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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
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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?”,
“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”.
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- “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”?
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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.
10.47 am
Baroness Finlay of Llandaff: 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
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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, is 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
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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, 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
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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.
10.57 am
Lord Crisp: 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
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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
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