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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
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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.
11.38 am
Baroness Thornton: 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.
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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 states, 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
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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.
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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
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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 20 October, with a foreword written by the Chief Medical Officer. The preconditions and clinical tests are set out very clearly, and we are confident that the guidance will help clinical staff to make decisions in relation to a patient’s care and treatment and the diagnosis of death.
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
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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
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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.
11.58 am
Baroness Howarth of Breckland: 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
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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.
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