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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.
11.05 am
Baroness Young of Hornsey: 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
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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 a 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
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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 about 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.
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11.14 am
Lord Kirkwood of Kirkhope: 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
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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
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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.
11.25 am
Earl Howe: 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
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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".
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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.
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