Kidney Transplant Bill [HL]

My Lords, I thank the Minister for her full reply and I certainly must thank all noble Lords who have spoken today, many of whom have shared their personal experiences and told extremely moving stories. The noble Baroness, Lady Golding, brought home exactly why we cannot wait. I am grateful to the noble Lord, Lord Elder, who underlined the point so eloquently made by the noble Baroness, Lady Tonge, about the need to talk to relatives and the need for these conversations to happen routinely. That has been the driving force, in a way, behind my Bill. The Organ Transplant Taskforce certainly has made important infrastructural recommendations, to which the noble Lords, Lord McColl and Lord Rea, referred. They are absolutely essential whatever happens, wherever things go and however one decides. I will try to answer some of the points about the opt-out and the issue of one kidney. The noble Baroness, Lady Verma, is right to say that only 3 per cent of organs come from the black and ethnic minority population. That group needs organs, yet it is the group with the greatest mistrust of authority. Many healthcare professionals come from this group and from a background and culture of inherent slight mistrust. They have been brought up in a culture in which people do not ask about this. So we have a double problem in those very areas where these people are living and working as regards making sure that the relevant conversations happen. I say to the noble Lord, Lord Brooke of Sutton Mandeville, that three things inspired this Bill. The first was a friend who has now had a third transplant. I learnt through him the extent of the despicable trade in organs. This terrible trade exploits people but occurs only with kidneys. That is what prompted me to look at kidney transplants. The second thing that inspired this Bill was the report from the Chief Medical Officer and the third was conversations with my children. My daughter is a bassoonist, like the noble Lord, Lord Rea, and an accident and emergency trainee. It is very difficult for the relevant conversations to happen in the current climate given the pressures on junior staff when these patients are brought in. Nobody should underestimate the problems of asking absolutely shattered bereaved relatives for organs. It appears to me that asking for a kidney would be much easier and would begin to get the conversations going. That is why my Bill is framed as it is. I have checked with the Bill Office about including a requirement, before taking a kidney or organ, to ensure that the local co-ordinator of transplant services has taken all reasonable steps to discuss with the next of kin the voluntary donation of other organs, including the second kidney. That is quite acceptable and within the scope of the Bill. So it is not a case of presumed consent for other organs. There are huge problems with presumed consent, which have been alluded to in the speeches both in favour of and against presumed consent. As for the Mental Capacity Act, I should be only too happy to delete the relevant section if that was appropriate and to strengthen by means of an amendment the conversations that have to take place with families. Currently, we have 400 kidney donors, which gives us 800 kidneys. If the figure went up to 1,600 donors, which is way inside the figure that I have calculated as being available, we would have at least 1,600 kidneys. If a small number of those said, ““Yes, and while you’re there take the second kidney””, that would solve a huge problem on the transplant register. I emphasise that more than 88 per cent of people waiting for an organ transplant are waiting for a kidney. Why only one kidney? Pancreatic transplant is somewhat routine surgery now but the numbers involved are much smaller. There are emotional issues around heart/lung transplants, as they have to be taken from a heart-beating donor. Setting it up is much more difficult in terms of moving the body for the transplant to occur, which makes it a much harder ethical, logistical and emotional decision for people to take. There is certainly a phobia about eye transplants. Also, some people who have never drunk alcohol or taken drugs do not want to donate their liver because of issues connected with alcohol and drug damage that may have resulted in the liver failure of the recipient. There is that inherent fear and mistrust which was alluded to and which the noble Lord, Lord Sheikh, eloquently laid before us today. There are questions about where a total opt-out would stop. What about faces? Where are the new frontiers? What would happen to neurological tissue? What could be taken? How would we define the boundaries? That is why I drew the boundaries so tightly around only one kidney. There are questions about an opt-out overall and about the possible loss of the database. I have followed conversations on websites after announcements in the press. That has made me cautious about how much the population is ready to accept total opt-out as opposed to a very limited opt-out. Sadly, there has been much misinformation about what any kind of opt-out would allow. I remind noble Lords that, although Spain has the softest of legislation, that legislation does not, so far as I have been able to ascertain, allow an organ to be removed unless the consent of the family is obtained. Of course you need the consent of the family to do it, because you must know about the person whose organ you are taking—what they have done and what diseases they have had during their life—to know about the suitability of that transplant. It would never work to have legislation that says that you can just go in and take an organ. I hope that I have made that clear enough in my Bill, but I completely accept the comments that have been made. I hope that the Bill, if it does nothing else, will move the debate into the public arena a little more than has happened already, with all the publicity last weekend. I hope that it will begin to put in train support for those healthcare professionals who need to have the confidence, skills and tools to begin to have those all-important conversations. I will close with the words of the noble Viscount, Lord Chandos, who spoke immediately after me; something has got to be done. We must put words into action. He spoke about looking three years on; how many people are going to die in the next three years while we are waiting for words to be put into action? That is what precipitated me to do something now; because there are more people dying for lack of a kidney transplant than any other organ, and because transplantation of a kidney is so simple. In the event that we got it wrong and that relatives came back from abroad and said, ““My relative had wanted to opt out; my relative never wanted any organ to be taken””, and you had taken one kidney because there was an element of doubt, but you felt that there were no objections, that person’s body would at least be buried with all their physiological functions intact. Whatever we do, we must not stack up problems among the bereaved. We have several groups to consider. First, there is the person who has died and what they want. Secondly, there is the patient who is in desperate need of an organ, and they need it today—not tomorrow, next week or next year. Thirdly, we have the members of the bereaved family who live afterwards, possibly with regrets of different types. I thank the noble Baroness, Lady Tonge, for having called this an elegant Bill, and for having appreciated—sadly, she has had to experience this from both sides of the fence—why my Bill has been drafted as it is. On Question, Bill read a second time, and committed to a Committee of the Whole House.