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Lord Cope of Berkeley: I am not sure whether the Minister was hinting that if my amendment was rewritten to say something like "persons appearing to be engaged in licensable conduct" it would be more acceptable. I am not trying to hold out any particular credit for the drafting used in my amendment as opposed to other drafting, but the Minister's words seem to indicate the difference between Clause 18, which allows powers of entry to premises owned or occupied by any person appearing to be a regulated person, and Clause 1 where it is only persons engaged in licensable conduct who are to be inspected. There appears to be a difference between the two clauses, the difference hinted at in my amendment. We may try again with different drafting to see if we can bring this matter into line. At this point, I beg leave to withdraw the amendment.
Amendment, by leave, withdrawn.
Lord Burlison: I beg to move that the House do now resume.
Moved accordingly, and, on Question, Motion agreed to.
Alder Hey Inquiry Report
3.45 p.m.
Lord Hunt of Kings Heath: My Lords, with the leave of the House, I shall now repeat a Statement made in another place by my right honourable friend the Secretary of State for Health. The Statement is as follows:
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"With permission, 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 should 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.
"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 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'.
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"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 large numbers 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.
'a lack of respect and a failure to appreciate the circumstances which led to the taking of human material'.
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"Some of these entries date back many years. 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. He was appointed 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 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.
"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 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 its 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 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 which 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 Professor van Velzen was funded--was not advanced one iota by his practice of stripping of organs from children.
"The question in the minds of parents and of 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 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. 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 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.
"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 chair 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.
"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 relationship with the community 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 that organ retention without relatives' full knowledge and agreement was widespread. The recent national summit on organ retention organised by the Chief Medical Officer, 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 thousand hospitals account for 88 per cent of the organs. At least 16,500 of these 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 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 have 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 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: a new statutory duty of 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 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 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's 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 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 bring in the necessary changes.
"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.
"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. When I met families from Alder Hey, from Bristol and 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 pathologists 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 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 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.
"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 we will now make will provide some comfort for the pain they have endured. I commend the reforms to the House".
4 p.m.
Lord Astor of Hever: My Lords, I am grateful to the Minister for repeating the Statement made in the other place. We on these Benches accept that this is a balanced Statement which accurately and broadly covers the issues raised by the inquiry, even though it does make for very harrowing reading. We further agree that the NHS is staffed primarily by good doctors, rather than the type of bad doctor exemplified in this Statement.
The situation at Alder Hey and elsewhere is troublesome. We on these Benches extend our deepest sympathy to the families involved. People will be rightly shocked by the revelations emanating from Alder Hey that the NHS has sold retained body parts without the knowledge and consent of parents or families. It is a disgraceful situation and one that rides roughshod over the dignity and respect that should be accorded to families in extremely distressing personal situations. However, we must keep the matter in perspective and resist the temptation to over-react.
There are two clear issues. The first concerns the activities of one specific professor who consistently lied and broke the law in an otherwise outstanding hospital. Perhaps I may ask the Minister whether Professor van Velzen is being investigated elsewhere, or indeed in another country. The second issue is a more general one--that of how to approach the
retention and use of tissue and organs. The retention of certain body tissue is critical to medical research and must continue. Other patients can and do benefit from the use of otherwise discarded tissue. To ensure the continuance of medical research, we need adequate mechanisms for the giving of consent.The Statement by the Secretary of State mentioned that the law will be changed to enshrine the principle of informed consent. We on these Benches have offered to incorporate that principle into the Health and Social Care Bill, currently being debated in the other place. From a personal point of view--and I can speak from the heart on this, as I have suffered the terrible tragedy of losing a very young baby--I would have been prepared to allow tissue to be used for medical purposes in order to help others, provided that the pros and cons were properly and sympathetically explained. However, that would require us to ensure that parents and families were informed by carefully trained staff, who will hold these discussions in what are certain to be very trying circumstances. The Statement mentioned that all NHS trusts will have in place support mechanisms for families at the time of bereavement. Will the Minister tell the House what those mechanisms will be, what guidelines will be put in place, and when?
We feel that there is a need for the special commission under Professor Margot Brazier to be particularly sensitive when dealing with the return of organs. Some families undoubtedly will wish to have them returned. For others, that would simply reopen painful memories. We ask the Government to pay particular attention to this matter and to ensure that, if multiple organs are to be returned, they are returned at one and the same time, thus avoiding repeated suffering for the families involved.
In conclusion, we welcome the broad thrust of the Statement. It is vital that the Government act to respond to the real concerns raised by the Alder Hey inquiry.
4.4 p.m.
Lord Clement-Jones: My Lords, I, too, join the noble Lord, Lord Astor, in thanking the Minister for repeating the Statement made in another place. We on these Benches also very much welcome the Statement. It is a truly appalling story, which seems to illustrate practices of the 18th century taking place in the 20th and 21st centuries.
The Chief Medical Officer's report is, if anything, more shocking than the Redfern report, because it demonstrates that the culture is at fault. The findings in relation to Alder Hey are particularly shocking because of the activities of one man. However, the CMO's survey appears to indicate that the failure to obtain informed consent was part of the culture of organ retention in many hospitals. Alder Hey is not a completely isolated example of the culture. We therefore need a complete culture change in addition to any legislative change. The problem concerns not only the law but also the language.
I was interested to note that in his Statement the Secretary of State illustrated that the word "tissue" is a euphemism. "Tissue" also covers organs. While welcoming the Secretary of State's commitment to changing the provisions of the Human Tissue Act 1961, we hope that any change to the law will explicitly make it clear for what informed consent is being obtained. That is absolutely vital.
Like the Secretary of State and the noble Lord, Lord Astor, we agree that research is important. In the wake of this extremely harrowing report and the CMO's findings, it is important that the Department of Health should carefully consider what steps can be taken to restore public confidence in scientific research. As we have heard, much of the Alder Hey research into heart surgery was extremely important for some of the children involved. I commend the Secretary of State's speech made yesterday to the King's Fund. The benefits of scientific or medical research are not self-evident, but we should not stifle the benefits of scientific inquiry. I do not believe that the public will recognise the benefit of scientific research unless it is clearly seen to be useful. It is therefore for the scientific and medical community to persuade the public of the benefit of that research; and they must be quite open about the nature of the research.
I greatly welcome the indication in the Statement that other steps are planned by the department. I welcome the setting up of the special commission to oversee the return of organs and tissue, and I add my voice to that of the noble Lord, Lord Astor, about the process by which that is to be done. It is quite unacceptable that Alder Hey parents had to hold several funerals for organs returned at different times. A review of the coroner system is well overdue. In view of the joint tenure of many doctors clinically active in hospitals and engaged in university research, accountability and management arrangements between NHS trusts and universities is also an extremely important issue. We welcome the proposal for a statutory code of practice governing the retention of organs. In view of the recent case revealed at Alder Hey, and only today at Great Ormond Street, it is important that the passing over of organs in return for an administration fee (or whatever euphemism may be used) should be covered by such a code.
I have a few questions for the future. The Statement makes it clear that Professor van Velzen will be pursued under the criminal law and by the GMC in relation to his professional practice. However, other clinicians are also involved. A Dr Bouton practised in the same hospital prior to Professor van Velzen. I have no doubt that clinicians in other hospitals have breached the Human Tissue Act and have, to say the least, been cavalier in their treatment of consent. I hope the Minister can assure us that hospital trusts will be encouraged to ensure that those doctors are brought before the GMC to have their records examined.
The requirement for legislative change is all very well, but the key issues concern monitoring, how consents are obtained and how storage is effected. It is extraordinary that the hospital authorities did not
raise their eyebrows in relation to the practice of storing these organs. Can the Minister say what arrangements will be made to ensure that such practices are properly organised in future? What compensation will now be offered to some of the affected parents?Further, will the General Medical Council be drawing up guidelines to ensure that such issues are properly tackled from now on? In particular, what is to become of these collections? As can be observed from the CMO's report, we are talking about major collections. Can we start afresh with some of these issues? For example, even if such organs cannot be identified, do we need to keep such macabre collections of organs in hospitals and universities throughout the country?
Finally, will the Polkinghorne code of 1989, which related to foetal material, now be revamped and incorporated in the guidance on tissues and organs? After all, one of the most scandalous issues relates precisely to foetuses at Alder Hey, which, in a sense--again, it is a use of language--might be excluded from examination if we were purely talking about individual organs.
I accept the statement made by the British Medical Association that it wants to work in partnership with patients in discussing acceptable ways in which organs are used for scientific and medical research. As a result of the appalling events at Alder Hey, and the unacceptable practices discovered in NHS hospitals and universities, I hope that we can use today to make a fresh start.
4.11 p.m.
Lord Hunt of Kings Heath: My Lords, perhaps I may begin by thanking both the noble Lord, Lord Astor of Hever, and the noble Lord, Lord Clement-Jones, for their measured response to the Statement. As the noble Lord, Lord Astor, said, the report comprises over 500 pages and makes harrowing reading. He is right: it was a disgraceful situation. Our sympathies are very much with all the parents involved.
I accept what the noble Lord, Lord Astor, said--indeed, this was mentioned in the Statement--that, overall, we have very dedicated doctors and other staff within the National Health Service. We need to reflect on that fact when considering the action that now needs to be taken. However, there is no doubt that there has been a significant cultural change in our society over the past 20 or 30 years. What may once have been acceptable practice is no longer so. I believe that many people working in the NHS have failed to realise that that change has taken place. If we are to see good coming out of this report, it will be by way of a change in the overall culture of the health service. We must also strive to make sure that it helps us to change our practices. In turn, that will ensure that the public, parents and relatives are fully aware of what is happening to their loved ones, so that when they are asked to give consent they will do so in the full knowledge of what they are being asked to do.
The noble Lord, Lord Astor, asked me what action is being taken against Professor van Velzen in other countries. My understanding is that there has been an investigation by the Canadian police, but I have no knowledge of the outcome. As I said when repeating the Statement, the GMC has called a hearing for Friday of this week. In addition, the Redfern report has been referred to the Director of Public Prosecutions.
I very much agree with the noble Lord, Lord Astor, who talked about the benefit of organ retention for research purposes. It is absolutely essential. However, as I said, it can be done only on the basis of informed consent and a proper process whereby parents and relatives can be properly counselled and advised. They must have a full understanding of what it is that they are being asked to do. If we can do that and change the culture of the NHS, I also believe that parents would, if they so wished, give their consent on that basis.
I took note of the offer from the noble Lord, Lord Astor of Hever, of the Opposition's help in regard to legislation. No doubt that will have to be discussed in other places. I thank the noble Lord for his suggestion. I can tell him that we shall seek to introduce legislation as soon as possible. That is certainly so in relation to the Human Tissue Act 1961, the core issue of consent, and the issue of sanctions against doctors who do not carry out the provisions of that legislation. One of the problems with the Act at present is the fact that there are no sanctions. As well as the immediate issue of the Human Tissue Act, we shall need to look at legislation in the long term to ascertain whether the whole area of regulation in relation to organs needs to be tightened and considered afresh.
Both noble Lords referred to the position of families as regards the support to be given to them. In particular, they asked what arrangements will be put in place for counselling generally throughout the National Health Service. I can tell the noble Lord, Lord Clement-Jones, that, in terms of compensation, it is up to individual families to decide whether they wish to take legal action. In that event, they would have to establish legal liability. I cannot comment any further in that respect.
I can tell noble Lords that we expect effective counselling and support to be available, both in relation to parents affected by what has happened at Alder Hey Hospital, and in relation to the many other hospitals throughout the NHS with retained organs which are likely to receive inquiries from parents regarding whether any of their children's organs have been retained.
We accept that bereavement advisers should be available in all trusts to explain and/or arrange full clinical explanation of the circumstances of death, the reasons for post-mortem examination and the need for consent to hospital post-mortem and retention of organs. In the interim guidance issued by the Chief Medical Officer in March 1999, we called for a designated person to fulfil that role. I have no doubt that the new commission on organ and tissue retention will follow that through, as will the department, to
ensure that that happens. In addition to overseeing the return of tissues and organs from collections around the country, it is worth pointing out that the role of the organ retention commission will be to ensure that suitable counselling is available for families. More importantly, it will act as an advocate for parents if problems arise. Given the sensitive nature of this issue, parents need someone to turn to for help and advice. Above all, while acting as an advocate for parents and handling inquiries from families and the public, the special health authority will have a crucial role to play in that process.The noble Lord, Lord Clement-Jones, referred to the culture change needed in the NHS. I agree with him and, indeed, have already spoken on that issue. The noble Lord asked how that would be effected. The outcome of the Alder Hey report and the census by the Chief Medical Officer, together with his recommendations, will be very powerful accelerators to that culture change. But the code of practice that will be issued, the change in the law and, I believe, the work of the newly established commission will all have a part to play in that development. I certainly accept the point that the noble Lord made; namely, that we also need effective performance management within the NHS to ensure that that change takes place. In that way we shall restore public confidence.
The noble Lord, Lord Clement-Jones, is also right to say that we need to do more in the area of public education in terms of research--and not just as a result of what has happened at Alder Hey. More generally, we must encourage greater public confidence in what we seek to do by way of research. Again, the report of the Chief Medical Officer touches on that point.
The noble Lord also referred to the issue of university/trust relationships. One of the most important points in the Redfern report is that Professor van Velzen was not dealt with effectively, despite the fact that poor practices were known about, because of the difficult relationship between the university and the trust concerned. We therefore asked the DfEE to review the issues that arise in relation, in particular, to doctors who have joint contracts with a university and a trust, and it agreed to take the lead in that process. I hope that that review will also examine some wider issues. At the end of the day, we need good, robust relationships between universities and university trusts with regard to teaching, research and further education.
As to disciplinary action, I confirm to the noble Lord, Lord Clement-Jones, that we have indeed referred several of the doctors who are mentioned in the report to the General Medical Council. We have also referred two medical laboratory scientists to the Council for Professions Supplementary to Medicine. Several other people who are named in the report have been referred to their employer's authorities for the consideration of disciplinary action.
We have identified a problem with NHS mangers who move from one trust to another and for whom there is currently no professional regulation. We shall institute discussions with the NHS Confederation, the
British Association of Medical Managers and the Institute of Health Services Management to establish whether it is possible to develop codes of practice and of conduct for those managers.I agree with the noble Lord, Lord Clement-Jones, that we need to consider the future of collections that are put together by universities and hospitals. We look to the commission on organ and tissue retention to advise us on that matter.
4.22 p.m.
Lord Alton of Liverpool: My Lords, for two years from 1990 my then two-year-old daughter was operated on and treated at Alder Hey Hospital in Liverpool. I put on record my admiration for and gratitude to the staff--the nurses and doctors--for the extraordinary love, care and professionalism they showed during that period. I do not believe that I am alone in saying that; I do so on behalf of the many parents whose children have been treated there over the years. We have watched this unfolding scandal become a tragedy for that fine hospital. It is a tragedy that the actions of predominantly one man have brought the hospital into such disrepute. His actions destroyed the reputation of a fine hospital and caused immense grief to parents who had already suffered the pain of bereavement.
I want to put four brief points to the Minister whose Statement to the House this afternoon I welcome. The first concerns the legislative changes that he announced today. Will the Government make it a criminal offence to possess and use any or all human material without consent? Secondly, will he reiterate the importance of the family and its protection, especially at times of sorrow and bereavement?
Thirdly, I turn to the desirability that the Minister and others rightly expressed about the use of organs in circumstances in which consent has been gained. Does he agree that even when written consent was obtained at Alder Hey Hospital, in most if not all cases the retention of tissues and organs was not fully and properly explained? Parents were not told what material would be retained; in particular, as the Minister said, they were not told that whole organs would be kept by the hospital. The word "tissue" was not explained, so that even those who read the consent form would not know that "tissue" could comprise major organs. Parents were not told how retained material would be used or for how long it would be retained.
Finally, following the revelation of the sale of glands of living children, which has already been referred to, will the Minister review the way in which commercial arrangements are entered into and the possibility that such considerations have been allowed to overshadow the high sense of idealism, ethics and humanity that should characterise the medical profession?
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