Previous SectionIndexHome Page

6 Nov 2002 : Column 117WH—continued

6 Nov 2002 : Column 118WH

Organ Retention

12.30 pm

Keith Vaz (Leicester, East): I am pleased but saddened to raise the case of my former constituent, John Hall, who passed away on 3 June 1992. He was a brave man; like millions of his fellow citizens he served his country as a member of the armed services. He was a local councillor in Leicester, and subsequently in Leicestershire. His wife was a justice of the peace and served for a year as the lady mayoress of Leicester. They had three sons—Colin, Ian and Mark.

I have raised the case of John Hall before in the House—on 25 February 1992. I did so because John was a nuclear test veteran. He was born in Burnhope in county Durham, and he moved to Leicester in 1961. He joined the Royal Air Force in 1956, and he was an electrical mechanic who served with 76 squadron of the RAF, which did all the sampling of nuclear tests in the 1950s. The squadron was responsible for flying through the bomb clouds to pick up samples of radiated particles, and he was employed as an aircraft electrician serving the Canberra bombers used for that purpose. He served at RAF Edinburgh Field from 8 October 1957 until 19 August 1958, during which time he was detached with the squadron to Christmas island in the Pacific ocean from 3 March until 19 May 1958 for Operation Grapple Y. The squadron had gone there for the H-bomb test of 28 April 1958.

John Hall was treated for high-grade B-cell non-Hodgkins lymphoma, and subsequently for hairy-cell leukaemia. He received chemotherapy and other treatment at the local hospitals in Leicester.

I raised this case on the previous occasion because of the ongoing campaign for compensation for nuclear-test veterans. I do not wish to dwell on the history of that campaign because it has been aired on several occasions in the House, and it has been the subject of petitions to Ministers. Just before John Hall died, I had a meeting with the former Prime Minister, the then Member of Parliament for Huntingdon, Mr. John Major. Defence Ministers have also been involved in the matter, and the campaign continues. I pay tribute to the nuclear test veterans for the work that they have done, and to the newspapers that have supported them—The People, The Independent and, most recently, The Mirror.

The importance of Mr. Hall's case in the context of the previous campaign lies in what happened to his wife Marilyn a few weeks ago. I attended the funeral of John Hall, which took place in June 1992, as did many thousands of people from Leicester. I thought that the matter had then ended. However, a few weeks ago, I visited Marilyn and Colin Hall at their home. Marilyn burst into tears. She had just received a letter from the Leicester royal infirmary informing her that, when her husband died, his brain was removed, as were the other parts of his body that form tissue blocks, and that they had been retained at the hospital. The letter continued to say that the brain was disposed of seven years later through what the hospital described as the "hospital system". It was clearly shocking for the family to receive such a letter. Mrs. Hall has been so distressed that she could not be present to listen to the debate, but her son is watching our proceedings.

6 Nov 2002 : Column 119WH

The tragedy of the case is that, after people bury their loved ones, they feel that that is the end of the matter. They do not believe, even in their wildest imagination, that years later they will discover that they have buried a person without his brain or other parts of his body. Marilyn Hall discovered what had happened only because she had listened to a programme on BBC Radio Leicester that featured another person talking about organ retention. That is why she wrote in.

The hospital did not offer to visit Mrs. Hall. It did not tell her in person about the terrible situation after it discovered that the brain had been removed and disposed of. It just wrote to her, and I have checked the facts because there was dispute about them.

Several questions arise from the case that affect not only my constituent, but people throughout the country. I am worried about the subject because my wife and I had a stillborn child in 1993. I discovered only while researching for this debate that the bodies of stillborn children were retained by several hospitals. I wonder what happened to the body of my child in 1993, and others will be worried about what happened to their loved ones.

I know what the Government have done about organ retention, and I pay enormous tribute to my hon. Friend the Minister, her team, previous Ministers and previous Secretaries of State for the way in which they reacted thoroughly to the Bristol case, its aftermath and the inquiry into it. That case primarily related to children's heart surgery and, at that time, everybody started to talk about organ retention. The case followed the inquiry into practice at Alder Hey children's hospital in Liverpool where it seemed that the retention of organs was especially common. There was a subsequent census by the chief medical officer of all organs and tissues retained.

The census showed that approximately 54,300 organs, body parts, stillbirths or foetuses were held by pathology services at the end of 1999. They had been retained from post mortems that occurred between 1970 and 1999. The holdings of 25 of the 220 national health service trusts and medical schools—12 per cent.—accounted for 88 per cent. of the total retentions. Nearly half the retained organs were brains, and a sixth were hearts. A total of 2,900 stillbirths or pre-viable foetuses were held. Organs were retained from 17,800 adults and 9,800 from children aged one to five, infants, stillborn babies or foetuses.

Several recommendations were proposed, and the Government accepted them all in full. I have enormous respect for my hon. Friend the Minister and I am sure that she will tell us about the good work that has been done on the code of practice and about changes made over the past 10 years. We accept that and welcome it. However, this case raises new questions. I am worried—I am sure that other hon. Members will be worried—about the number of members of the public who will contact hospitals after hearing about the case. We thought that the findings of the census would be the end of the matter.

When I met the health trust a few months ago, it assured me that it had searched through its files, cupboards and laboratories and it said that there was

6 Nov 2002 : Column 120WH

nothing left. However, Marilyn Hall was shocked to learn that information about John's brain had been discovered. When she asked why the brain had been taken, the hospital replied that it did not have any notes on the brain. We then asked how, if the hospital did not have any notes, it could know that the brain had been disposed off.

Can my hon. Friend the Minister produce the note that led the hospital to confirm that it had the brain in the first place and that the brain was subsequently disposed of? Secondly, what does disposal in the hospital system mean? We know that the brain was not buried with the body and that the tissue blocks are still with the royal infirmary. Surely the hospital should have come forward at some time during the seven years, told Mrs. Hall that it had discovered the brain and asked her what she wanted to do with it. She would most probably have replied that she wanted a reburial.

We are not talking about a small organ. I checked with the hon. Member for Wyre Forest (Dr. Taylor), who is the only doctor I know in the House. He told me that the brain is almost the same size as our skulls and that our skulls are comparatively thin. The brain is therefore a large organ. It is not easy to take such an organ from the laboratory or wherever the hospital was keeping it, put it somewhere else and then dispose of it. Was the brain buried? Where was it put? Was it incinerated? Are there any incineration records? Mrs. Hall and her family need to know the answer to those questions because that would reassure them about what has happened.

Can we now have an immediate audit of all the laboratories and all the facilities in Leicester so that no one else will get the terrible surprise that Mrs. Hall and her family have had to face? The brain was removed at the time when everyone knew that John Hall was a nuclear test veteran. We also know that a Ministry of Defence official attended the inquest because John served on Christmas island. Did the MOD have anything to do with the retention of his brain? Did it carry out any tests? Did it receive a report? Clearly if we are trying to make out a case that the leukaemia was caused by what happened on Christmas island, the retention of—and tests on—this organ was important. What was the involvement of the MOD? I will not accept the excuse that we sometimes hear that this is a matter involving the security or intelligence services. We want the facts about MOD involvement.

Will my hon. Friend the Minister meet urgently with her counterpart in the Home Office to discuss how coroners are involved in the system? The hospital says, "It is not our fault; the coroner made the order." Mrs. Hall did not consent. The hospital says that the issue is not about consent, but about whether a person objects. Bereaved people do not think about such things at the time. Why did the coroner make that decision? Can we have the coroner's files? Can we know who the coroner was? Can we know why he called the Ministry of Defence? Can we have all that information? I know that my hon. Friend cannot give us that information because it is held by the Home Office, but I do not want to hear her say that it is a matter for another Department. We want the facts of the case. We want to know what is happening.

6 Nov 2002 : Column 121WH

As a general point, let us have better liaison between the coroners service and the health service. We know that the responsibilities of one stops and the other starts, but a great mystery surrounds coroners. I know that we watch "Silent Witness" on a Sunday night and see the work that Amanda Burton does. I wish that all the coroners and all the people associated with pathology were like those whom we see on television, but frankly, they are not. We do not know who they are, yet they make crucial decisions that affect the lives of people.

Finally, we need the Minister's assurance that there will be an inquiry. I know that it would be helpful to meet others to discuss the situation on the family's behalf, but they have had enough of meetings. They want to know the facts. They want an inquiry into the whole issue, and they want these matters brought to our attention. We know that the situation has changed and that things have become better, but we want to ensure that the truth comes out, not only for Marilyn Hall, but for people like me and my wife and the thousands of others who will hear about this case and be anxious about what might happen. The bodies of dead people need to be treated with respect, and especially that of John Hall given his record of service to the country. I knew John Hall, so in a sense this case matters more to me than some others. Dead bodies should not be hacked about in such a way, taken to pieces, and left in different parts of the home city, as they were in the case John Hall. I want to know what my hon. Friend the Minister will say about that, but I assure her that the matter will not stop here. We intend to pursue it until we get to the truth.

12.46 pm

The Parliamentary Under-Secretary of State for Health (Ms Hazel Blears) : My hon. Friend the Member for Leicester, East (Keith Vaz) has secured an extremely important debate. I am very aware of the keen interest that he has taken in the case of the late Mr. Hall, and that he has sought further information about the disposal of Mr. Hall's brain and other tissues. My hon. Friend has pursued the matter through a wide range of channels on behalf of Mr. Hall's family, and has raised important and pertinent questions. I will do my best to respond to them. There may well be matters of detail that I will need to follow up after the debate, but I give my hon. Friend my undertaking that I shall pursue the matter and ensure that he receives answers to his questions on behalf of the family.

I take this opportunity to acknowledge the distress that this series of events has caused Mr. Hall's family. The recent discovery that Mr. Hall's organs and tissues had been retained by Leicester royal infirmary is of tremendous and understandable concern, especially as it came to light 10 years after Mr. Hall's death. I have had policy responsibility for this matter for the past 12 months, and I have met several families, especially in the Liverpool area, who have been involved with the issue of retained organs. I have met members of the various campaign groups, and have had first-hand experience of the depth of suffering, anguish and distress that many of those families have experienced as a result of the discovery that they made about the tissues and organs of members of their family. It is hard to overestimate the effect that that has had on families.

6 Nov 2002 : Column 122WH

I want to set out the information that I have on why Mr. Hall's brain and other tissues were retained by the Leicester royal infirmary. I am advised that his brain was removed on 5 June 1992, at the request of the local coroner, so as to hold an inquest. The law provides that the coroner can request the retention of any organs or body tissue that may assist with an inquest. I also understand that following the coroner's inquest, the late Mr. Hall's brain was transferred to the Leicester royal infirmary's histopathology department, and booked into the neuropathology department on 12 June 1992. An histology sample was taken at that point, and the remainder of the brain was stored in the tissue store until it was disposed of by, I am told, incineration—which was the normal hospital practice—on 13 December 1993.

There is a lengthy gap between 12 June 1992 and December 1993,and it is right to ask why the brain was kept for such a long period after the inquest. The disposal of Mr. Hall's brain was carried out in accordance with the protocols that pertained in the hospital at that time. My hon. Friend has gone through the history relating to the inquiry by the chief medical officer and the recommendations of the Alder Hey report, but every one of us would acknowledge that past systems were not perfect. They did not function in a way that recognised the dignity and the rights of the individuals and families concerned. That was the widespread practice throughout the country; it does not apply just to Leicester.

The Government take the matter seriously and have taken action to ensure that, in future, the systems work for people in local communities. Too often, consent was not sought. Partly as a result of a paternalistic system that attempted to protect people, such issues were not raised in discussions and in consultation between clinicians and families so routine consent was not sought. I stress that we have acted to ensure that that is no longer the case and, in every case, families must give their informed consent. That is the bottom line.

The law allows the coroner specifically to request the retention of organs or tissue to establish the cause of death. As my hon. Friend says, consent is not a requirement; it is a matter for the coroner to carry out an investigation. Systems need to be improved so that families are part of the process, and do not feel that people are riding roughshod over them.

The law governing organ and tissue retention—in particular, the Human Tissue Act 1961—is unclear, ambiguous and outdated. The law has, in any event, been poorly understood and, as a result, it has not been applied well. Custom and practice developed within the framework of the law and relied too heavily on the traditional attitudes of the people involved in a paternalistic system. The benefits of teaching and research were recognised, but the wishes and feelings of families were not sufficiently balanced with the need for teaching and research. The balance in the previous system was wrong.

The removal and use of tissue samples and organs in medical research and education has significant implications for everyone's health. The development of new drug therapies, the diagnosis of existing conditions and the training of medical professionals rely heavily on the donation of tissue and organs. Many people are happy to donate organs if that has been discussed with

6 Nov 2002 : Column 123WH

them and they are able freely and properly to consent to it. However, as this case illustrates, in the past, families were not always asked for their consent. That is why things went wrong.

In March 2000, we began to reform matters dramatically, setting out interim guidance to try to ensure that, from that point onwards, appropriate consent was given for hospital post-mortem examinations and for the retention of organs. That was followed up last year with further advice about the removal, retention and use of human organs and tissue, and 17 recommendations were made to change the practice and culture across the NHS. Major changes are now being proposed in the way that consent is sought. Families have had an input into the codes of practice that have been developed to work practically. There will be new regulatory controls and a wholly new framework of law for the system.

My hon. Friend raised the role of the coroner, which is most important. I am pleased to be able to tell him that part of the programme of work being carried out in response to the chief medical officer's recommendations is a review led by the Home Office in close contact with the Department of Health about the operation of the coroners service. The systems should not operate in isolation. They should be integrated and form part of the same framework and ethos that we are trying to establish in the health service.

Keith Vaz : I do not want to interrupt my hon. Friend, and I am grateful for the information that she has provided. However, I raised several specific points about this case. If she does not have time to reply to all of them, will she agree to meet Mrs. Hall, her family and me in the near future so that the rest of the answers can be given? The problem with ministerial replies is that they raise more questions that require still further debate. It would save time if we could meet in the near future.

On another important point, is my hon. Friend satisfied that today no organs that are unaccounted for are retained at the Leicester royal infirmary?

Ms Blears : On my hon. Friend's last point, I understand that 142 organs are retained by the university hospitals of Leicester and the NHS trust. It is the role of the Retained Organs Commission, which was established by the Government, to carry out an audit of where organs are located throughout the country and to assist the trusts and families in organising the sensitive return of organs when the families want that. The system works through families contacting the trusts to make inquiries about whether any organs are held. A search is then carried out of all the relevant databases to establish whether organs are held, and that is followed by a proper discussion with the families to find out what they want done with the tissues, blocks, slides, organs and so forth. Do they want a burial or would they rather that the hospital disposed of the remains? Everything is done very sensitively.

6 Nov 2002 : Column 124WH

Let me make it clear to Mr. Hall's family that, if they wish, the Retained Organs Commission can get in touch with them. Part of its role is to act as an advocate for families in these difficult circumstances and to discuss problems with the hospitals.

Keith Vaz : We will discuss this case with the commission, but the family would like to meet my hon. Friend the Minister. I know how busy she is, but these matters must be resolved. They have dragged on for 10 years. If the questions cannot be answered today, it would be helpful to arrange such a meeting.

Ms Blears : My ministerial colleague, the parliamentary Under-Secretary of State for Health, the hon. Member for Tottenham (Mr. Lammy), is in charge of this policy area. If outstanding matters remain, I am sure that a meeting could be arranged, but I can provide my hon. Friend with further information today. I am advised that the normal system used was incineration and that the organ was disposed of in accordance with normal protocols. I shall press the hospital to establish what records are available and when notes were made.

As to the Ministry of Defence, I am advised that it did not contact the trust or the coroner at any time, and I can supply that information to my hon. Friend today. I have already dealt with the Home Office review and I can confirm that close and ongoing work and liaison between the Department of Health and the Home Office is taking place and will continue in respect of this matter.

Over the past few years, the Retained Organs Commission has acquired a wealth of experience in helping families in these circumstances and it would be more than happy to get in touch with the family and liaise with the trust on its behalf to acquire any further helpful information.

Finally, we have issued a consultation document, "Human Bodies, Human Choices", which is all about advancing a fundamental review of the law in this sphere. Several workshops that included family members were conducted, so it is not a matter of only the Government making proposals. We are going out to people and asking what would work for them in the future. The consultation period ended in the middle of October and we are examining what we can do now to proceed as quickly as possible. Families want the recommendations of the chief medical officer enshrined in a whole new legal framework. I am acutely aware of the distress, trauma and pain caused to hundreds of families up and down the country. Clearly, Mr. Hall's family is feeling that pain. We are determined to ensure that this difficult and sensitive matter is handled properly in future, and that Mrs. Hall's legitimate concerns are answered as far as possible by giving the family a clear picture of what happened and information about why and what they can do now to ensure that any remaining tissues are disposed of as sensitively as possible.

Mr. Mike Hancock (in the Chair): I thank the Minister for her reply. If there is further information on the points raised by the hon. Member for Leicester, East (Keith Vaz), it would be helpful if it were placed in the Library. It would be beneficial if as much information as possible were available on this issue.

6 Nov 2002 : Column 125WH

6 Nov 2002 : Column 125WH

Next Section

IndexHome Page