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3.22 pm

Mr. Paul Burstow (Sutton and Cheam) (LD): I echo the remarks of the right hon. Member for Holborn and St. Pancras (Mr. Dobson)—a clear law that restores clarity to the issue will restore public confidence, thus enabling us to ensure that medical research and education continue to thrive and prosper. We do not want them to be damaged by the way in which the Bill

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may, or may not, work—something about which hon. Members on both sides of the House have voiced concern. Providing that clarity in the Bill will be the task of the Standing Committee.

We ought to acknowledge the fact that in some ways the Bill is born of failure: first, the failure of drafting and scrutiny by those who framed the Human Tissue Act 1961; secondly, the failure of pathologists and physicians who allowed the retention of organs after post-mortem without the family's knowledge to become commonplace; and, thirdly, the failure of institutions and managers either to provide adequate oversight of staff or to act on complaints. The Alder Hey and Bristol inquiries paint an extremely disturbing picture. Parents buried their children without knowing that many of them had not had their organs returned. In some cases, they did not even know that organs had been removed. It is impossible to step into the shoes of the parents who were affected and fully understand their anger, pain and sense of betrayal.

The chief medical officer's report on the census of organs and tissues retained by pathology services revealed that, while the malpractice of one particular pathologist was not the norm, poor practice and paternalistic attitudes were widespread. Over almost 30 years, 54,300 organs, body parts, stillbirths or foetuses were retained by pathology services. The census found that the vast majority of NHS trusts complied with the letter of the law and had signed forms of agreement from relatives. However, the Alder Hey inquiry and, indeed, the census found poor cataloguing and recording of retained tissues and organs in hospitals and university research collections. The distress caused to some families by second, third and fourth funerals must never be repeated.

As the summit held by the chief medical officer in January 2001 revealed, many parents had no idea what had happened. Some were given inaccurate and misleading information, some were lied to and told that they were burying children with all their organs returned. I cannot pass up the opportunity to cite part of the transcript of the summit, as it sums up the feelings of many parents who spoke that day:

That is how one of the parents expressed their feelings and anger. The words, "never used" certainly stay in my memory. Their children's organs were poorly stored and, in some cases, left on a shelf. Even when they were used, the lack of accurate records meant that there was no feedback to the families on any research that was undertaken. There was therefore no opportunity to provide a modicum of comfort that the research had led to some good.

The inquiries, census and summit led to the publication of 17 recommendations in a report by the chief medical officer entitled, "The Removal, Retention and Use of Human Organs and Tissue from Postmortem Examination" in 2001. The first recommendation, which has already been referred to,

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was to act immediately to amend the Human Tissue Act to remove any confusion between lack of objection and informed consent. That Act provides for a person to express their preferences in respect of the use of their body after death. In the absence of such an express wish, the onus is on the clinician to make such reasonable inquiries as are practicable to ascertain whether the surviving spouse or any other surviving relative objects to the removal of organs or tissue.

The test was therefore lack of objection. However, there was a defect in the Act, as it was vague about clinicians' tasks and how hard they should try to obtain the views of patients and relatives. Parliament's intention was not so vague. In introducing Second Reading in December 1960, the then Parliamentary Secretary to the Ministry of Health said:

In other words, a requirement for consent formed part of Parliament's intentions when the Human Tissue Bill was debated in 1960. However, that requirement seems to have been lost. Indeed, the Parliamentary Secretary went on to say:

That issue may be contentious today, but it was not debated further on Second Reading of the Human Tissue Bill. The Parliamentary Secretary made the position clear at the outset of the debate, so perhaps the drafting of the Bill and the lack of debate on consent are a reflection of the prevailing paternalism at the time. Although a recommendation to seek consent was made, a provision was not included in the Bill. It is academic now whether or not the Department of Health did, in fact, implement the Minister's words. The evidence of the inquiries and the census all points to a departure from the intended spirit of the law and, at best, an adherence to its letter. The Bill will put right the mistake of over 40 years ago by making it clear that consent must be obtained.

One issue that struck me in preparing for the debate was the importance of sensitive support for families at the time of bereavement. That picks up the point of the right hon. Member for Holborn and St. Pancras about the pressures on staff and on relatives and the emotions that emerge at that time. The report of the inquiry into children's heart surgery at Bristol royal infirmary identified the need to improve bereavement services in the NHS. That was covered in recommendation 12 of the CMO's report, which states:

It continues:

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However, the practice to date has been to ask relatives to authorise post-mortems shortly after death—in some cases, just after the news of death was broken.

Treating family members with dignity and respect and discussing complex emotional issues, such as post-mortems and the retention of tissues and organs, is difficult at the best of times, and I am told that it is poorly taught in medical training. Perhaps such training needs to be reviewed to ensure that it is the very best. Families need time to come to terms with their grief. When a post-mortem is suggested, unbiased information written in plain English and other languages should be supplied and support offered.

NHS trusts have been required to designate a named individual to act as bereavement adviser since 2000, so what is the current position in respect of bereavement services? The answer is that it is patchy: some are good, some are average, some are bad and some are developing. That is my reading of the results of the bereavement services report produced by the Department of Health following its survey back in 2001. That report's conclusion says:

The report's findings include the fact that fewer than half of NHS trusts had a dedicated member of staff to look after bereavement. Only 15 per cent. had a bereavement officer, and 20 per cent. said that they were doing well on issues relating to post-mortems and organ donation, while 7 per cent. said that they were not doing well. The report is silent about the other 73 per cent. of trusts. That should be a cause for concern.

Almost a third of trusts said that their provision of follow-up support and visiting needs much improvement. It is no wonder therefore that the CMO in his progress report on his web pages says:

To be fair, the Bill's explanatory notes state that £2.7 million per annum has been included in the NHS baseline to develop bereavement services in 2003–04. Of course that is welcome, but it remains to be seen how it will work on the ground.

The explanatory notes say that the funding is sufficient to develop services that will be compliant with the Bill. However, will that extend to developing the follow-up support and visiting services that are so important? Can the Minister say whether strategic health authorities will include the development of bereavement services in their performance management work? I understand that the Department is supposed to be undertaking a follow-up survey to find out how improvements are progressing. It would be useful to know the time scale for that work.

One of the reasons why I raise bereavement support is that it goes to the heart of how we ensure that appropriate consent is achieved. Bereavement services that provide support in a helpful, informed and unbiased way can help people to reach decisions more easily. I raise that issue in particular because of a case that demonstrates that bereavement services have a long

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way to go. It occurred over the Christmas period at the St. Helier hospital, which is part of the Epsom and St. Helier NHS trust.

The case was drawn to my attention by my constituents, Mr. and Mrs. Cornwell, who were visiting a relative of theirs, Mrs. Howe. They were rung by the hospital at 4 pm on 3 January and told that her condition was deteriorating and that they should come soon to see her. They visited and stayed until 7 pm, and they said their goodbyes. When asked, the doctor said that what was meant by the word "deteriorating" was that their relative was dying. They went home, which was very nearby, but they had no call from the hospital after that.

On Sunday 4 January, Mr. and Mrs. Cornwell decided to visit the hospital again, thinking that their relative was perhaps still alive—they wanted to see her again. They rang the hospital before setting out, and they were told by a junior staff nurse, after some discussions among the nursing and other teams at the hospital, that their relative had died at 9 pm the previous evening—two hours after they had left—and that they should contact the bereavement officer after 10 am on Monday. No information or counselling was provided and no suggestion was given as to what else they should do. They rang the bereavement office on Monday and told the person there that they had not been informed about the death, but had learned about it through their own positive action.

The office took the details and phoned back that afternoon to say that there was concern about the cause of death and that there would need to be a post-mortem. It did not inform medical staff that the relatives had not been informed and it told the Cornwells that they should go to the ward to collect their relative's personal effects. I cite what happened, because it is an example of how things can go wrong. Even when the relatives were told about the need for a post-mortem, no reference was made to the fact that forms had to be signed or to the issues that the Bill is all about. That is why the system must be improved.

To be fair to the trust, it has acknowledged that it made mistakes. In particular, it acknowledged three mistakes at a meeting that took place in my constituency this morning. The first was that, when the night duty nurse went to the ward on the Saturday, there was a misunderstanding from the duty nurse about whether the relatives had been informed of the death. A box was ticked, but there was no follow-up—not even when the relatives did not arrive and the body was moved to the mortuary. The bereavement office should have been informed by medical staff, but it was not. Therefore, it should not have told the Cornwells to pick up the personal effects. Finally, the trust did not provide all the information that it should have done to the Cornwells. It certainly failed to provide them with support.

The trust has acknowledged the mistakes and is putting in place procedures, but they should have such procedures now. If the interim procedure is already in place, it should inform how such matters are dealt with today. The fact that it does not is a great cause of concern for me and for others.

Transplantation is the second issue that I want to raise, and it has already been touched on in the debate. According to UK Transplant, the number of people

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waiting for organ transplants has increased by almost a third in the last 10 years. Today, 7,172 people need a life-saving or life-changing transplant. Every year, nearly 400 people die waiting for a suitable organ to become available. They are the ones lucky enough to get on the transplant list in the first place.

I understand from a press notice issued by UK Transplant that 10.9 million people have already pledged their organs for transplant by joining the NHS organ donation register. I can testify, having tried it out quite recently—perhaps having been stimulated by preparing for the debate—that it can take a matter of a few minutes, if that, to register one's intent to donate one's organs on death. I urge anyone to visit the website and to take the steps to doing just that.

One question that must be asked about the Bill is whether it will help to tackle the serious shortfall between the number of people awaiting donor organs and the number of people taking the positive step of registering their willingness to be donors. Planning for one's own death is still something of a taboo subject in this country. We do not like to talk about that or our mortality. That deters people from taking the positive step of recording their wishes to donate.

Polls have found that 70 per cent. of the population say that they are willing to donate their organs for transplantation after their death, yet just 15 per cent. formally register. One way—and I stress that it is one way—to bridge the gap between what people say they want to do and what they actually do would be to adopt a system of presumed consent. I stress that such a system of opting out would not mean that the views of relatives would be ignored, but it would change the nature of the discussion between the clinicians and members of the family that takes place at such a crucial point. The BMA briefing for the debate says:

The worrying thing is that the refusal rate is increasing, so what is the current state of public opinion on the question of presumed consent? A survey commissioned by the Department of Health in 1999 found that 50 per cent. supported the current opt-in system and that 28 per cent. supported presumed consent, with 21 per cent. having no preference. Since then, two further surveys found that concern about the availability of organs for transplants has led to a shift in opinion. The National Kidney Research Fund discovered that 57 per cent of the persons sampled supported a system of presumed consent. The BMA system would allow organs to be removed for donation after a person's death unless the individual had registered an objection during his or her lifetime; or if it were clear from information provided by the spouse or partner—or where there is no spouse or partner, by a parent or child—that the individual had expressed an objection to donation that had not been officially registered; or if it were clear that the donation would cause major distress to the individual's partner or, where there is no partner, a parent or child. The BMA makes it plain that that arrangement would not apply to persons under the age of 16. I do not pretend that presumed consent alone would solve the shortage of donor organs but it should form part of a wider strategy to increase donation rates.

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I recognise that the issue is one of conscience for many right hon. and hon. Members. If during the passage of the Bill there is the opportunity to debate and vote on a suitable amendment, I hope that it will be the subject of a free vote. I certainly welcome the indication by the hon. Member for South Cambridgeshire (Mr. Lansley) that such an approach will be taken by the Conservatives. My hon. Friend the Member for Oxford, West and Abingdon (Dr. Harris) hopes to catch your eye, Mr. Speaker, and to develop the arguments for presumed consent.

The hon. Member for South Cambridgeshire mentioned the problem of defining human tissue and organs—an issue that he raised in an Adjournment debate last April. The chief medical officer's report stated that "tissue" had not been explained in the past. In particular, it was not made clear that it could include whole organs, especially in small babies. Most parents thought that the term meant small amounts of tissue for microscopic examination. Informed consent would require clear communication and shared understanding. The Bill ducks that issue. Definitions of tissue and organs should not be left to guidance or codes of practice alone. I hope that the Committee will debate and arrive at a consensus to move that aspect forward.

The Royal College of Pathologists makes the point that while the Human Tissue Act 1961 is vague and misleading, the Bill is so tortuously worded that it will be incomprehensible to those who, under its regulations, will risk being exposed to penalties. The college suggests that schedule 1 should distinguish more clearly between activities for which consent would be mandatory and those not always requiring consent, as determined by the proposed Human Tissue Authority. I hope that the Minister will give some reassurances on that point when he winds up.

Those who remove tissue from living patients will be expected to seek consent for all subsequent uses of it. Persons working in medical education or research, for example, will need to ascertain the material's consent status. Does the NHS have the capacity to take on that additional work and cost? The Royal College of Pathologists states that to record the explicit wishes of all patients in a manner that allows laboratory staff rapidly to retrieve relevant information on large numbers of patients will require investment in information technology that cannot reasonably be funded from existing NHS laboratory or hospital budgets. It is estimated that 3 million solid tissue samples are taken from living patients each year. Is the Minister confident that existing resources are sufficient to put in place the necessary systems to implement the spirit and letter of the law?

If a doctor publishes a research paper in support of a hypothesis that includes pathological diagnoses culled from pathology reports, is a criminal offence committed if it transpires that in one of the cases, the consent for research box on the surgical consent form was not ticked? If an offence is committed, who commits it—the pathologist, the physician or the doctor who writes the paper?

The Bill deals with many public concerns about the way in which organs and tissues are removed, retained and used. It is a vast improvement on the 1961 Act and

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it should receive a Second Reading. It took almost 40 years before the weaknesses in the 1961 Act were exposed. The Bill is not the subject of party political dispute and I hope that that will liberate the Standing Committee that examines it and allow it to do a genuine job of revision and improvement.

Members of Parliament can never hope to make up for the pain and suffering of the Alder Hey families but we can ensure that their legacy is a sound system that safeguards individuals' rights to give their consent and respects the rights of the family.

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