organs and tissue. That is important, and we all have a job of work to do in that regard. We must ensure that the public—particularly relatives faced with horrendous decisions soon after a loved one has died—are better informed of what a post-mortem entails and of what the advantages and disadvantages are. There is a job of public education that we will need to undertake. As I said in my statement, there is also a job of work to do to ensure that medical training procedures and systems are changed.
On the return of organs, it is extremely important that the commission—which, incidentally, is operating in shadow form and will come into full being in April with, I hope, the agreement of the House—learn the lessons of 181 the mishandling of events at Alder Hey over recent years. We cannot have parents and relatives facing multiple funerals as a consequence of organs being returned in the way they were.
The hon. Gentleman also made another important point. People have a right to know, should they want to take up that right, whether organs have been retained. They also have a right not to know. The commission must enshrine that principle. I am grateful for the hon. Gentleman's offer of support, but, on the feasibility of amending the Health and Social Care Bill, I am advised—we have checked this—that it is not possible to use the Bill to achieve the legislative changes that we want to make to the Human Tissue Act 1961. As soon as possible, however, we shall seek another legislative opportunity to do precisely that.
§ Mr. Frank Field (Birkenhead)
Will the Secretary of State allow me to express a couple of views that families on the Wirral have asked me to put forward? First, they stress that parents who lose their children never get over it; the best they can do is live with it. The events that my right hon. Friend described make it much more difficult for them to live with the death of their children as other parents might. Secondly, they do not want to appear to be luddites. They are not against research, but when research might be carried out, they are anxious that parents should be key players in deciding whether it should proceed, so I am sure that they will draw great satisfaction from my right hon. Friend's statement that he intends that parents should not only be involved, but should be the key decision makers.
§ Mr. Milburn
I am extremely grateful to my right hon. Friend for those remarks. He is right. In my dealings with the Pity II organisation, which represents some Alder Hey parents, and the National Committee on Organ Retention, which represents parents throughout the country who have faced such a situation, I have been most impressed by how movingly they say that, had they been given the opportunity, they would of course gladly have donated their child's organs to help another child. Some would not, however, which is the important point. Donation has to be based on the consent of the parent or the relative. Tragically in this case, the opportunity to give or withhold consent was never offered to the parents at Alder Hey.
§ Mr. Nick Harvey (North Devon)
The Secretary of State will be aware that I have been involved in this issue for some time—since parents in my constituency discovered that their children had been victims at Bristol. My constituent Mrs. Michaela Willis became the national chair of the organisation representing parents. On behalf of them all, I thank the right hon. Gentleman for his statement, his blunt acknowledgement of the seriousness of these problems, and his apology on behalf of the NHS for the great wrong that has been done and the grief felt as a result of it. That represents a marked contrast with the reaction of hospital authorities when questions were first asked.
The Secretary of State rightly condemned a particular individual, but how widespread has such practice been throughout the country? By today's standards, would we not consider the typical attitude to be arrogance belonging to a different era, not to a modern health service that treats 182 informed patients? I express my appreciation of the fact that both today's reports pull no punches and I welcome the specific proposed changes, including to the law. Although they are significant, it is probably even more important that they should not be rushed.
On two specific points, I urge the Secretary of State to consider whether Professor Brazier's commission ought to be more permanent than he implied and whether an independent body should specifically be charged with on-going consideration of all such issues rather than examining problems that have arisen in the past.
Secondly, if we are to expect doctors—as I am sure we are—to sit down and spend far more time patiently going through the benefits and the issues with parents and other relatives, that will obviously have considerable resource implications. Will there be someone with expertise in each hospital? There is no doubt that if these matters are handled correctly, in the vast majority of cases parents will see the benefits and will want to feel that something can be learned from the deaths of their children.
§ Mr. Milburn
I join the hon. Gentleman in paying tribute to Mrs. Willis and all the work done by her national committee. I have had the pleasure of meeting her and her fellow committee members, and she and others have helped to contribute to the chief medical officer's recommendations which I announced to the House today.
The hon. Gentleman is broadly right in what he says about practices generally. Practices that might have been considered acceptable in the 1950s or 1960s are not considered acceptable nowadays, for the simple reason that we live in a very different era. Public and patient expectations are very different. Systems, ways of working and, I think, the whole culture of the health service have lagged behind; it needs to catch up, and it needs to catch up quickly.
I think that we should be optimistic. Discussions with the medical profession—whether with the British Medical Association, which welcomes some of the changes that we seek, or the Royal College of Pathologists—have shown an enormous willingness on the profession's part to adapt to the new environment in which we all find ourselves. In many ways, doctors in some parts of the country have been leading the changes, and I pay tribute to them. We must build on that, and ensure that the appalling practices that took place at Alder Hey are not repeated.
I will gladly consider the basis for the commission. We need to think about that. I think it right for the commission to be given a specific job to do in the first place—and it will be an extremely difficult job: make no mistake about it. We shall then need to think about whether the commission should continue in a permanent form thereafter.
Some trusts—well over half, I believe—already provide specialist bereavement advisers. We need to ensure that in the future not just some but all trusts take the issue extremely seriously.
§ Mr. Robert N. Wareing (Liverpool, West Derby)
I understand that at present no criminal sanctions can be used against those who have perpetrated what most of us would regard as crimes. Would my right hon. Friend ensure that any legislation that is introduced—before the 183 general election, I hope—will make it unlawful, indeed a criminal offence, either to possess or to dispose of a human body or its parts?
How does my right hon. Friend think that the injustices done to bereaved parents can be addressed? Is his Department floating any ideas for a compensation scheme? May I impress the urgency on him? Often, in cases of emergency, the House has managed to pass legislation in a single day when there has been no opposition. I urge my right hon. Friend to consider the possibility of passing legislation before the election.
§ Mr. Milburn
In regard to urgent legislation, we shall certainly discuss with the Opposition parties, through the usual channels, how best we can make rapid progress. I take the point made by the hon. Member for North Devon (Mr. Harvey) that it is important for us to get these things right, but there is clearly great urgency in this case.
What my hon. Friend said about criminal sanctions is absolutely right. I understand that, under the Human Tissue Act, the coroner's rules of 1984 and the Coroners Act 1988, although the taking of human tissue or organs is illegal, we have no criminal sanctions. That gap in the law must now be filled, and we shall present proposals in both the short and, as I have said, the medium term to correct those deficiencies.
On the two occasions on which I met parents in my office—and indeed last night, when I spoke to Mr. Ed Bradley, who is the chairman of the Pity II Group of parents—the compensation issue generally was not raised. People will have different views on the issue. Some parents will feel very strongly about it, whereas others will not. However, I think that there is consensus on what the parents really want. They want an apology and an explanation and to know that those who are responsible for what happened to them and their families will be brought to book. Above all, they want to know that it will not happen again, and that action will be taken quickly to prevent it from happening again. We are committed to taking that action.
§ Mr. David Wilshire (Spelthorne)
I am grateful for the chance to contribute because the death of my young daughter some years ago makes me feel very involved in this particular issue.
Although I understand the Secretary of State's anger, may I ask him to reflect on three matters? I should like, first, to underline a point that has already been made. Probably because I am a coward at heart, I do not want someone knocking at my door to discuss parts of my daughter. I simply do not want wounds to be reopened.
Secondly, will the Secretary of State keep in mind the difference between the use of parts of a dead child and the way in which they are obtained? In the anguish of the moment, I forgot to ask whether any parts of my daughter could be used to help others. I can only say that I wish that someone had asked me.
Thirdly, will the Secretary of State think very carefully about the compensation issue? The bottom line is that the only thing that every bereaved parent really wants is his or her child back. To maintain one's sanity, one has to accept that that cannot be. I speak with some feeling when I say that the pursuit of compensation can all too easily prolong the grief.
§ Mr. Milburn
I am extremely grateful to the hon. Gentleman for his comments. He understands these issues 184 better than most of us because he has faced precisely the type of situation we are discussing. I give him a very clear assurance that we will not have the situation that we had at Alder Hey, where hospital authorities were ringing up parents out of the blue to inform them that they had found yet another organ from their child. We will not have that.
As I said to the hon. Member for Woodspring (Dr. Fox), parents absolutely have a right to know, if that is what they want. Equally, they have a right not to know. We have to respect the views of the individual parent. I certainly intend that the commission should operate in such a manner that it enshrines respect for parents and for relatives as I have described, precisely to avoid the type of situation that we had at Alder Hey not only once, but, sadly, on very many occasions.
§ Mr. Peter Kilfoyle (Liverpool, Walton)
Not only as a Liverpool MP, but, more important, as the uncle of one of the mothers who has been traumatised by these events, may I tell my right hon. Friend how welcome his statement has been—not only for the openness of his account and the range of his conclusions; but for the expedition with which he is seeking to implement the necessary action? In the course of his inquiries, has he been given any reason to be concerned about allegations that the hospital sold live tissue to pharmaceutical companies? If so, could he elaborate on that?
§ Mr. Milburn
I am grateful to my hon. Friend for his comments. On the issue of the sale of organs taken from live children at Alder Hey, it is our understanding that there was such a practice at the hospital in the early 1990s. We suspect that there was such a practice also at other hospitals across the country. Thymus glands were taken without the consent of parents and handed to a particular pharmaceutical company, to produce drugs that help to avoid the rejection of transplanted organs. It therefore clearly had medical and clinical benefits, but the central issue for the House and for parents is that the organs were sold without consent.
In my view, the principle and issue of consent must come first. I assure my hon. Friend that we will issue very clear guidance to the national health service about the matter, and the statutory code of practice that I mentioned in my statement will cover precisely the set of circumstances that he described.
§ Mr. Tim Boswell (Daventry)
The Secretary of State's emphasis on informed consent is entirely welcome, but will he accept that it is likely to require NHS hospital trusts to invest a great deal of time and effort in handling individual cases sensitively? Will he give attention to two particular matters? First, if a mother is recovering from a difficult confinement or emergency procedures, will he ensure that no consent is sought from her at that time? Secondly, would it not be highly desirable if both parents involved had to give consent jointly and subscribe to it together? I recognise that it may be difficult to make that a legal requirement, but it would remove any question of subsequent recrimination.
§ Mr. Milburn
In respect of matters of timing and pressure on hospitals, it is true that changes in practice will be needed. Many hospitals have changed their practice, and the chief medical officer issued interim guidance to the national health service in March last year 185 on some of these issues. I am pleased to say that it has produced some changes and improvements, and has led to issues such as this being handled more sensitively in many parts of the NHS—although, sadly, not in all parts. It is true that there will be challenges in that regard.
The NHS faces a choice. We can go on as before, pretending that we can live in the previous century; or we can bring practices up to date, so that they are more relevant for this century. That is no choice at all: the national health service has to change.
On the specific issue of consent, there are profoundly difficult issues that we must get right. That is why the code of practice will involve consultation—with the medical profession, parents' organisations and bereaved parents—so that we can get right the practicalities of informed consent, and avoid some of the problems that the hon. Gentleman described.
§ Mr. Eddie O'Hara (Knowsley, South)
I, too, thank my right hon. Friend for the openness and feeling with which he confronted the issues in the awful report that has been presented to us. Will he say whether Professor van Velzen, as distinct from the hospital, is being investigated over the sale of organs? The professor has damaged the high and hard-earned reputation of a fine hospital. Will my right hon. Friend assure people on Merseyside that he will give special support to Alder Hey hospital to help it win back its reputation?
The parents are the ones who have suffered most. Will my right hon. Friend consider carefully the question of compensation, and respect the parents' wishes? Will he bear in mind also that a number of parents have incurred great expense, on top of the grief that they have suffered? Finally, will he assure me that they will receive a personal apology—as distinct from an impersonal apology—for all that they have suffered?
§ Mr. Milburn
On the latter point, my hon. Friend is right. He is as aware as I am that the events described by the Redfern report could not have been handled in a more insensitive fashion. What happened, and how it was handled subsequently, could not have been more appalling. We must learn from that.
I am not aware that van Velzen was implicated in the sale of organs. He may well have been; that is something which we will have to ascertain.
Let me repeat what I said earlier about Alder Hey. It is a fine hospital, staffed by fine people. The doctors, nurses and others who work there have been through thick and thin over the past few years. Yes, they will need specialist support. Strenuous efforts will have to be made by the community and the hospital authorities to rebuild the bond of trust which I know so many people in the hospital are desperate to do. I hope that, before too long, I will be able to visit the hospital and meet some of the parents to discuss these issues.
§ Mr. Ronnie Fearn (Southport)
Bereaved parents in my constituency of Southport on Merseyside were probably the first to ring the bells about Alder Hey. They were not necessarily alarm bells but they certainly brought the matter to the attention of the House.
186 What is happening with consent forms? The old ones are still being signed. Is the consent form to be changed immediately, and what will happen thereafter? Can the word "disposal" please be explained? It could mean that the hospital, or Liverpool university—which is not blameless by a long way—could dispose of organs by sale. They are saying that the disposal was not by way of a sale but had a "transaction fee" attached. Does the right hon. Gentleman go along with that?
§ Mr. Milburn
It is true that there are many different consent forms within the national health service. Myriad advice is available from a host of organisations such as the Child Bereavement Trust, the Royal College of Pathologists and, indeed, the Department of Health. My view, which is also the recommendation of the chief medical officer, is that we must end that nonsense. We must have a single, standardised consent form, used in all parts of the national health service, so that parents, relatives and patients know what their rights are. We will consult on that; we need to get it right and ensure that the new consent form does not replicate some of the disadvantages of previous consent forms. That is precisely what we are committed to doing, and we will try to do it as quickly as possibly. However, as the events at Alder Hey have shown, sometimes when things are rushed, people get them wrong. I am determined that we learn the lessons from that and get the consent form right.
As for the disposal of organs, particularly the selling of organs, we need to look at the issue in detail. We need to ascertain the facts. We will enshrine in the code of practice precisely the arrangements that the national health service needs to undertake in the future.
§ Mr. David Hinchliffe (Wakefield)
This is a truly awful situation, with echoes of the grave robberies of the 19th century. Listening to my right hon. Friend's statement, I was struck by the fact that the commercial pressure to sell organs needs to be looked at. Does the report contain any reference to the pressure on hospitals to generate income at a local level?
In looking at where we go from here, in particular at the reforms now going through the House and the emphasis on the role of the patient, is it possible to bring forward proposals to involve patients at a local level in the ethical decisions that are made in this context?
§ Mr. Milburn
When these events were taking place at Alder Hey it was, as the report makes clear, a time of huge change in the national health service. The internal market was being introduced into the health service, although I do not particularly want to go into that today because I do not think it appropriate. However, there were very real financial pressures, and from the outset questions were raised over the way in which van Velzen was appointed and whether appropriate funding had been made available for his post and his department. That is what the report states—clearly we must learn from that too.
Apart from the specific changes that we have to make in response to the report and to other evidence, we need to effect a wider set of changes in the NHS. Although they are extremely simple on one level, they are extremely complex on another. We need to ensure that our interests—those of the people who use the service; namely, the patients—always come first. It is the vested 187 interest of the patient that counts. That means that, in future, some of the decisions that used to be made behind closed doors must be brought out into the open.
I believe profoundly that some of our proposed changes—for example, the appointment of patients to trust boards and patients forums, with patients on the spot in the hospital—will make a profound difference.
§ Mr. Ian Bruce (South Dorset)
I thank the Secretary of State for the way he dealt with the statement. One of the new facts that emerged is the information about the number of hospitals that are holding organs. I realise that the right hon. Gentleman must be in a dilemma; tomorrow, the newspapers and the media will try to find out which hospitals are involved. Clearly, on the one hand, the sooner we can give that information, the better—at least perhaps people will know that their hospital did not retain organs. However, on the other hand, hospitals will have to be ready to provide the information. Will the Secretary of State help the House by telling us how that will be handled? He might also help the media, by asking them to be careful how they deal with the matter.
§ Mr. Milburn
I am grateful to the hon. Gentleman for his remarks. Yes, those are real dilemmas—we should be clear about that. I believe profoundly in one important principle—it is a question that I, as Secretary of State, and all my colleagues have to be able to answer: in the end, does the patient have the right to know? The answer must be yes. However, that brings downsides as well as upsides. Risks are attached to that principle—not least because, sometimes, the information is not handled as responsibly as it should be. In this case, we should put the information into the public domain and that is precisely what we will do.
§ Maria Eagle (Liverpool, Garston)
I thank my right hon. Friend for his steadfast determination from the beginning to ensure that the full truth of what happened at Alder Hey hospital was published. I also thank him for his acknowledgement that the Royal Liverpool children's hospital is a fine one, staffed by many dedicated employees, who have had a difficult time during this period. Every day, the hospital saves and improves the lives of children and it will continue to do so.
For 15 months, many of my constituents from bereaved families have been trying to get at the full truth of what happened to their child. How long will it be before we can tell those families that they have the fullest possible information—even if it is incomplete? How long before we can say, "That's it, you know everything that there is to know"?
§ Mr. Milburn
I am very grateful to my hon. Friend for the role that she has played both in liaising with the parents and in supporting those who were working at the hospital through extremely difficult times. In some ways, we shall never know the full truth about what happened at Alder Hey. Certainly, the lack of accurate records and the appalling record keeping mean that some parents will never know the truth about what happened to their child—I regret that deeply, but, sadly, little can be done about it now.
The Redfern report offers the best insight that we can have into what actually happened and into the number of children and other people who were affected. However, 188 I hesitate to say that that is the end of the story. Every time that I think we have reached the end of the story of Alder Hey, a new piece of information comes into the public domain—as we saw on Friday, in respect of the issue raised by my hon. Friend the Member for Liverpool, Walton (Mr. Kilfoyle) on thymus glands. The work of Michael Redfern and his panel has given us as comprehensive a picture of what happened at Alder Hey and of the subsequent events as we are likely to get.
§ Rev. Martin Smyth (Belfast, South)
I join others in thanking the Secretary of State for his frankness. He mentioned that other hospitals were involved. Although the report dealt specifically with England and Wales, I am aware of the situation in Northern Ireland. Is the right hon. Gentleman consulting Ministers in the devolved regions to ensure that the same regulations are carried through?
Earlier, the Secretary of State referred to coroners courts. It is my understanding that consent is not needed for a coroners court order, so, as we have discovered, the coroners court has failed actively to uphold its own legal system. Therefore, how do we encourage those in executive positions—whether medical practitioners or administrative staff—to be less concerned about defending the record of the institutions and to come clean when there are faults in them? May I press the Secretary of State at least to communicate with the World Health Organisation about the introduction of a world health regime in which those with black records cannot move from one country to another, which happened so often in the last century?
§ Mr. Milburn
I am grateful to the hon. Gentleman for his remarks. Indeed, I agree with many of them. As he rightly says, the chief medical officer's report does not apply to Northern Ireland, but discussions with colleagues in Northern Ireland on how best to make progress will be necessary.
The hon. Gentleman is right to say that coroners' post-mortems do not require consent, for the good reason that they take place in cases involving unusual circumstances—perhaps murder or death during surgery. However, it is now painfully clear that the coroners rules have not been applied as they should have been; they have been broken. For example, hospitals have no right to retain organs beyond the point necessary to establish the cause of death, yet that has happened.
As the Alder Hey report makes graphically clear, there will be patients who have been promised a decent burial for their children when the investigation has taken place, but that has not happened. We must learn the lessons of those events. We must therefore review not just hospital post-mortem procedures, but how the coroner system operates in tandem.
§ Mrs. Louise Ellman (Liverpool, Riverside)
I thank the Secretary of State for commissioning these very important reports and for his clear commitment to change. Has he any further information on how the parents and their families will be helped to cope with new and traumatic information? What progress has he made in improving accountability at Alder Hey hospital itself and at the university?
§ Mr. Milburn
Accountability issues have to be addressed not only in the NHS, but in the education 189 system. Inevitably, many colleagues' questions have dwelt on the role of the Royal Liverpool Children's NHS trust, but the university of Liverpool authorities need to answer some profound questions, and the NHS and higher education will need to answer some joint questions, too.
We have tried to make support available today for those parents who wish to read the report and to ensure that counselling, and so on, is available. I believe that if a properly informed consent regime is to operate in all parts of the NHS, it will be necessary for hospitals throughout the country to invest appropriately in bereavement services. Some do, some do not; but all will have to in future.
§ Mr. David Watts (St. Helens, North)
Does my right hon. Friend agree that two parties are responsible for this tragedy—the hospital trust and the university? Given that he has described how he will hold the health service accountable today, is it the intention that the Secretary of State for Education and Employment will make a further statement to deal with the other issues that have arisen?
§ Mr. Milburn
No, it is not—at least, not so far as I am aware—but I have held discussions with my right hon. Friend the Secretary of State for Education and Employment, and I can assure my hon. Friend that he and my right hon. Friend the Home Secretary—who is responsible for the coroner system—take very seriously indeed the fault lines that have appeared not just in the NHS, but in the coroner system and, indeed, the university system in relation to Alder Hey.
§ Mrs. Joan Humble (Blackpool, North and Fleetwood)
May I reinforce the point that was made earlier about information being passed to parents? On Friday, I was approached by two parents who had lost baby girls in the early 1980s. They have not yet received a reply to a letter sent in July last year asking for information about what had happened to their babies. They know that organs disappeared, but they do not know what, they do not know why and they do not know how. Will my right hon. Friend please ensure that those parents who are still waiting—some others have waited for as long as my constituents—get some form of reply? It might not be in the detail that they want, but they deserve at least the courtesy of being given some information.
§ Mr. Milburn
I very much agree with that sentiment. I shall certainly take what steps I can to ensure that those parents receive information. People should not wait that long; they should receive replies. As my hon. Friend will be aware, the information has not always been available in the way it should have been, so the authorities have not been able to reply to parents in the way they should have done. However, I hope that the advent of the new commission will help to cut through some of that bureaucracy and to provide a streamlined system so that parents and other relatives receive the information that they require.
§ Mr. Ivan Lewis (Bury, South)
I congratulate my right hon. Friend on the way he is bringing this tragic and scandalous cover-up to some kind of conclusion. I know that several of my constituents have been victims of the Alder Hey case and they will be grateful for the apology 190 that he has made today on behalf of the national health service and, more important, for my right hon. Friend's determination that similar events should never happen again.
Is my right hon. Friend aware of the case of my constituent Mrs. Elaine Isaacs, who, 12 years after the tragic suicide of her husband, Cyril, by chance discovered that his brain had been retained without the consent of the family? That fact was confirmed by a message left on her answering machine by a doctor. Will my right hon. Friend assure me that he will insist that that case is investigated thoroughly and that the whole issue of the retention of brains in cases where the cause of death may have been related to mental illness will be considered specifically? Many fear that what happened in this case has been common practice in the NHS for many years.
§ Mr. Milburn
I am extremely grateful to my hon. Friend for his kind remarks. I will look into the specific case that he mentioned. He is right to suggest that it has broader implications, and we have to ensure that the new informed consent regime applies across the piece. It should apply not only to the relatives of children, but to the relatives of adults who suffered from mental or physical illness. Over the next few weeks and months, there will be an opportunity to explore how best we can put in place an informed consent regime that will apply to all parts of the national health service.
§ Mrs. Ann Cryer (Keighley)
This morning I had a meeting with a representative of the National Kidney Research Fund. Both he and I are a bit concerned that the Alder Hey findings could have a negative impact on the donation of organs. According to my colleague, the shortage of kidneys already means that 5,000 would-be recipients, many of them children, wait an average of nine years for a kidney transplant. Does my right hon. Friend agree that the media could play a positive role by encouraging the carrying of organ donor cards at all times, particularly in our ethnic minority communities where the shortage of organs is even more acute than among the rest of the population?
§ Mr. Milburn
I am very grateful to my hon. Friend for her extremely sensible remarks. It is important that the results of the Alder Hey case do not have an adverse impact on organ donation. My hon. Friend is right to say that we face a shortage of organs, and there are a variety of reasons for that—some good and some bad. The fact that there are fewer road traffic accidents and the great advances in neurosurgery in recent years mean that we do not have the number or quality of organs that are required for transplant purposes.
A vigorous campaign is encouraging more and more people to carry organ donor cards, and many people—about 8 million or about 14 per cent. of the population—already do. My hon. Friend conveys an important message, and I hope that those who cover these events will act responsibly and ensure that the messages that are imparted to the public do not do lasting damage to the number of organ donations.
§ Dr. Lynne Jones (Birmingham, Selly Oak)
My right hon. Friend said that there had been many complaints. It is clear that they were not taken seriously; otherwise the extreme practices that are described in the report would 191 not have taken place for so long. That revelation and my casework lead me to conclude that hospital authorities in the NHS fail to investigate complaints properly, especially when they are against senior staff who are able to influence the promotion prospects of their colleagues. Is he confident that the changes that are being implemented in the NHS complaints procedure and other arrangements will deal with the problem of how such matters are investigated?
§ Mr. Milburn
My hon. Friend makes a cogent point. The existing complaints procedure is inadequate. It must be changed and made more independent. However, we should not use the failures in the system to excuse the failures of individuals at Alder Hey. The complaints were clear and consistent, and did not come just from patients. Ironically, many of the complaints about van Velzen's procedures came from other doctors. For example, there was a huge backlog in the number of post-mortem cases and he did not undertake the appropriate histological examination. Doctors in the trust complained about that to van Velzen, to the pathology department and, as the report makes clear, to managers. Sadly, the appropriate action was not taken. We must learn the lesson of that and ensure that internal procedures work. We need checks and safeguards but, more important, we must use external complaints from patients to introduce change rather than to cover up problems.
§ Mr. Harry Barnes (North-East Derbyshire)
Did any of the complaints lead to internal inquiries at Alder Hey? Untoward incident procedures are dealt with internally. If there were internal inquiries, what were their substance? Were they anything more than a cover-up and whitewash of those unhappy events?
§ Mr. Milburn
When my hon. Friend gets an opportunity to read the report, he will see that an endless succession of inquiries was conducted by the university, the hospital authorities and senior clinicians, but they came to nought. Is not that precisely the series of events that we see all too often in the NHS? Everyone knows that there is a problem, but no one does anything about it and the patients suffer. That is why we need not only a new culture and way of working in the NHS, but new systems. That is why clinical governance, a statutory duty of quality, a patient advocacy service and a patients forum that is independent of the hospital are needed in every trust. Those will make a profound difference because they will break down the barriers that have often meant that serious complaints have not been dealt with as they should have been.
§ Dr. Howard Stoate (Dartford)
The dismay expressed by all hon. Members will be shared by the many people who work in the NHS who will feel extremely let down by what has happened. How can we ensure that such tragic events, from which we must learn great lessons, 192 will not massively undermine public confidence in the NHS, which would be detrimental to patient care in the long term?
§ Mr. Milburn
I very much agree with my hon. Friend's comments. It is important that the trenchant criticisms of the Redfern report and the chief medical officer do not allow us to lose sight of the truism that the overwhelming majority of people who work in the NHS—the doctors, nurses, managers and so on—are doing their best for patients. They are good—not bad—people. We cannot allow a few bad apples to damage the reputation of the health service as a whole. It is true that profound cultural changes must take place.
Public confidence will be most undermined if problems are covered up—we will not be able to deal with them unless we can get them out in the open. By dealing with them, we will rebuild public confidence in Alder Hey and in the health service as a whole.
§ Mr. Hilary Benn (Leeds, Central)
Further to the point made by my hon. Friend the Member for Keighley (Mrs. Cryer), when my right hon. Friend reviews the law will he take the opportunity to examine some of the areas of legal uncertainty that currently surround the taking of organs for donation, such as issues pertaining to elective ventilation? With the informed consent of patients and their relatives, we might be able to increase the number of organs for donation.
§ Mr. Milburn
Those are hugely important and sensitive issues, and we will of course have to consider them. There is a more general point that we have to view informed consent as something that applies not only to a narrow group of patients but to every single patient in the NHS. We have a long way to go, but I believe that the changes in law, training and practice recommended by the chief medical officer, which I have outlined this afternoon, will produce the right results.