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Friday, 14 November 2008.
The House met at ten o’clock: the CHAIRMAN OF COMMITTEES on the Woolsack.
Prayers—Read by the Lord Bishop of Newcastle.
Health: Donor Organs (EUC Report)
Baroness Howarth of Breckland rose to move, That this House takes note of the report of the European Union Committee, Increasing the Supply of Donor Organs within the European Union (17th Report, HL Paper 123).
The noble Baroness said: My Lords, a couple of weeks ago, I spent the weekend with a super group of children and their families where one child in each family had a serious heart condition. Many have hypoplastic left heart syndrome—they were born with half a heart—and, unless there is a miracle development in mechanical devices in the next few years, most will need transplants. They will then be competing with all those already on waiting lists and matches will have to be found in wider Europe—all that will happen in a very short time. Less than 20 years ago, such children did not survive at all. We have a responsibility, having got them this far, to ensure that they can look forward to full lives. Therefore, in introducing this debate, I declare an interest as patron and trustee of Little Hearts Matter. Although much of what I will say will be about policy and structures, let us not for a moment forget in this debate the human story behind every transplant.
Many of us remember the first human transplant, which was performed by Dr Christiaan Barnard in South Africa in 1967. Since then, the medical techniques required for successful organ transplantation have advanced enormously and it has become a widely used form of treatment. In fact, for cases of renal failure, the transplantation of a kidney is now the most cost-effective form of treatment and is probably preferable to kidney dialysis. Unfortunately, as we read in newspapers this morning, there is a severe shortage of organs available for transplant both in the UK and across the European Union. That is a serious public health problem with significant human and economic costs.
Across the European Union as a whole, 40,000 patients are on waiting lists for a kidney transplant. In the UK alone, 1,000 patients on transplant waiting lists are dying every year for lack of a transplant. The Chief Medical Officer for England has stated that others, who are not put on transplant waiting lists because doctors know that there is no hope of them getting treatment, are “dying silently”. In the UK, the organ donation rate lags substantially behind not only the best achieved in the EU but the overall EU average. Spain has by far the highest organ donation rate in the EU. With the aim of helping member states to address the shortage in organ donations, the European Commission has proposed the introduction of a directive aimed at setting standards for the quality and safety of
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Sub-Committee G of the European Union Select Committee undertook an inquiry into increasing the supply of donor organs in the European Union. We recommend that the Government support the work of the European Commission in raising the profile of organ donation across the EU and in seeking ways in which to reduce the shortage of organs for transplantation. However, although the conclusions of our inquiry lend support to the Commission’s proposals, we see it as most important that the proposed directive on the quality and safety of organs should not be overly bureaucratic. I ask the Minster for reassurance that the Government will do all in their power to ensure that the directive does not inhibit the application of expert clinical judgment and informed patient choice.
On the advantages of sharing experiences and best practice with other EU member states, which we hope will continue, we were most impressed to hear about the organisation of organ donation services in Spain from Dr Rafael Matesanz when he visited London to give evidence to us. He is director of the Spanish National Transplant Organisation and was responsible for introducing the changes to the Spanish system that led to the organ donation rate rising from 14 per million in the Spanish population in 1989—this is comparable with the present-day rate of 12.8 per million in the UK—to the current level of 35 per million.
During our inquiry, the idea was put forward that a switch in the UK from an opt-in to an opt-out—the method of presumed consent—for potential donors to indicate their consent could lead to a substantial increase in the number of organs available for donation. We asked Dr Matesanz what he thought about this idea. As we say in our report, his answer was clear. He said that,
Dr Matesanz and several other witnesses explained that a change in the law to put presumed consent in place in Spain had been made 10 years before donor rates started to increase. What made the difference was the reorganisation of donor and transplant services, which started in 1989.
We therefore welcome the work by the Department of Health Organ Donation Taskforce to study the case for introducing presumed consent in the UK. We valued its earlier work but, pending the outcome of this study and on the basis of the evidence that we heard during our inquiry, we do not believe that a convincing case has yet been made for an immediate move to a presumed consent system in the UK. One of the most important conclusions of our report follows from this. In order to increase the number of organs available for transplantation in the UK, we urge the Government to make one of their top priorities in this area of endeavour the implementation of a major restructuring of organ donation and transplantation in the UK.
We also draw attention to the key role that has been played in improving Spanish organ donation rates by the priority given to the selection and training of staff
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Of course, the number of organs needed for transplantation could be limited if some of the diseases that lead to organ failure could be prevented. We heard most persuasive evidence from Dr Gurch Randhawa about the urgent need to introduce information and other schemes among the black and south Asian communities in the UK to help to prevent kidney disease. Dr Randhawa explained, as background to his views, that as many as 23 per cent of people on the waiting list for a kidney transplant come from our black and ethnic minority communities, even though these groups account for less than 10 per cent of the total population.
It was also clear that in this area we could learn from one another across Europe. Dr Anthony Warrens, commenting on the low rates of organ donation and take-up among ethnic minorities, said:
“There may well be very great differences between Edinburgh and Athens, but poverty may bring with it shared perceptions or shared feelings of alienation”,
in using services. He also thought that wider social research across boundaries would bear more fruitful results, so we recommend that the Commission encourage collaboration on the conduct of research and the sharing of results, particularly on the attitudes to organ donation in different population groups.
We received a considerable amount of evidence for our inquiry from faith and belief-based groups, to which organ donation issues are of great interest. We found that, although specific issues concerned some groups—notably about donation after death diagnosed by brain-stem death testing—most groups saw decisions about donation as a matter for individual conscience. Nevertheless, we see great advantage in the Government and other agencies working with faith groups and local community groups to clarify and communicate organ donation issues. In particular, we would like such communities to be much more actively engaged in helping to achieve the goal of increasing organ donation rates.
I also draw attention to donor cards and the donor register. I wonder how many noble Lords carry a card. If they do not, do they know where to find one? There is a high rate of public support for donation—it is somewhere around 90 per cent—but, in practice, less than 25 per cent are on the organ donation register. Mr Chris Rudge, managing director of UK Transplant, expressed regret that his organisation had only a limited budget for promoting the register. Yet again, perhaps there is something to be learnt from other EU member states. In the Netherlands, the register provides three options: agreement to donate organs, disagreement or leaving the decision to a relative. Forty per cent of the Netherlands population is on the register. On the
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Other members of our committee will focus on important areas that I have not had time to cover, such as the value of patient and family care, living donation and data needs. The committee was assiduous throughout its questioning and many of us changed some of our views when faced with the evidence. The inquiry showed yet again the value of looking across Europe when considering these important issues. We were grateful that so many expert witnesses came to share their knowledge and we thank the Government and the Commission for their responses and for taking our report so seriously. I look forward to hearing the Minister’s reply and I beg to move.
Moved, That this House takes note of the report of the European Union Committee, Increasing the Supply of Donor Organs within the European Union (17th Report, HL Paper 123).—(Baroness Howarth of Breckland.)
10.18 am
Baroness Morgan of Huyton: My Lords, I shall talk briefly about families. The role of the patient’s family is crucial when trying to increase the number of organs available for transplant. As a member of the committee, I was struck when listening to the evidence by the range of organisations that felt, regardless of their position, if any, on presumed consent—the subject of current debate in the UK, as we saw in the newspapers this morning—that opposition from family members to donation was paramount, regardless of the law. For example, the BMA, which argued for a change in the law in the UK to presumed consent, also welcomed the changes in the Human Tissue Act 2004 and the parallel law in Scotland that means that where an individual has given prior consent to donation, relatives have no right of veto.
However, despite that, the BMA still believes that from a practical and a caring perspective, it is right that such legislation is permissive. In other words, it would be counterproductive to proceed against strong and sustained family wishes. It may damage the donor programme and cause great harm to bereaved relatives, to whom medical staff also have a duty of care. The BMA therefore argued for an emphasis on training for transplant co-ordinators to help bereaved families to respect the views of the deceased who have expressed a wish to donate organs.
Similar views were put by the Cystic Fibrosis Trust, which also is in favour of a change in the consent position. But it clearly said that it has,
- “grave reservations about taking organs from a brain dead patient if their family is vehemently opposed to this process. We feel it would be counter-productive and would cause considerable ill will, which is likely to harm the transplant programme more than it will help it”.
Much has been heard about the model transplant service in Spain where there is a law of presumed consent. But, as we have already heard, the head of Spain’s transplant services felt that the law was not significant in terms of the increase in the number of
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- “every year we train about 300 or 400 people in all aspects of organ donation—potential donor identification, maintenance of the donor, how to approach the family, how to distribute the organs”,
which seems to be of crucial importance, but often is insufficiently recognised.
That view was verified by, among others, Dr Rudge of UK Transplant and Professor Brazier and Dr Quigley of Manchester University, who have done a substantial study. In their evidence, they stressed:
“It was the introduction of an organisation to coordinate all aspects of donation activity, the ONT, which made the difference. Donation activity is coordinated at national, regional, and local levels, with highly trained and qualified physicians taking on the role of transplant co-ordinators and being responsible for ... donor detection and approaches to families”.
Again, specific training on how to deal with distressed relatives was highlighted.
On listening to the Spanish evidence, it was clear that separate resources were necessary to focus on relatives before and after taking the decision, and not simply moving on once the decision has been made and leaving the bereaved bereft and alone while the organ removal takes place. A separate team should remain with the relatives throughout the whole process.
Two major areas of work have emerged from the UK. We know that about 90 per cent of the population say that they are willing to donate organs after their death, yet only 23 per cent are on the donor register. For those who are not on the register, about 40 per cent of relatives refuse permission. We also know that only a small proportion of possible donations are even identified in UK hospitals at the time of trauma.
The first major issue is the organisation of our donor system and the major lessons to be learnt particularly from Spain, which I know will be the subject of other contributions today, so I will not repeat those arguments. The second issue is education and awareness. While there will always be some relatives who argue against the known wishes of their deceased family members, many more would agree to donation if they understood its importance and were clear about their family member’s wishes. Usually, that cannot happen in a time of crisis.
I wonder how many of us here have signed the donor register, as well as carry the cards that we have heard about today. It occurred to me that we probably should have arranged for a pile of donor cards and a computer outside the Chamber. When I thought about this issue, I wondered whether a routine question about holding a donor card is asked, for example, by receptionists in GP surgeries when one turns up for an appointment. In most places, it probably is not. Are donor cards displayed always at pharmacy counters and is the question asked? I think that the answer is that it is largely not asked.
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In what other routine ways can organ donation be thrust in front of us? Between 1999 and 2004, a successful scheme ran alongside electoral registration, but it was stopped by the Electoral Commission as contravening the representation of the people regulations. It cannot be beyond our wit to find a way to amend the relative statutory instruments. It was an extremely successful experiment, which was stopped for regulatory reasons rather than because people thought that it was wrong.
Is donation addressed significantly in schools so that children grow up aware of the issue, understanding the consequences and, we hope, reaching the views expressed by the doctors in Spain? They said:
“Our philosophy is that everybody should donate because everybody can receive”.
That may be common sense, but it is not an attitude that prevails in Britain.
Finally, will the Minister set out today or in the future plans to improve the impact of educational awareness programmes in Britain in order to avoid the at best fairly patchy approach that still tends to be present?
10.26 am
Lord Sheikh: My Lords, I have taken a close interest in organ donation for a considerable time and I welcome the report of the European Union Committee. Inevitably, this is a matter of concern to the public and, as highlighted by the committee, is more complex than the simplistic terms in which it is often presented. The last opportunity that we had in this House to consider this issue was earlier this year when the noble Baroness, Lady Finlay, introduced the Kidney Transplant Bill.
Undeniably, there is a shortage of organs for transplant in all countries across the European Union. The European Commission's communication of May 2007, which established a directive to define standards for the quality and safety of organ donation and transplantation across the European Union and an action plan, was, unquestionably, well intentioned. Around 7,500 people are waiting for an organ transplant in the United Kingdom, with almost 400 people each year dying while awaiting treatment. Across Europe, this is estimated at around 40,000 people, which, by any measure, is a large number. Tragically, this includes nearly 100 children each year. These figures do not include those who would ordinarily benefit from the procedures, which would run to many thousands more people. It is apparent that the scale of human suffering caused by the shortage of organs is profound, as many people face pain and ill health while on the waiting list.
The problem is not one of willingness to donate. The number of people willing to donate their organs far exceeds the number who have completed organ donor cards. Notwithstanding that, we donate, per million of the population, only one-third of the number of organs donated in Spain and around half of that in Austria, France, Belgium and the United States. Our donation rate lags well behind the average across the European Union. It is clear that we need to do more, but a system of presumed consent is not the answer.
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As a consequence of family refusals, around 40 per cent of those who have an organ donor card do not donate their organs. The context, therefore, for organ donations in this country is a problem, fundamentally, of infrastructure and organisation rather than just a matter of presumed consent. That was the conclusion in the report published in January this year of the Government’s own Organ Donation Task Force. The target of increasing donation rates by 50 per cent in five years is worthy of support and I wish the task force well. Given that the Government accepted the recommendations, I hope that the Minister can provide an early indication of what progress has been made.
I am uncomfortable with the issue of presumed consent. The state does not own our bodies and it should not have the right to take organs after death. Organ donation must be achieved without causing offence or distress to the family of the deceased, and should be established on explicit consent. If we are to make progress, we need to enhance organ retrieval teams in hospitals and appoint more donor liaison nurses in order to improve the alignment between those who express a willingness to donate and those who ultimately provide their organs.
During our debate on the Kidney Transplant Bill, I recorded my concern at the very low level of organ donation among ethnic minority groups across the United Kingdom. Different religions take different approaches to organ donation, but none of the five major religions objects to the principle. More needs to be done to increase the numbers among minority ethnic groups who donate their organs. I should be grateful if the Minister could provide a specific answer to what is happening on this front.
The committee concludes robustly against the sale of organs, and I agree that the trafficking of organs is a major problem, particularly as it often affects the vulnerable and weak in the countries that bear the pain of this hideous behaviour. This is an issue that has a particular currency on the Indian sub-continent.
What impressed me most in the committee’s report was the evidence provided by Dr Rafael Matesanz, who has been responsible for a magnificent achievement in devising and implementing significant improvements in the supply of organ donations in Spain. I salute the expertise that he offered, and how the committee presented his coherent and beneficial evidence. We cannot escape the reality that the retrieval of a donated organ needs to take place within twelve hours of death. It is clear from the report that there is not sufficient infrastructure to enable the retrieval and use of organs to meet demand, even under a system of presumed consent. We do not have the organisation in this country to address the demand for organs, and that will not be resolved by introducing a system of presumed consent.
The European perspective is another area in which I should like to address some remarks. There is limited value in establishing a pan-European organ donation sharing system. In most cases, domestic demand far exceeds supply, and in only a very small number of cases would it be practicable. I agree that there is some advantage in the establishment of a number of minimum
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In drawing my remarks to a close, I welcome the conclusions of the committee’s report and congratulate noble Lords who have done such thorough work in this important area. I particularly look forward to hearing from the Minister how the Government propose to increase public awareness of and participation in organ donation schemes; what progress we can expect in developing the infrastructure and organisation to cope with the increased supply that we all want to see; and what action they will take to ensure that effort is focused on those ethnic minority groups where at present there is a shortage in participation.
10.35 am
Baroness Neuberger: My Lords, in declaring an interest I start by apologising to your Lordships’ House. There are an awful lot of Neubergers and Newbergers about, and we are all related. My brother-in-law James is about to become the next head of UK Transplant, so it is a real interest of mine. I also declare an interest as an honorary fellow of the Royal College of Physicians and the Royal College of General Practitioners.
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