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 organ donation and transplantation across the Union. It has also set out an action plan for closer co-operation between member states in sharing experiences and best practice.
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,
"opting-in, opting-out in my opinion means nothing".
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 involved in these services. A particular technical aspect of the organisational changes that need to be made is that brain-stem death testing needs to be offered for all patients in whom brain-stem death is suspected and who may become an organ donor. We understand that this is under consideration following the work by the Academy of Medical Royal Colleges and ask the Minister where discussions have reached on the new guidance.
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 other hand, there was little enthusiasm for a Europe-wide donor card; this should be more nationally based. I ask the Minister what plans there are to promote the register and donor cards in the UK.
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.)
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 donors. He explained that the importance of the multi-disciplinary nature of the services involved in organ donation was crucial and that, since the new system was introduced, a great deal of effort and most of the budget had been devoted to training doctors, nurses and all other professionals involved in the system. When the head of Spain's transplant services gave evidence, he said that,
"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.
"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.
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?
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.
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 common standards, but that is probably the extent of the value-added that we can expect from the European Union in this area. I entirely agree with the committee's rejection of a pan-European donor card. Given the excess of demand in all European countries, it is hard to imagine where the value-added could be found, let alone the problem of identity, which may restrict people's engagement on a European level. The Government should do more to encourage people in this country to sign up to become organ donors, but that is unlikely to work across the Union.
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.
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.
Our work in EU Sub-Committee G on increasing the supply of donor organs within the EU was among the most interesting I have ever been involved with during my time in this House. I want to pay tribute to our clerk at the time, Barry Werner, and to our present clerk, Kate Meanwell, for her valiant efforts in getting for us in advance of its publication the report of the Organ Donation Taskforce on presumed consent from the Department of Health so that we might have a look at it before today's debate. She did not succeed, but the Times appears to have done so, as we have read this morning. I want also to pay tribute to our special adviser, Bobbie Farsides, who was very helpful. Lastly, I am sure that all members of Sub-Committee G would like to pay tribute to the noble Baroness, Lady Howarth. She was a magnificent chairman and we heard fascinating, though sometimes difficult and distressing, evidence.
I want to talk about one specific area among the many, and it is one that we have already heard quite a lot about: the organisation of transplantation and donation services. We heard superb evidence from many people, but that given by Dr Rafael Matesanz, who has already been mentioned by the noble Baronesses, Lady Howarth and Lady Morgan, stood out by showing that organ donation rates really can be raised, even in unlikely areas. As we have heard, at 35.1 donations per million, Spain takes the lead in Europe on the number of organs donated. Estonia comes in next at almost 27 per million, followed by Austria, Belgium, France, the Czech Republic, and on down to the UK at a tiny 12.8 per million. Why is that? Dr Matesanz was absolutely clear with us, as he has been in the pages of the Times this morning: it is organisational.
The way in which health services are organised and delivered, including organisation and transplant services, are matters for individual states, and the European Commission does not have a role in legislating or setting down guidelines, but the Commission's proposal for an action plan to strengthen co-operation between member states on organ donation has rightly received considerable support. Such co-operation would include sharing information about what aspects of organ donation and transplantation services work best in order to raise donation rates. That is why we looked at the organisation of these services in Spain and in the UK at a time when the Department of Health Organ Donation Taskforce—chaired by Elisabeth Buggins, who presented us with superb evidence—was under way. We have seen some of what the report is likely to say in the Times this morning. That is also why Dr Matesanz's evidence was so compelling. I should like to quote some short extracts because the material is so significant.
Dr Matesanz made it clear that presumed consent had already been in place in Spain for 10 years when it started reorganising these services. He said:
"We started because the situation in Spain was not really satisfactory—the organ donation was 14 donors per million population", which is higher than ours is now. He went on to say that,
"the main figure of the system is the hospital coordinator, which is a medical doctor that makes a big difference with what is happening in Central Europe, the UK and in the USA and in many other countries. We looked for, let us say, a clinical champion, a medical doctor with clinical authority inside the hospital, just to look for the potential donor and just to have an exchange of ideas and an interface with people in the intensive care units or with transplant teams or with many other actors that are involved in organ donation and transplantation".
He went on to make a point which has been emphasised by the noble Baroness, Lady Morgan, saying that,
"we dedicated a great effort to the training of medical professionals and also of the nurses. You should realise that we started only 1991 and every year we train about 300 or 400 people in all aspects".
So they have now trained between 4,000 and 5,000 people, with the result that the situation has changed completely. But he also laid great emphasis on the fact that the system is multidisciplinary.
That was Dr Matesanz from Spain but he was not alone. He was strongly supported by the head of UK Transplant, Dr Chris Rudge. In a society where apparently 90 per cent of the population support the principle of donation but only 25 per cent are on the organ donor register—and I absolutely agree with the noble Baroness, Lady Morgan, that we should get everyone to sign the register as we leave the Chamber today; but we have not managed to get that organised—Chris Rudge was adamant in his evidence when asked,
"Could we carry on and change things?", that, yes, we could. He said:
"The key is in the assumption that appropriate funding will be made available. If that were satisfied, yes I do believe UK Transplant ... has the potential to expand its role".
"it is all to do with the Spanish model really and that the organ retrieval process, the surgical retrieval of organs is optimised. There is a whole series of steps. Each step can be improved. Do I think it can all be done? Yes, I do".
Dr Rudge then said that he was rather embarrassed because he writes many academic papers with Dr Matesanz and they always start with Dr Matesanz explaining the Spanish model and how good it is, and then he has to explain the UK model and how bad it is. He was a little distressed about that. However, he also pointed out that the law in Spain is exactly the same today as it was in 1989 when it had the same organ donation rate as Britain has today, and that the changes—the threefold increase in organ donation—have occurred without changing the law. He was absolutely clear about that. So it is quite clear: Chris Rudge, head of UK Transplant, thinks that it is about organisation and funding, not about changing the law. The committee debated the CMO's proposals for an opt-out; but what seems to matter is organisation rather than law, and cross-European Union information also is clearly helpful. According to the front page and leader of today's Times, that is what the report of the Organ Donation Taskforce will say when it is published.
The Government have already said they accept all of the UK Organ Donation Taskforce's recommendations published in January 2008. Of the 14 recommendations, at least eight covered organisation, ranging from the establishment of a UK-wide organ donation organisation to a huge amount of clinical training. Elisabeth Buggins, chair of the task force, told us in terms that the Government were giving full funding to support the implementation of these recommendations. That was very welcome to us.
Some questions remain, however, and I hope the Minister can address them. First, how far have the Government got in the past few months in advancing these recommendations? Secondly, does she accept Dr Matesanz's view that it is not the law that needs changing but organisation and leadership? Where does that leave us on presumed consent versus the present system? That is particularly important given the point raised by the noble Lord, Lord Sheikh, about the varied views of religious and ethnic groups within the country. We looked closely at that issue.
Thirdly, will the Minister comment on the question of the culture in this country, and whether it is a cultural issue which ultimately stops us giving our organs? A part of Dr Matesanz's evidence was extraordinary in regard to British people in Spain. If it is true that we have such a low donation rate in this country, how can it be that Dr Matesanz was able to tell us that,
"in Spain we have the data for 2005 and 2006 and we know that there were more than 100 to 120 British who came to the state of brain dead and it is very curious because all say ... British who were asked in Spain finally say yes. So the family refusal rate of British in Spain is zero. What is important in this situation is that you cannot change the mentality of the whole country; that is impossible—you need many, many years, many, many actions and so on. You should concentrate the thoughts of what is happening specifically at the moment when a person becomes brain dead in the intensive care unit, and you should have a very good trained professional who is trained in a very professional way"?
They all say yes if they are in Spain but, curiously, if they are here they do not. It will be good to hear what the Minister has to say about that because that is an extraordinary reflection, not on culture but on organisation. This is really important for us to think about.
Fourthly, and substantively, given the varied views of religious and ethnic groups within our society and the recommendation that we made in the EU Committee's report that the European Commission should encourage member states to collaborate on the conduct of further research, and on sharing the results with a view to developing appropriate action, into the extent to which views based on affiliation to a faith group may affect the decisions of potential donors and donor families and the attitudes and behaviour of relevant healthcare staff across the EU, can the Minister tell us the extent of government support for this kind of research and sharing of information? The government response merely said that the Government are keen to work with the Commission and other member states on issues to do with cultural, educational and economic factors and family refusal rates to do with ethnic and cultural aspects, but they did not respond at all to the specific recommendations on faith groups. They merely suggested maintaining the dialogue led by Professor Gurch Randhawa—who gave superb evidence to the sub-committee—"possibly over many years".
The Government seem broadly sympathetic to the recommendations of the EU Committee, but it would be good to hear the Minister discuss the specifics and reassure the House that the recommendations will be acted on; and it would be good if they would take to heart the task force's conclusions as reported in today's Times and not rush ahead with the diversion of presumed consent, but instead concentrate on organisation.
My Lords, like others, I warmly congratulate my noble friend Lady Howarth of Breckland and the EU Committee on their outstanding report. Today's debate is proving very timely.
One of the most striking sections of the report is the table of member state donation rates, on page 15, which makes fairly uncomfortable reading for those of us in the UK who have an interest in organ donation. Sixteen European countries have a higher donation rate than the UK, and we must face the barriers that are preventing us achieving high donation rates, put forward solutions to those barriers and mobilise those solutions.
The report makes important recommendations. We must raise the profile of organ donation so that the donation rates approach the expressed support that comes from 90 per cent of the population. Currently, apparently, 26 per cent are on the donor register, so perhaps it has gone up by 1 per cent since the report was published. The Government have pledged £4.5 million over the next two years, but can the Minister specify how this will be spent? Will there be advertising campaigns portraying the positive impact on recipients and their dependants, particularly their children, who have been given the gift of life thanks to an organ donor? There is strong evidence that bereaved families are consoled by knowing that someone has been able to live as a result of receiving a new organ. Indeed, even those who refuse to donate do not regret having been asked, but those who were never asked regret for ever that their loved one's organs were wasted. Some years ago, my paper, Your Child is Dead, in the BMJ, reported this view from bereaved parents.
At first sight, the committee's recommendation to increase donation rates over the next five years seems vague and obvious; its beauty lies in its realistic simplicity. The target is set and must be met. The Government have already signalled their intention to see this achieved by making a firm commitment to accepting the proposals of the recent report from the Organ Donation Taskforce, which estimates that its recommendations would increase donation by 50 per cent in five years. If achieved, it would be a significant step—but only a step. Like all great journeys, it must be followed by one step and then another. If we are to see the day when donation rates increase to such a level that the supply of well-matched donor organs meets demand, there will be a need for many more steps on this road.
Let us be clear about the size of the task ahead. We have already heard that 7,957 people are on the organ donation waiting list, and that number is increasing at a rate of 7.8 per cent each year, faster than the pace at which the organ donation rate is rising. Last year 1,000 patients died while waiting for a donor or having become too ill to receive an organ. Unfortunately, this stark picture does not reflect the true scale of the problem as it does not include the growing number of patients who are in need of a transplant but are not even put on the waiting list because, as the Chief Medical Officer said, there is "no hope" of them receiving a donor organ. So we have to increase the number of organs available to meet the needs of the patients that we know about, as well as those we do not.
What about organ donation champions in each hospital? When do the Government plan to have a donation champion in every UK hospital? The task force, according to today's Times, are reporting next week against presumed consent. Is that leak correct? Why were the press informed ahead of this House?
Presumed consent divides opinion. The Government are right to consult on it before making a firm decision. During the Second Reading of my Private Member's Bill, the Kidney Transplant Bill, the Minister stated that it was premature to legislate on the issue. Indeed, that is why I have not pressed my Bill. Presumed consent was advocated in the Chief Medical Officer's report in 2006 and, as has been stated, the British Medical Association favours a "soft" presumed-consent system to respect the views of relatives, either because they are aware of an unregistered objection or because it would cause major distress to close relatives. There would be clear requirements that all relatives were consulted before organs were removed.
As the noble Lord, Lord Sheik, said, the Bill I introduced during this Session contained a system of presumed consent for one kidney only. The reason for restricting it to one kidney was to avoid the controversy around donating faces, gonads and so on. My intention was that, once a conversation had taken place, the clinical transplant team would discuss one kidney and then go on to discuss other organs—it would force the conversations to happen. Following wide consultation with all of the leading transplant groups, as well as having listened to the concerns of noble Lords during the Second Reading debate, I resolved to amend the Bill so that it introduced a softer system. In consideration of the then upcoming task force report I decided to delay, but I remain convinced that we must take action to improve transplant services in the UK.
There must be infrastructural changes too, as the Chief Medical Officer stated in his evidence. Once steps have been made to increase the supply of organs, hospital trusts must be well equipped to handle the increase. It would be a tragedy if we saw the numbers of organs increase but then go to waste because the infrastructure was not in place to deal with them. Part of that organisational change must include, as I have already said, organ donation champions working closely with the task force.
Society's conversation around death and dying must include the need to make a will, including considering organ donation—for no one will escape death. The causes are various but death is universal. That is why I also want to address death certification. There seems to be confusion among some healthcare professionals, as well as among the public out there, over the certification of brain-stem death. The EU report discusses brain-stem death testing and recommends in paragraph 261 that such testing should become standard practice for all patients in whom brain-stem death is suspected. I strongly endorse that recommendation. Last year 573 heart-beating donors were brain-stem tested, and that resulted in 2,052 organs being transplanted. Brain-stem testing involves two specifically trained consultants who each test the patient twice. There is a standard battery of tests, and there are established criteria that must be fulfilled prior to testing. I am grateful to Dr Doris Doberenz at Charing Cross Hospital who kindly went to a lot of trouble to share all the details of modern practice with me. She explained that when the family of the patient are present and they witness the testing, it can help them come to terms with the loss of a loved one and help them understand the process prior to donation. If brain-stem death is confirmed, the time of death will be recorded as the time at which the first test was carried out and a death certificate issued after the last test. If the death is referred to the coroner, the death certificate is issued by the coroner after the inquest, but that does not prevent transplant proceeding.
Introducing brain-stem death testing as standard practice would open the door to a potentially large increase in donor organs, and I urge the Government to consider this. I also hope that data from all brain-stem death testing will be collated on a central register to provide data on outcomes, organ viability and problems encountered.
Some people have raised concerns that continued ventilation after the diagnosis of brain-stem death is not in the patient's best interest. After death, the person has ceased to exist. They are now dead. The only person now who has an interest in those organs is the recipient, and short-term ventilation perfusion maintains organs in an optimal condition for transplant and fulfils the best interest of the recipient. I fear that confusion about personhood may have been a bar to some in proceeding with organ retrieval. Let us be clear. After brain-stem death, even with ongoing ventilation, irreversible cardiac arrest occurs within hours or a few days at the most. It is important to be absolutely clear that brain-stem death is completely different from persistent vegetative state and respiratory centre syndromes. After brain-stem death, the person is dead. It is irreversible.
The noble Baroness, Lady Morgan of Huyton, alluded to education overall. I shall briefly address education programmes in hospitals for all staff, including ancillary and management personnel. Perhaps some of these programmes could even be run by organ recipient groups. I note that the Government's response to the EU Committee report states that they are actively considering the introduction of community-based initiatives in the UK to help promote organ donation and encourage a higher level of consent. Can the Government see the logic of extending these initiatives to hospitals for the benefit of NHS staff? They often encounter relatives, and a small non-verbal signal can encourage or discourage them as they are thinking about organ donation.
This important report must not gather dust. It must gain momentum.
My Lords, I, too, congratulate the noble Baroness, Lady Howarth, on producing a report that is clear, readable and to the point. I hope I can do half as well in the three short points that I want to make.
First, the report describes all the issues you need to take into account in improving transplant services, but it pulls out one as the top priority: to implement the reorganisation of organ donation and transplantation services. That must be right. Raising public awareness and so on will be redundant without that. I am not going to say any more about that because it has been dealt with so effectively by the noble Baroness, Lady Neuberger, and others, but the Government's response to the report did not draw out that point—it did not specifically recognise that it was the top priority. It would be good to hear what the Minister has to say in response to that.
Secondly, I want to talk about the whole area of culture, as it affects staff and public awareness. Cultural issues must be central to the organisation of the transplant service—cultural in terms of being able to deal with everyone, whatever their ethnicity, religion, behaviour or traditions. There are some key points here. There are low rates of donation and high needs in certain groups in our society. As some of the people giving evidence to the committee said, staff do not know enough about how to deal with these things.
That is certainly part of the solution, but these points draw attention to a bigger issue that is relevant to the whole of the NHS and our society as a whole, and which cannot be addressed merely in the transplant context. It is also about how groups in our society feel about the NHS. There is some hint in the report and some discussion about alienation and inequality having a bearing on whether people put themselves forward to become donors, but I would like to make that point much stronger. When I was chief executive of the NHS, I argued that having greater race equality in the service was about health. It is, of course, a moral and a legal issue, but fundamentally it is a practical issue. If you are responsible for improving the health of the whole population, you need to address minority needs and the different cultural needs. I was very conscious that staff and patients in black and minority ethnic groups within the NHS were less satisfied than the majority population. We were not succeeding in making them feel that the NHS was there for them in the same way as it was for other people, and it interfered with our ability to improve health.
My second point, which is very simple, is that the committee, the European Union and the task force have been right to identify this important issue in securing more organ donors. They are right to draw out the point that greater sensitivity in handling this is needed by staff. However, you cannot expect to make this small group of staff supersensitive without others in the NHS also changing. You cannot expect minority communities to recognise cultural sensitivity in this area if it is not there in others—it will not work. This is not a problem that can be addressed purely in the transplant context. In taking this forward, the Government need to recognise that and think about the wider context of how people view and relate to society and to the NHS.
My third simple point is very different and concerns the specific subject of heart transplants. I note, if my figures are right, that at the high point there were about 400 heart transplants a year, and that last year there were fewer than 150. Actually, 500 hearts were offered for transplant but most were not considered suitable. Experts tell me that part of the problem is getting what one might call good quality organs. Of course, this is good news; the fact that fewer hearts in good condition are coming forward is partly due to things such as seatbelt legislation. However, that prompts me to ask about alternatives to transplant, a subject that is touched on in the report only very briefly. Some people will have heard—and some in your Lordships' House will understand this very well—that alternatives are being developed in, for instance, artificial tissues, stem cell research and artificial support for hearts.
Artificial devices have been around for some time. The UK is a pioneer in this area; the report says that there is a need for research, and we need to get on with doing it. Let me illustrate that with the example of Professor Westaby, a surgeon in Oxford. Using a very simple device, he has kept a patient alive for more than six years. It is a little pump that is put into the base of the heart, attached to a battery which the patient keeps on his waist. A patient who was all but dead survived for a further six years in pretty good health by using this device.
Sometimes people talk about artificial hearts and devices of this sort as being a bridge to transplant and ask why they are not used just to get the patient through until a new and good heart is available. That is certainly one route. Sometimes people talk about them as a bridge to recovery, and there are examples of their being used in that way. There have been cases where people have had these devices implanted, their heart has recovered from the infection or whatever problem they had and they have then been able to have the device removed and carry on as normal. There is also a case for using these devices as destination therapy, as an alternative to transplant. The evidence is starting to build up.
Let us look briefly at the advantages. There are some very obvious ones, the first of which is that you do not need dead people. The second, equally straightforward, one is that fewer and rather different ethical issues are involved, with fewer or no complexities. Thirdly, there is no continuing rejection issue: people do not need to take anti-rejection drugs in the long term. The cost is higher at the moment, roughly twice as much—a transplant is £40,000 and one of these devices costs £80,000. But the revenue costs in the longer term of keeping somebody alive will be less, not least because the cost of recharging batteries is less than the cost of the anti-rejection drugs.
Against that background, and although this is only partly referred to in the report, I urge the Minister to take on board the very simple point that we have a solution that may have high potential but has not yet been properly researched and is in an area where the British are at the forefront. I urge her department to do much more research and development on this important issue.
My Lords, I, too, thank my noble friend Lady Howarth not only for leading this debate but for her able and perceptive chairing of EU Sub-Committee G, which was particularly important for me, as a newcomer to House of Lords committees. All of us on the committee learnt a great deal about this important and very complex area from the expert witnesses and written submissions. It was crucial for us to gain an insight into the British context which then, in turn, informed our approach to and formulation of questions regarding the current European situation and how we might respond to the draft EU proposals.
One of the areas about which we had considerable concern, as noble Lords have already stated, was that of what we call black and minority ethnic patients and donors. These are sensitive issues, because without a full and sophisticated analysis of the various factors involved, the impact of analysing the problems may be negative and counterproductive. Indeed, we could end up further stigmatising some of the groups or communities already existing on the margins of society and feeling alienated from it. I want to unpack some of these issues and, in doing so, support some of the points that have been made, particularly by the noble Lord, Lord Sheikh, and my noble friend Lord Crisp.
In summary, roughly 25 per cent of those on the organ donation register come from what is described as a black or minority ethnic background. That is a much higher percentage than that in the general population. Additionally, donors from such backgrounds account for a very small proportion of the organs transplanted in the UK and relatives from these communities are much more likely to decline the use of organs from deceased relatives. This matters, because, generally speaking, it is important to obtain as close a match as possible between donor and recipient to minimise risk.
We were concerned on the committee to identify the nature of the factors which lead to substantial numbers of black and minority ethnic people needing transplants in the first place and to gain the sense of the barriers preventing these communities donating organs. This latter point is particularly important in the context of the debate about adopting a system of presumed consent, or opt-out, with regard to donation. I shall not repeat the remarks that several noble Lords have made about that system and the importance of the Spanish model, except to say that not only was the infrastructure considered to be important in raising the number of donations from people in Spain but so was talking to families and communities before the crisis or the need arose and making sure that the various communities in the country could relate to the real meaning of this very public service.
We now know that there is a growing body of evidence suggesting some of the issues for black and minority ethnic communities which we urgently need to address. With regard to the factors that lead to higher incidences of the need for organ transplantation, it seems clear that genetics, diet and lifestyle may together and/or separately play a part. The barriers that prevent donation are rather more complex to unravel. One of our recommendations grew from a sense that although issues such as religion, level of educational attainment and social class may play a role in the lack of BME donors coming forward, we also need to consider wider experiences of racism and inequality in our health services. For example, it may surprise some noble Lords to know that there are still some black people who remember that in the 1960s, their offers to donate blood were refused, and others who have encountered very poor treatment and discriminatory experiences within the system.
These intersections of characteristics, such as social class and level of education, apparently make a difference. There is also a difference between male and female donation rates in the general population, which may also be reflected in black and minority ethnic communities. It seems that we know too little at the moment to have a clear sense of the factors and barriers, particularly across the EU in general.
There is often a temptation to reach for religion or faith as a reason for low rates of organ donation among BME communities, because it seems tangible and able to be understood and addressed. However, as non-clinical lay person, and a member of the APPG on humanism, I think that that approach can be problematic for a number of reasons. First, it assumes a homogeneity of approach within a religion when it is clear that there is not. In other, perhaps even more controversial areas of medical practice such as abortion and euthanasia, there is no real consensus within, for example, the Christian church. Individual interpretations abound, and even though each of the major religions in the UK has endorsed the practice of organ donation based on specific interpretations of teachings, there are still those within the religions who hold a different view. That applies in the general sense, and it would be similar also in BME and non-BME communities alike.
Although there is evidence to suggest that substantial numbers of people from BME communities characterise themselves as devout or at least believers, many do not. I would be interested to know what, if any, evidence demonstrates a correlation between not holding a faith or religious belief and registering for organ donation among those communities.
For these reasons, we separated in the report ethnic and cultural aspects from the views of faith groups, although there is some overlap. All in all, it is essential to develop a much more sophisticated approach to identifying these issues, and not to homogenise the communities about which we speak. There are vast cultural differences within and between them.
Evidence comes from rigorous research. We found little knowledge of such research in this area if it exists. There is apparently a lack of knowledge about this matter on a pan-European basis, yet there might be plenty to learn from initiating extensive, detailed studies across the EU of the barriers that prevent registering as a donor. There are minority groups of one kind or another throughout the Continent. Is the pattern of the UK's experience repeated elsewhere? We were not able to find a definitive answer to this and other related questions, hence one of our recommendations is that the EU should encourage member states to collaborate on research and share results so that appropriate solutions may be developed.
There are in the UK a number of organisations which specifically target BME communities, encouraging them to articulate their fears and anxieties, and to ask the questions that will help them to understand more fully why they should engage with these issues. The lessons from these consultations and awareness-raising sessions should be shared nationally and across the EU, because some of the barriers to donation are applicable across the board.
There is a general lack of understanding of the relationship between unhealthy lifestyles, disease and the damage done to organs, which then need replacing. Additionally, knowledge and understanding of genetic factors is quite low. I echo the comments and questions of the noble Baroness, Lady Neuberger, regarding specific government action and support for those organisations currently and potentially working with BME communities. That may mean developing capacity within such organisations, for which funds will be needed. Can we be assured by the Minister that such funds will be available?
We are pleased to note that the UK Government recognise the need for collaborative research and the sharing of good practice generally, and, crucially, that they accept the need for a more vigorous campaign of raising awareness, both of ways of changing lifestyles to prevent the need for transplantation in the first place, and of the need for more donors from a wide range of communities.
My Lords, it is a great pleasure to follow my colleague, the noble Baroness, Lady Young, who played a viable role with her knowledge and understanding of BME issues. Without her presence, the report would have been of much less interest in terms of its recommendations, which are important to deal adequately with some of the issues that we are discussing.
Perhaps I may join my noble friend Lady Neuberger in exhibiting a little displeasure about the fact that, if we are believe what we read in the London Times—I do not always—an important report is very shortly to be published which impinges directly on this one. I thought that we had a very good relationship with the Department of Health—the CMO, Ministers and everybody else treated us like adults. A committee report of this weight is not treated in an adult way if, a few short days after it is debated in this Chamber, a signal document about what the Government think about the future development of this important policy area is published. I attach no blame to the Minister, because she is very user-friendly and above suspicion, but she should go back and speak to the dark forces behind her. If I were the chairman of the committee, I would be slightly miffed about this, to put it mildly. I shall say no more than that. I have got that out of my system and I want to move on.
Like other colleagues, I really enjoyed the committee. I knew nothing about the subject. My views were radically changed, which was in part due to the magisterial way in which the committee was chaired. So robust were the exchanges that we were even threatened with the noble Lord, Lord Lea of Crondall, arriving at the committee without his socks. Not even exposure to the unclothed, finely turned ankle of the noble Lord, Lord Lea, fazed the chairman for a moment; she moved quickly on to the next business and we got through it.
There were robust exchanges and arguments, and I changed my mind on a raft of issues. I had thought that transplantation was expensive, but learnt that it clearly is not—it is a very cost-effective treatment; I did not realise the extent to which it was. I would have hoped that the United Kingdom was in the lead in the donation rates per million and was astonished to find how low we are in the league table. Other colleagues have mentioned that. It is a matter of concern for this House. I had thought that demand and supply were much more in kilter than I discovered it to be. The Chief Medical Officer gave us figures which were horrifying for a civilised country such as ours. There is something seriously wrong if La Rioja in Spain can aspire to 72 organ donations per million when we are at 12.5.
I had also thought that a transplant was not a particularly comfortable treatment, but was astonished at the evidence we heard of the life-enhancing developments that followed successful transplantation. It is obvious that it is a much more developed treatment than I had previously appreciated.
I changed my mind also on presumed consent. As an applied scientist who did a degree in pharmacy, I would have thought that presumed consent was a no-brainer, but I have been persuaded by the evidence. Phase 2 is important, but, as other colleagues have eloquently argued, phase 1 is no less so. I now subscribe fully to the idea that organisation is the way forward. I had previously thought that the European donor card was a good idea, but I am less convinced of that, because we had clear evidence that local, community-based, networked donation cards are much more effective and that some difficulties surround doing it at a European level—although it still has some merit.
The report suffered from what my military friends call "mission creep". It was led by our chairman, but it was inevitable and, indeed, extremely profitable. The provenance of the report was what the European Commission is doing. What the European Commission is doing is entirely sensible, but it led us on to looking at its consequences for the future provision of services in the UK, which is where the productive part of the evidence came through to me.
I absolutely endorse the EU proposals. I endorse the committee's recommendations. As I said, the chairman steered us all to a unanimously agreed and entirely sensible report with a whole series of recommendations, to which the Government have responded. It will pick up one or two things. I mentioned the fact that our position in the league table should be better. The target is for a 50 per cent increase in five years. Is that enough? I am not sure that it is. Of course, you cannot rush these things. I understand that the money is there, which is encouraging, but a 50 per cent increase in five years is barely adequate to bring us into reasonable kilter with our sister European nations.
What is to be done? The national organisation changes make a difference. I am certain of that. We do not need any new laws, but we do need a plan. We need to get on with it. We also need to bear in mind Dr Matesanz's warning that implementation of the plan is not easy. It needs individuals at a local level working in networks in a committed way. You do not get to 72 organ donation transplants per million without committed people knowing what they are doing and being properly trained.
I want to dwell for a moment on training because it is essential. At paragraph 4.13, the Government's response tells us that they are heading towards having 250 individuals trained in the United Kingdom, but we heard that Spain is training 300 or 400 every year. Spain has a culture of changing people, because those who carry these heavy responsibilities at hospital level by dealing with bereaved families need to be changed regularly because they get burned out. It is a difficult and emotionally taxing thing to do. Here we are aspiring to get 250 people. We have to bear in mind that that is a long way short of what is being done in other parts of the world.
I will concentrate finally on data needs, because one of the concerns that I was left with after the committee concluded its work is that we need to know an awful lot more about some aspects of this. We know that Professor Randhawa has been given an important role, which folds back into what the noble Baroness, Lady Young, was saying. We need more research. With the corporate knowledge and experience in our National Health Service, people will look to countries such as ours in Europe to offer that research and share best practice so that we can all assist one another to make progress in the way that is necessary.
I make specific reference to paragraphs 458 to 460 in the report where some obvious and sensible recommendations are made about using our professional and academic knowledge in this country to contribute to finding out more about the culture questions and emotional questions—what makes people do what they do in this important field—as well as raising public awareness, which other colleagues have mentioned. That is entirely sensible. I mentioned that we were not being ambitious enough. The Government's target for registration—trying to get from 15.5 million to 16 million—is rather under-ambitious. That is also something that we should look at in terms of making progress in the future.
I was very pleased to be part of this report. I am much better informed and I am now much more of a champion for donation. It is an obvious thing to do. We should have electronic registers because the easiest way for me to get on to a donor card register would be to log on to a website that was easy to browse and add my name to it. We have certainly had discussions around the Kirkwood supper table about this and we are three to one at the moment in favour of donation. I am still working on my son who was worried about his organs. We need to engage in supper time conversations around tables and start logging on and getting registered or we will lag behind as a nation and there is no reason for that. People expect us to do better. This is an important subject and I was pleased to be part of the report. The recommendations are entirely positive and I hope that it increases the momentum of the public argument towards making progress in this important area of public policy in the future.
My Lords, I join other noble lords in congratulating the members of Sub-Committee G on an absolutely first-class report, and in particular the noble Baroness, Lady Howarth, who chaired the sub-committee so ably. I hope the Minister feels, as I do, that in taking forward our efforts to advance and promote organ transplantation in this country and more widely this is a report that can genuinely claim to be a landmark point of reference for future policymaking.
As every speaker has said, the starting point for the report was the communication issued by the European Commission in May of last year, addressing the shortage of donated organs for transplant, which is a real and pressing problem shared by nearly all member states. The UK is in the spotlight here. Our organ donation rate is way behind the best in Europe and considerably below the EU average. The Commission proposed a number of ways in which the supply of such organs might be increased. In pole position was its suggestion for an EU directive, which would focus on the quality and safety of organ donation and transplantation.
Nobody, I am sure, could argue with the idea of promoting quality and safety in this area. The issues outlined in the proposed framework, such as donor records and traceability, are all very much to the point. However, it did not surprise me that there was a noticeable hesitancy on the part of the sub-committee in embracing the idea of a formal directive. The EU Commission is never less than well meaning and well informed but, in some instances, the result of that enthusiasm has been that its directives fall prey to over-prescriptiveness. In this case, it is clear that that would be an awful mistake. What came through in the evidence taken by the committee was that one can lay down all sorts of rules about safety and quality, but that in the end what often matters as much, if not more, for a patient is the freedom to choose where the balance lies between his clinical need and the quality of the organ that he is being offered. Some patients simply cannot afford to wait for an organ that is of tip-top quality.
In those circumstances, the rational choice could be to settle for something less. The committee concluded that there needed to be sufficient flexibility in any directive to allow scope for clinical judgment and informed patient choice, but I question whether that aspiration is realistic if one is also buying into the idea of rigid minimum safety standards. As the committee itself acknowledged, the one result that you do not want from a directive is a lower supply of organs. A raft of regulation might well produce that result. The issue was highlighted rather well by the Minister in another place, Ann Keen, when she said in her evidence that when faced with a real directive, clinicians should not necessarily follow it. I laughed out loud when I read that, because it summed up the case. There is surely a choice here. If the choice is between having a directive that lays down rules and retaining the scope for clinical judgment, we know what our answer has to be.
However, to express scepticism about a directive is not the same thing as being sceptical about European collaboration. I was very impressed by the evidence given by Elisabeth Buggins, chair of the Organ Donation Taskforce, who made that very distinction, as did the Minister. Indeed, she said that the UK stood to benefit from such collaboration in three respects: learning from other countries; traceability of organs which are transported across national boundaries; and confidence about implanting such organs as a result of doctors knowing that the quality of retrieval in the country of origin meets certain agreed standards. I agree with that analysis. However, we should not, I think, exaggerate the scope for international movements of donated organs bearing in mind that time is always of the essence in those cases.
In the UK, standards of practice are high, but there is significant variability in those standards among member states. For that reason, UK Transplant came out strongly in favour of harmonising the way that information about donated organs is recorded to enable an informed judgment to be made about the risk-benefit equation attaching to a given organ exchange. In that context I am quite ready to accept the EU Commission as a useful and appropriate facilitator. What the Commission should not attempt to do is to impose a one-size-fits-all template on member states whose laws and cultures are often very different. One of the Commission's main witnesses, Dr Fernandez-Zincke, gave an excellent reply to a question about organ tourism in the EU, when he said:
"Probably where we can play a role is to try to agree with Member States common national positions regarding this problem".
That seemed to me to encapsulate what the function of the Commission should be in this whole area.
I referred to the benefit of member states learning from one another. That point is particularly pertinent in the context of the debate surrounding presumed consent. One thing which the committee's report comprehensively demonstrated was that presumed consent is not, of itself, a magic bullet. It is often stated that if the UK were to move to such a system, all our troubles with the shortage of donated organs would be over. We heard from experts such as Chris Rudge of UK Transplant that that is not so. Spain is far and away the most successful country in the world for organ donation rates, as a number of noble Lords have said. The reason for that is not its system of presumed consent but, rather, how its transplant services are organised. Spain has invested heavily in the training of transplant co-ordinators, and it has many more intensive care beds per head of population
I was fascinated by what the report said about what it takes to be a competent co-ordinator. You have to recognise situations where there may be a potential donor. You have to make sure that the family of that person is approached in the right way. You have to ensure that, within ethical boundaries, the condition of the donor remains conducive to a donation, if that is what is decided upon. After the death of the donor, you have to ensure that the organ is successfully removed and directed to where it is needed.
It is only since Spain introduced these systems into its hospitals that rates of donation rose to their present levels. As the noble Baroness, Lady Finlay, pointed out, one of the stages in the transplant process where we in the UK fall down heavily is in our frequent failure to carry out brain-stem death tests. If we could only do that more routinely, we would hugely increase the number of potential organ donors. As it is, many potential donors are simply not identified as such. This is one area in particular where the UK has a lot to learn from practice elsewhere. From the opposite perspective, the clear benefits that have emerged from the UK Taskforce are an advertisement which other member states might do well to heed. If we are looking to define the ingredients of an EU action plan, setting up national taskforces might well be one of them.
It is sometimes said that a change of culture is needed in this country if our rates of organ donation are to improve. From the evidence that the committee heard, this is a valid observation—but only up to a point. The noble Baroness, Lady Neuberger, drew out the interesting point that British ex-pats living in Spain have been found to be 100 per cent supportive of organ donation when approached, whereas when the same kind of request is made in this country the refusal rate is 40 per cent. There appear to be several strands to that reluctance: a fear on the part of families that the donor's body will be "mutilated"; the lack of clarity on the part of families as to what constitutes death at a time when a person may still be visibly breathing, a point brought out well by the noble Baroness, Lady Finlay; and a general aversion in our society to accepting death as part of everyday reality. A skilled transplant co-ordinator is capable of turning these perceptions around and introducing a sense of pride and altruism into the discussion with the donor's relatives.
In Spain, that kind of discussion with the family is a sine qua non in the process of organ donation, despite the existence of presumed consent. This should tell us something important. The quickest way to bring the system of organ donation into disrepute would be to ignore families or to ride roughshod over their religious or ethical feelings. In a different but not dissimilar context, we saw the same happening at Bristol and Alder Hey. An equally rapid way to destroy trust in the system is to engineer a rise in the number of organs available for donation without putting in place the infrastructure to make good use of them. We are already guilty of that. At the moment no fewer than 76 per cent of hearts that are donated in this country go unused each year. A number of witnesses who expressed support for presumed consent were at the same time quite clear on that point.
The organisational structures have to come before anything else. Part of that, as the report makes clear, involves getting the public more on side by promoting donor registration. That applies particularly to ethnic minority communities who all too often miss out on being given relevant information on the subject. The ways of reaching those communities need to be thought out more carefully than perhaps they have been. Indeed, if we can only crack that part of the nut, we will be well on the way to achieving a major improvement in our national track record for organ donation.
There are not many occasions when I can issue warm words of encouragement to the Government on what they are doing, but this is one of them—and it is a Friday. A lot more needs to be done, as we have heard from all speakers, but it seems that Ministers have so far done a great deal that is right. They have agreed to fund the taskforce recommendations in full. They have appointed Chris Rudge as national clinical director for UK Transplant, and have made him accountable to Sir Bruce Keogh for delivery of the action plan. They have appointed James Neuberger as head of UK Transplant. These are first-class people in whom we can place our confidence.
My only message to the Minister and her colleagues is: please keep up the good work. There are many thousands of people in our country who depend upon them doing so.
My Lords, I join other noble Lords in congratulating the noble Baroness, Lady Howarth, on securing today's debate on the House of Lords European Union Committee's excellent and helpful report on Increasing the Supply of Donor Organs within the European Union, published earlier this year. I congratulate all noble Lords who have contributed to the debate and to the report. I welcome this debate on the issues and challenges in organ donation and the opportunity that it gives me to outline the action that we are taking nationally and internationally to increase the number of high-quality organs for transplant. I agree with the noble Earl that this is a landmark report; I suspect that it will not just sit on a shelf.
We all agree that organ donation is a medical success story. Each year in the UK, over 3,000 people have either their life saved or the quality of their life greatly enhanced by the gift of a donated organ. However, tragically, around 1,000 men, women and children die each year, either waiting for a suitable donor or having been taken off the transplant list because their condition has deteriorated to such an extent that they would no longer benefit from the transplant.
In the UK, 8,000 people are on the active waiting list for a donor organ. The number rises by 8 per cent each year. However, this list does not reflect the true extent of need, as many clinicians are reluctant to list more patients than are realistically likely to receive an organ. There is also a particular and urgent need to address health inequalities referred to by several noble Lords. People of Asian and African-Caribbean descent are three to four times more likely than white people to develop end-stage renal failure and need a kidney transplant, yet only 3 per cent of deceased donors are of Asian or African-Caribbean descent.
The shortage of organ donors is not unique to the UK. In developing its report, the committee acknowledged that a shortage of donor organs was a problem across the European Union as a whole, and there is wide variation in donor rates, as noble Lords mentioned. The EU donor rate averages out at around 18 donors per million members of the population, which compares unfavourably with the USA, where the average donation rate is around 25 per million. As many noble Lords said, Spain has the highest organ donor rate in Europe and we have many lessons to learn from that, as is reflected in this excellent report.
Therefore, there is no doubt that we need to do more although the Commission has noted that, even in those member states where there have been sustained increases in the number of donors, it has remained difficult to reduce the number of people waiting for a transplant or the time they spend on waiting lists. That is why, in May last year, the EU Commission adopted a communication on organ donation and transplantation which proposed two mechanisms for action across the EU. First, it proposed an action plan to encourage closer co-operation between member sates, sharing expertise to maximise organ donation and optimising equity of access to transplantation. The Commission also proposed to monitor any developments in organ trafficking and, if necessary, to consider additional action, which I am sure we all agree is the right way to proceed. Secondly, it proposed to put in place a legal framework to improve the safety and quality of organs for transplantation. The EU already has directives to improve the quality and safety of blood, tissues and cells. A similar European organ directive would set standards of quality and safety for organs donated and retrieved for transplantation. It was, of course, following this communication that the House of Lords European Union Committee established a sub-committee chaired by the noble Baroness to investigate the merit for action at EU level to increase the supply of donor organs within the European Union.
The report of the inquiry led by the noble Baroness made a number of recommendations with the primary purpose of contributing to the future development of sound proposals at Community level and to the improvement of performance of organ donation and transplantation activities in the UK. The government response was published in September in Command Paper 7466. Due to the pressure of time available to us today, it will not be possible for me to run through every recommendation, as I also wish to address specific points raised by noble Lords. I shall therefore focus on the committee's key recommendations and what we are doing to address them.
The Government welcome the committee's recommendations. Its wide-ranging inquiry and report have helped raise awareness of the issues that people waiting for a transplant and the professionals involved in their care face every day and, indeed, discuss across the kitchen table, as the noble Lord, Lord Kirkwood, mentioned. I discussed this by mobile phone with my daughter this morning when she asked what I was doing today.
The Government are keen to work with the Commission and other member states to support work to raise the profile of organ donation and to increase transplantation rates. The severe shortage of organs donated for transplant remains the main challenge, as most noble Lords said. Clearly, there are potential benefits of a pan-Europe approach to increasing donor rates and optimising safe and high-quality organs for transplantation. However, the Government agree strongly with the committee that any standards introduced must be kept to the minimum necessary to ensure safety and quality. I reassure the noble Baroness and the noble Earl that we agree that they must be sufficiently flexible to enable decisions about whether to accept an organ for transplantation to be informed by soundly based clinical judgment. The UK health departments are therefore working with the European Commission and other member states to help ensure that any proposed standards within a legislative framework do not prove a disincentive to donating hospitals and transplant centres, and that they provide helpful but proportionate legislation.
The committee also made recommendations to improve the donation infrastructure in the UK. It asks the Government to act urgently to address the shortage of organs for transplant in the UK. The Government agree that urgent action must be taken. This shortfall in the number of organs available for transplant is why the Department of Health established the Organ Donation Taskforce in 2006—as commended by the noble Earl—to consider the barriers to organ donation and to make recommendations on how they could be overcome. The Government have committed to implementing the task force's recommendations published in January this year. An extra £11 million has been made available for 2008-09 and significantly more identified for 2009-11. By March 2013, we should see a 50 per cent increase in organ donor rates—we regard that as a minimum—some additional 1,200 transplants each year. A further £4.5 million has been agreed over the two years 2008-10 to support work to raise the public profile of and support for organ donation. Longer term funding requirements will be considered as part of normal business planning. I have no doubt that noble Lords will apply appropriate pressure in that regard.
Significant progress has already been made. Mr Chris Rudge has been appointed national clinical director for transplantation. The Government have established a programme delivery board chaired by Professor Sir Bruce Keogh, the NHS medical director, to oversee progress. We are already improving the donation infrastructure. Additional donor transplant co-ordinators have been recruited; work is under way to strengthen UK-wide organ retrieval arrangements and NHS Blood and Transplant continues to work with individual hospitals to identify and appoint donation champions and donation committees that can drive local progress.
We fully support the committee's recommendation that as part of a wider public awareness campaign the Government should support locally led programmes, engaging with black and ethnic-minority communities with the goal of increasing organ donation within their communities. There is clearly much still to learn, but the Government will continue to identify and implement the most effective ways to promote organ donation to the public. We agree with the committee that we must do more to prevent disease and support the committee's recommendation that the Government should establish programmes to implement and audit the success of disease prevention schemes. For example, national service frameworks for diabetes, renal services and cardiac disease set out for the first time national standards or highlighted requirements for disease prevention, and the report High Quality Care for All, relating to the NHS next-stage review of my noble friend Lord Darzi, sets out the importance of commissioning prevention services.
I shall try to address my responses to the points raised rather than to the noble Lords who raised them, which I hope will result in my covering most of them. The noble Baronesses, Lady Howarth, Lady Morgan and Lady Neuberger, and others referred to donor cards and routes to donation. We are fully committed to supporting action to increase the number of organs available for transplant. As noble Lords are aware, people in the UK can carry a donor card, register on the UK national organ donor register or both. Both are recognised as consent to organ donation in the event of their death, although the family would, of course, still be involved. The target in the UK is to register 16 million people by 2010, but this is not just a matter for Government. We need everyone to play their part if we are to give more people the opportunity of life-saving or life-changing transplants. The routes to organ donation are adding your name online to the organ donor website, telephoning the organ donor line, completing your driving licence application, registering with a new doctor or GP surgery, applying for a Boots advantage card, applying for a new passport using the leaflet enclosed, or registering for a European health insurance card.
All those routes go some way to achieving our objectives although I agree with my noble friend Lady Morgan that a great deal more needs to be done. I take particular note of the suggestion with regard to education. I know that the NHS blood transfusion service has done some work with schoolchildren, but I undertake to feed in these suggestions to ensure that there is cross-government action. I also undertake to write to her and other Members of your Lordships' House to tell them how that proceeds.
My noble friend raised the issue of the electoral roll, including donor cards. He is right that it was successful in many areas to include that with the electoral roll information, and that it was stopped. We are looking at many other ways to increase awareness, and we will consider cross-government approaches and discuss this with other government departments as we move forward. The access address for organ donation is www.uktransplant.org.uk.
My noble friend Lady Morgan raised the issue of training, as did other noble Lords. All donor co-ordinators receive training, including the new staff recruited since the task force report. There are approximately 40 to date, and there will be 63 by March 2009. The training programme for clinical champions is now in place, and a major workshop on training for all clinical staff, including doctors, nurses and undergraduates, is to be held in January 2009.
The noble Baronesses, Lady Howarth and Lady Finlay, and the noble Earl, Lord Howe, asked about brain-stem death guidance and related issues. The Government have worked closely with the Academy of Medical Royal Colleges in the development of an updated code of practice for the diagnosis of death, which was published on
The updated code of practice published by the Academy of Medical Royal Colleges provides detailed guidance on the necessary preconditions and the tests. The Organ Donation Taskforce report recommends that urgent attention is required to resolve legal, ethical and professional issues, to ensure that all clinicians are supported and feel able to work within a clear, unambiguous framework of good practice, as the noble Baroness, Lady Finlay, outlined. Only then, as she rightly said, can organ donation start to become a usual part of healthcare practice. To achieve that, healthcare departments are working with the clinical community and legal advisers as part of the wider implementation of the task force recommendations, to agree how to provide the necessary clarity for clinical staff in the diagnosis of death and the process of donation.
The noble Baroness, Lady Finlay, rightly raised the issue of transplant capacity to perform more transplants as donation rates rise. The Department of Health is working actively with transplant commissioners to ensure that donated organs are never wasted.
The noble Baroness, Lady Young, and the noble Lord, Lord Sheikh, raised the issue of the BME community and organ donation. The noble Baroness and the noble Lord have rightly highlighted that we must do more to encourage people to support organ donation, particularly in the BME community, and to identify and implement the most effective ways to promote organ donation. For example, the NHS Blood and Transplant service is funding a two-year study to look at why individuals make gifts and donations generally, and how those findings might be used to increase organ donation among the UK's multiethnic and multifaith population. The department has established a research co-ordinating group to focus further on academic research into the best way to achieve progress.
Noble Lords will agree that there has been a lot of diagnosis of this problem, but we have to have action now to deal with it. I had a lot of sympathy with the remarks made by the noble Baroness, Lady Young, about faith groups and the need to develop a more sophisticated approach. The Government recognise that we need greater understanding of the concerns about aspects of organ donation among faith groups. She is correct that there are different concerns in different groups, which is why we need a more sophisticated approach. Although we have started to work with individual groups, we see this as the beginning of a dialogue that may need to be sustained over many years to build the understanding and trust necessary to engage fully with the organ donation issue.
Presumed consent has been referred to by many noble Lords. Notwithstanding noble Lords' breakfast reading of the Times, I am sure that they will not be surprised to hear me say that we asked the Organ Donation Taskforce to look into the potential impact of opting out, and I am not going to prejudge the outcome of that work. I know that it has considered a wide range of evidence as part of this work, and we look forward to the publication of the report. I take on board many of the remarks that noble Lords have made that we need to increase the number of donors. That is key, and that is the priority. We expect the report to be available soon.
Several noble Lords, including the noble Baroness, Lady Neuberger, the noble Lord, Lord Crisp, and the noble Earl, Lord Howe, raised the issue about the culture of organ donation, sometimes in the context of what happens in Spain. The culture of donation in Spain is the result of nearly 20 years of active promotion. The evidence that the committee received told us that nearly a third of the time of Dr Matesanz is spent working with the media, for example. There are lessons that we need to learn about that. I agree with the noble Earl that, up to a point, it is an issue of culture.
The noble Baroness, Lady Neuberger, and other noble Lords raised the issue of donor champions in hospitals. We are aiming to have 50 donor champions in trusts by March 2009 and for all trusts to have donor champions by March 2010. The noble Lord, Lord Crisp, raised the issue of alternatives to transplant. He will be much more aware than me that the national commissioning group currently commissions the use of ventricular assist devices as a bridge to heart transplant from designated transplant centres. Mechanical assistance is a promising technology but, before making it more widely available as an indefinite long-term treatment at the end-stage of heart failure, we need to ensure that there is clear evidence of its benefit. The noble Lord will be aware that we remain open to considering research proposals to improve this knowledge base.
In conclusion, the debate this morning has highlighted many important issues. The committee's report provides an excellent body of evidence that will no doubt prove extremely helpful as work continues across Europe. It also provides significant support for the implementation of the Organ Donation Taskforce report recommendations published in January 2008.
I was pleased to hear the Friday encouragement that I received from the noble Earl. I hope that noble Lords will agree that the Government's response to the House of Lords inquiry, and the actions that we are taking to implement the Organ Donation Taskforce's recommendations, demonstrate our commitment—which has been called for by all noble Lords—to work with the European Commission and other member states to raise the profile of organ donation across Europe and to address the shortage of donated organs in the UK. I am happy to assure noble Lords that the Government will continue to provide the commitment and encouragement to ensure that this support continues.
My Lords, I thank the Minister for her encouraging reply. It feels like a pretty good Friday. I came to the House knowing about the Times leak, about which I felt pretty miffed, although I was not going to say that to the Minister, who I know, as everyone else has said, is unlikely to be the difficult one. She rightly said that she will not speak about the report until she has it officially. We look forward to the report with great enthusiasm. I thank her for her reply and I thank all noble Lords who have taken part in the debate.
The quality of the debate has been remarkable, which reflects the quality of the committee. Many people have congratulated me but, if you are chairing a committee made up of the members of Sub-Committee G, whom you will see in the list, you cannot possibly fail. I was totally impressed by the way in which the committee was able to follow the arguments, check through the kind of questions that we were to ask and ensure that at the end of the day we had looked not only at the European dimension, which is what we were there to do, but followed through—slipped along, as the noble Lord, Lord Kirkwood, pointed out—into the implications for the UK, which we would have been remiss to fail to point out, looking at the great success in Spain.
The success of the report is due to the committee and to those who supported us. We had an excellent adviser in Bobbie Farsides, who kept us informed on technical details. At last I understood about brain-stem death; I understood even more when I talked to my noble friend. These were important issues for members of the committee to comprehend if they were to reach proper recommendations at the end. We had our own adviser in Alistair Dillon, but most of all I pay tribute to our committee clerk, Barry Werner. Barry retired just about at the end of this piece of work. He was an outstanding committee clerk. He is not here, because he is sunning himself in the Canaries with his wife on his retirement. Why am I not sunning myself in the Canaries? I am sure that members of the committee would wish publicly to acknowledge his work and to wish him well.
During the debate, several conundrums faced us. I was impressed by the thoughts of the noble Baroness, Lady Morgan, and wondered why we had not hit the trick with a pile of application forms at the door. However, if all noble Lords had filled in that form or had logged on, as the noble Lord, Lord Kirkwood, mentioned, and tomorrow one had sadly gone under a bus—the Almighty forbid—there would have been no guarantee that their organ would have been used for someone in need. That is why, throughout the debate, we have urged the Government to get a move on with their plans. The noble Earl, Lord Howe, was generous to say that the plans are there, but the Minister will have heard me say in debates on other issues that what counts is implementation, implementation, implementation—ensuring that the service reaches the ground and does not remain a concept.
In conclusion, on the day that I was with all my children in Birmingham, Charlie, a young child, did go to a chocolate factory. He went out to see how chocolate was made. Charlie is six; he is a beautiful child. He has been through two stages of having small mechanisms put into his heart to take him through to the age he is. I listened to my noble friend Lord Crisp and I believe with all my heart that we have to develop mechanical aids but—this is another conundrum—we must remember that we are not there yet. It is important for the general public to realise that we still need donations now and tomorrow, because we may not develop mechanical techniques and Charlie wants to take his children to the chocolate factory. Let us hope that he can.