| Previous Section | Index | Home Page |
7.48 pm
The Parliamentary Under-Secretary of State for Health (Ms Hazel Blears): I am grateful to the hon. Member for South Cambridgeshire (Mr. Lansley) for raising this important subject. It enables me to outline some of the steps that the Government have already taken to improve practice—he has already referred to some of them—set out our plans for the future, and respond to the specific points that he thinks should be included in the review of the legislation.
I have met families who have experienced such circumstances, so I am well aware of the distress, anguish and pain that many of them have endured for a considerable time. It has always been my intention to involve families as much as possible so that, hopefully, such things as codes of practice and the piloting of forms will command the trust and respect of families as well as the professionals involved. Families must be at the heart of our policy.
We are aware that, in the past, protocols for the taking, retention and use of human organs and tissue were often less than adequate. Too often, insufficient thought was given to seeking the consent of relatives at the time of hospital post-mortems. As the hon. Gentleman knows, the law governing organ and tissue retention, particularly the 42-year-old Human Tissue Act 1961, is unclear, ambiguous and outdated. The law has, in any event, been poorly understood, and, as a result, not applied well in practice. The Human Tissue Act had no regulatory framework, penalties or sanctions to support it. That was in marked contrast to the Anatomy Act 1984, which, in relation to whole body donation, has a full regulatory framework, as well as sanctions. Clearly, discrepancies existed in the law in those two areas.
Custom and practice developed within this framework of law, which relied far too heavily on traditional and paternalistic attitudes under which the benefits of pathology for diagnosis, post-mortem examination, teaching and research were understood, but the wishes and feelings of families were not sufficiently recognised. In those terms, we got the balance wrong. That damaged public confidence across a wide spectrum of pathology. It must be recognised, however, as the hon. Gentleman has done, that the removal and use of tissue samples and organs for matters such as medical research and education has significant implications for everyone's health. It is an important matter, and we cannot address today's public health challenges without that facility.
We have only to consider the present worldwide concerns about severe acute respiratory syndrome—SARS—to recognise that we need good research and education. We need to develop new drug therapies, so the diagnosis of existing conditions and the training of medical professionals all rely heavily on the donation of tissue and organs. Therefore, unless we rebuild confidence in the system, we will not receive those vital donations. Certainly, my experience is that families are often happy to contribute to the development of medical education and science, provided that they have been properly and fully informed at the outset.
As a result of the incidents not just at Alder Hey but right across the country in relation to organ retention, there has been a damaging effect on pathology as a whole, and there have been particular problems in paediatric pathology. We now have a big programme in the NHS to try to attract more people into the paediatric pathology work force, to ensure that more people get involved and to provide more training places. We are funding a range of fellowships to try to get more people into the field, and developing guidance for the NHS on modernising pathology services in general, to try to ensure that patients have access to high-quality diagnostic services. We must not lose sight of the fact that we need good-quality pathology in the whole NHS.
The hon. Gentleman mentioned the investigation that my right hon. Friend the Secretary of State asked the inspector of anatomy to carry out into the case of the late Mr. Cyril Isaacs, who died in 1987, and into the retention after coroners' post mortems that took place at that time. We expect his report to be published shortly—it is currently with the Secretary of State for consideration—and we will consider it carefully to try to make sure that we reach a balanced view in relation to
the rights and wishes of families and the needs of pathology. It is imperative that we recognise the legitimate expectations of patients and families, and at the same time try to ensure that medical science is safeguarded for the long-term protection of the health of the community. Any approach that we take, however, must have the full support of patients, families and the public at large. That is how we will secure medical science for the future. Our aim is to ensure that future arrangements protect the interests of everybody involved and that we retain important medical and educational benefits.The hon. Gentleman has set out some of our reforms, which we began in March 2000 when the chief medical officer set out interim guidance stressing that valid consent would be sought for hospital post-mortem examinations and for any retention of organs. That was the first step taken to try to restore confidence in the field.
Sir Liam carried out an investigation and census of retained organs to gauge the extent of the problem nationally, and he published further advice in January 2001. That included 17 recommendations to change practice and culture across many areas of clinical work. My right hon. Friend the Secretary of State accepted all the recommendations.
The programme of action that has been undertaken in this arena since 2001 has already achieved significant improvements. New guidance from the Department of Health, the Retained Organs Commission, the Royal College of Pathologists and others is already supporting transparent new systems founded on consent. Major changes have been made in the way consent is sought, codes of practice have been drawn up to inform and support families, regulatory controls are being developed and a wholly revised framework of law will aim to provide a single, comprehensive statutory basis for practice in this area.
I pay tribute to everyone who has been involved in that process—the professionals, pathologists, researchers and the people in a range of caring professions who have contributed. Despite their distress, many family groups have been prepared to consider the code of practice and forms to see what could be done in practical terms. I understand that family groups in the hon. Gentleman's area have contributed helpfully in the consultation on the review of the law. They have been involved and have made a difference.
We have issued in the past week a comprehensive interim framework of information and new guidance. We have an interim statement on the use of human tissues and organs under the current law to try to help clarify the position pending new legislation. The code of practice on families and post mortems sets out how families should be communicated with about all post-mortem examinations. We have standardised forms for obtaining consent and information leaflets that set out exactly what is happening, the rights of patients and their families and what they can expect from the decision-making process. A code of practice on the import and export of human body parts deals with a significant concern, and we also have a report on the consultation that took place on the legal framework.
All those materials emphasise that the wishes of the person who has died and those close to him or her should be respected—that is the overriding consideration— that organs and tissues must not be retained following post-mortem examination without consent, and that accurate records must be kept of consent and of the tissue and organs retained. A great source of distress to families has been the delay in finding accurate records so that they know exactly what has been retained, where it is and how it can be returned. Families should also be informed about post-mortem findings and about any organs or tissues retained.
We are working closely with the Home Office to support the implementation of the guidance, forms and leaflets not just throughout the NHS but to encourage their use by coroners' services. We have made sure that family support groups have been involved at every step, and the documents are available on the website and in the House.
Our work to progress the Government's commitment to the review of the law moved into a major new phase in July last year when we published the consultation document "Human Bodies, Human Choices". It reviewed the law in England and Wales and considered the full range of circumstances. There was a series of facilitated workshops and a major national conference in November last year. It represents a real attempt not just to come up with a proposed Bill out of the ether, but to work genuinely from people's experience. That process has made a significant contribution to our preparations for a Bill and has strengthened the way in which it will work.
The Bill's objective will be to provide a more systematic and comprehensive framework. We need to have clear, unambiguous and transparent provisions so that people know exactly where they stand and what they can expect from the legal framework. We want to ensure that there will be statutory requirements about consent to underpin the legislation. There will then be a proper legal framework in which consent should be obtained for tissue or organ removal, storage and use that sets out clearly the duties and a proper regulatory framework to oversee and support compliance. Provision will be made for penalties to be introduced for certain breaches, and the hon. Gentleman made important points about the distinction between organisational and individual accountability. Codes of practice will be established for the import and export of human body parts and other issues. Such a framework will provide better protection, support the patient involvement agenda across the NHS and give clarity for professionals so that they know that they are acting properly within that legal framework. Unfortunately, as he said, sanctions and penalties will be necessary in some circumstances.
I am pleased to confirm that we intend to introduce the Bill as soon as parliamentary time allows. I can give the hon. Gentleman the undertaking that we hope to publish the draft Bill for parliamentary scrutiny before the summer recess. We are anxious to get on with the process, which started with the chief medial officer's report three years ago.
Some people expressed concern because we did not immediately introduce the relatively simple legislative recommendations on sanctions and legal duty. We found that the law was complex and deep ethical considerations had to be taken into account. It is right to consider the law as whole and to get a proper new regulatory framework rather than to rush into making simpler amendments that would need to be undone and incorporated into a better regulatory framework at a later stage. I am happy that we are proceeding appropriately, but I accept the hon. Gentleman's point that we need to get on with the process so that we give people the security that they require.
The hon. Gentleman's points about consent, the definition of next of kin, reports to families and the essence of donation are important. They can all be raised at the pre-legislative scrutiny stage and we look forward to further discussions on them.
I reiterate our commitment to the families of children and adults who have found themselves in such circumstances and we are determined to make a difference—
The motion having been made after Seven o'clock, and the debate having continued for half an hour, Madam Deputy Speaker adjourned the House without Question put, pursuant to the Standing Order.
| Next Section
| Index | Home Page |