Thank you very much, it is a great pleasure and a privilege to be here. I wanted to mention the Transplant Partnership on the list of things I currently do, not because I wanted you to say what a sad person and say why doesn’t he get a life? Because the Transplant Partnership has been really important and the input of the NKF, particularly Tim’s sterling efforts on our group, has been extremely helpful, now the Transplant Partnership which has you heard is a coalition of about 20 organisations including most of the Royal Colleges has achieved its aim of getting legislation around organ donation you may feel that it is not quite the legislation we wanted? But we got it! The question is what do we do next? We are currently discussing whether having achieved our first aim whether we continue or not.

The title that I was given was to talk about the ethics and the sale of organs and it is not really possible to do that without really putting some kind of background to the whole debate around organ donation and transplantation and also the thinking about organ sales in the context of what is going on in all the other parts of the transplant world. This slide rehearses a depressingly familiar theme, which are the increase in the waiting list and the reduction in transplants and the reduction in donors. Now in fact you may have noticed that the Minister this morning used a slightly different counting period from April to March. This seems to have come in not genuinely to massage the figures and make them look better but because they coincide more with other periods of financing in the health service and helps to get a better picture, but that had nevertheless improved the picture although I think the underlying trend is still very worrying indeed.

The active and suspended waiting list of people is going up, and in the last accounting period it went up another 2%. If we look at the cadaver donors, again we see a familiar fall but we have seen an increase and I’ll come to that in a minute and again using new accounting periods the last two years have improved. What is worrying of course is that when we look at the solid organ transplants from cadaver donors we do see a continuing fall and that is off set to produce an increase in the total transplants by non heart beating and live donation and again the Minister quoted a figure this morning of a 21% in figures on live donation. I have actually got 16% in my latest figures, which she might have, more recent ones, but we do agree on the increase on the accounting period of about 20% in non-heart beating donors.

So we see a difficult picture and I think one in which it is very, very hard to get some kind of idea what the maximum potential donation from the various sources that we have now whether it is patients or donors dying in intensive care, whether it is non-heart beating donors or whether it is live donors. I think what we can safely say is that donations and transplantation from donors from intensive care is pretty well static and not likely to increase that much for a number of reasons, one of which I will come to in a minute. Therefore we are reliant on non-heart beating and live donation rates to increase significantly in order to have any hope of closing the gap between those waiting and those getting and waiting for and those receiving organs. There are also some quite interesting variations in the actual activity, the activity across the country. We have got 9.1 per million as a rate in Scotland, in England it is 13.2, in Wales it is 15.2, and Northern Ireland it is 17.8 per million, which is curious variation that we cannot quite explain. What is also interesting is in the Republic of Ireland it is 21.3 per million. There are two things that may contribute to that, that might be worth thinking about in the Republic it is traditional for a family member to also sign the organ donor card. So that kind of increase is a sense of ownership of the family and the decision.

So if we just have a look first of all at the first problem and that is the relatively static situation in intensive care. Now the latest donor audit, which was the first one that was done for well over 10 years, is quite depressing and it is depressing in one very significant way and that is that we see out of the people audited we had 496 patients declared brain stem dead, there was actually no discussion in 12 % but where there was discussion consent was only given in 52% of cases. So that means a refusal rate of 48% and that is coming down the latest audit suggest the latest collection of figures to be 42%. That is still very much higher than the audit that was taken a little over 10 years ago when the refusal rate was around 30% So why did this happen? It is very difficult to explain exactly why this has happened. I was a bit disappointed to say the least that the Minister’s presentation this morning conflated the problems of organ retention and organ donation. I thought this audience at the very least was intelligent to know the difference and I was disappointed we heard arguments against presumed consent in connection against organ retention, which I found not to be convincing. The fact is there has been an Alder Hey effect running right through the problems of consent for taking organs for whatever purpose and I think to some extent there is an Alder Hey effect on this higher rate of refusal, it is just a bit complicated. I think people are much more sensitive these days to understanding that need to be quite clear what their relative wishes are and if they don’t know what their wishes were, which in most cases they don’t know when someone may become a donor, the default position is to say no. I think that is probably a slightly round about way of explaining why the refusal rate is so high. Now of course there isn’t any single solution to what we are going to do about this problem, not that problem but the whole problem. But I think that we could say that one thing that might be worth considering and I will come to it in a minute, would be the rights of those actually who need organs, perhaps so much a reduction in retention to those to becoming donors and their families but perhaps a rebalancing of this equation. That we need to talk much more about communication consent and that links in carrying the card and being registered on the Organ Register I really think we need to talk about presumed consent.

We need to talk about the economics and then we need to link in what we can do to increase live donation and non-heart beating donation and then finally finely come to what you asked me to talk about, which is talking about a market. So I think if we look at starting with what is to be done take the first four there we will come on to the consideration of the rights of those who are ill in a minute. First of all I think when we talk about carrying the card and being registered we see about 11.2 million on the organ register, interesting enough again there is a regional variation. In Northern Ireland it is about 14% of the population and in the south west of England 23%, which is interesting. I don’t really think that given the high rate of refusal that we are seeing and may continue to see particularly if the political message we heard this morning remains as deeply confused as we heard it. Then I don’t think we see much change in that and it seems to me that quite indefensible to not be going down the road of presumed consent when we see the benefits in other countries and I quite take the point that if you look at other countries that have it, it’s not just presumed consent. I strongly believe that combined with an investment in the infrastructure of organ donation the whole process of discussing a change in the law is in itself a widespread educational process that would be highly effective in this country as it has been in others. I don’t think I am alone in finding it quite repugnant that the Whips were put out against any change to presumed consent. It is not the sort of behaviour I would expect from the Minister for Health. That said, end of party political broadcast. It is also interesting to note by the way that one route into getting people on to the register has proved very successful which is the DVLA applications that have gone up from 35 to 39% of applications now going on to the register. So that is a very helpful process.

So let’s just talk a little bit about the rights of the sick. We heard a little about organ retention this morning and the fall out from Alder Hey, Bristol and other areas where there was retention of organs against the anybody’s knowledge at all that it was happening other than the pathologists who were doing it. It would be quite wrong to try to minimise that. That was a bad process, it was unfortunate to say the least and it was quite wrong. It was done maybe for the best of reasons and I think one of the interesting things in talking to pathologists who were caught up in this was how surprised they were, genuinely, honestly surprised they were at how wrong their actions were perceived to be by other people particularly in fact the GMC and ourselves the BMA, because to tell someone that you going to retain the organs of their children just because you think they won’t be able to handle it in anyway if they would ask them they would anyway is a deeply paternalistic and not a very good way of practising good ethical medicine.

Nevertheless it happened and the fall out from that has been in the Human Tissue Bill as Rosie Winterton said this morning a bill about keeping organs that is very much fashioned on being absolutely almost obsessively careful that Alder Hey won’t happen again. I don’t think it will happen again because the Royal College of Pathologists, the BMA and the GMC, the Government, the Chief Medical Officer and everybody else have told doctors exactly how to behave for the future, so I don’t think this will happen again. Nevertheless the legislation requires that the process of consent, information about how long and for what purpose organs are retained when and how they are disposed of, how they were returned if necessary was so tight that at the initial recommendations, initial drafts of the human tissue bill virtually made research and education impossible. The Government rapidly backtracked on the major connections which are the basic ones that we all go through when we go to our GP or to a hospital which our blood, urine, smear test, all those things that I doubt many of us really have a deep concern when we pee into a bottle that someone is going to be looking at urine tests in 20 years time and making some fantastic new medical discovery from it. I really don’t think we can give a damn about that, but the first suggestions in the Human Tissue Bill is that we should be deeply concerned about it and we should give permission for what ever happened to it,maybe after we were dead. Not surprisingly some of the research bodies came up and said this is crazy! So we now actually have a process in those big samples where there is a presumption that you will be happy for us to use your sample for whatever purpose unless you have actually said no.

Interestingly enough your medical records when it goes into this new National Programme Information Technology in the NHS in the £6 billion revamp of computers will also make the presumption that you would like your information held on new records unless you opt out. Now this is sounding slightly familiar, isn’t it don’t you think? So we have two principles of presumed consent and opt out on the National Health Service on our way and my question is what is wrong with organ donation? I am dangerously heading back towards presumed consent again - I must try to control myself. We do have this problem implied versus informed consent and I think that is something that we need think a bit more in terms of the balance of what I see now as a very obsessively restrictive consequence of Alder Hey, not denying the importance of it, just trying to move on from it. Rebalancing the rights of the sick with rights of the dying or the dead. We need to restructure that in the interests of treatment and the interests of the health service planning and in the interests of research and teaching. All those things depend on that rebalancing.

We also have problems that you know we are all very altruistic and those of us in this room who are suitable to be organ donors and that is a lot of us here, would wish to be so I know it because I asked similar groups so many times and 90 % of people say yes. Then I ask them to put up their organ donor cards and I am lucky if I get 10%. So there is lethargy in the system in all of us about not thinking about and quite rightly so - I can understand that. But combined with that refusal rate that we are seeing at intensive care level and the argument of course comes back towards presumed consent. I think we are left with the feeling that we do as I said already need to rebalance this interest of those who need organs against those who quite frankly in most cases don’t really care what we do with them anyway when they are no longer in need of them and I think that’s a message that needs to go out from anybody who cares about this kind of situation and I think it needs to be led by Government. I think there has been a huge mistake in presenting the Human Tissue Bill as something that protects a small group of people and I think discriminates against a much wider group who need more help.

I think also we could, although it is a difficult argument, look at the economics simply to say there is a flaw in this process, simply to say that on average with maybe 30% of people being dialysed peritoneally and 70% on haemodialysis, the average cost of dialysis is about £30,000 a year, the cost of a transplant is £20,000, then immunosuppressants come in at around £6,500 a year. You have an immediate small cost saving in the first year and a substantial cost saving in the next. The flaw is of course you have a lot waiting to come in for treatment, but at least you move the waiting list by that kind of economic consideration. I have already said that we should be doing more and this is where I think more is being done to improve non- heart beating donation, which has got some ethical and legal issues which I know are being incisively discussed because the BMA is part of those discussions to try and breakdown down those legal procedural barriers, and live donation also and trying to improve the ability of people to donate altruistically by widening the general concept of the ultra process is also important.

So just to finally move on to the thing that I am obliged because my BMA secretariat told me that if I didn’t say these two things I would be hung, drawn and quartered when I returned to BMA house. The first is that hardly anybody thinks that selling organs isn’t a good idea and the second is that is illegal. I said that now, and everyone knew that anyway. I do think that it is a very important principle and I would not necessarily go further than this today in trying to be a bit challenging to say that when we believe things very strongly that is maybe a good thing, but we still have an obligation to check why we believe them and whether in the light of changing circumstances the arguments in favour of our beloved system are sound and are convincing and consistent. I think at the very least some of the arguments that have been played out about how terrible selling organs is do not really stand up. I think at the moment of a coherent enough set of reasons for opposing it in themselves but also when rebalancing the rights of people who deserve treatment against those who might be possibly exploited by the sale of organs, I think again it is a difficult argument to sustain that there should be no move of any sort in this direction. Now the BMA would go no further than to say let’s at least discuss it. The first objection that is raised is of course the one of exploitation, the familiar picture is of the first world preying on the third world and grabbing their organs, usually they are not much good. They usually need taking out again when these people get home again adding therefore to the load on the NHS and we buy organs from the third world. Well we know that it is highly undesirable it shouldn’t be allowed, it may be happening in a small way, but we are not talking here I think of any sane person talking about selling organs would want to operate that kind of market. So that exploitative cross country first world/third world flow is really not something I think could sensibly be considered.

The second big argument is that we destroy the concept of altruism that somehow altruism is the thing that drives people, that the donation is somehow is more pure because there is no money changing hands, that people will feel somehow that the whole thing is commercialised and the whole concept of a gift disappears. Well fine! What I would say is that the concept of a gift isn’t getting us too many organs at the moment and that is something which we should be considering. We know of course there would be huge unevenness in what would happen. The rich would get the organs and the poor, particularly if we continue to continue to raid the third world for organs, would just get poorer. The same thing would happen in an uncontrolled market in the UK. I think the arguments for a kind of discriminatory sort of economic pressure in this would largely disappear if we were to consider the concept of a regulated market in which there was a price for that organ and above all obviously, and one which I don’t think we have thought through properly unless we actually want to think about it and get our minds on it, is how do you check for pressure, how do you check for family pressure, how do you check for hidden pressures etc? A kind of hidden discrimination, and the hidden exploitation that is a real problem and one that I don’t have an answer for and I don’t think anybody else does because we have not really engaged in the debate.

Maybe the final issue is that which we have an obligation to stop people making bad decisions. I find that rather paternalistic! Being a father, being paternalistic and hopefully in the best sense of world, I certainly wanted to stop my children up to the age of about their teens making bad decisions because I thought it was good to be preventing them from doing something that was bad, but I think all of us as parents learn throughout the time that our children grow up that sometimes they do have to make bad decisions and the consequences for them to make and for them to learn from. I find it quite offensive for people to tell me that I couldn’t do this because it would be a bad decision. Well, I’ll make up my own mind about that, thank you very much! I’ll find out the consequences. So the question is: Is it our business? Is it okay to be paternalistic? Against giving people as we do in the whole other areas of healthcare decision-making pretty well autonomy to make decisions for themselves.

So I just raise these as debating points, but obviously the subtext seems to be that I find most of the arguments are against some kind of well-regulated sale of organs within the NHS. The arguments against those are a bit thin and I think those people who want to argue against it to be blunt have to do better than that. If they can do better than that let’s have that debate. In the meantime we are left with two things. We are left with that and the other thing we are left with is this:; let’s think about them before we rule anything out in this very difficult field. Thank you very much.

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Next >>Michelle Harris - Patient Speaker (Detailed Report)

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