My Lords, first, I congratulate the noble Lord, Lord Hunt, on his appointment to the General Medical Council. I do not know whether I should also sympathise with him—I hope it bodes well for the GMC—because he certainly needs it.
I support the Bill, which proposes new opt-out legislation for the organ donation register. It is not a position I have held before when I have previously spoken about deemed consent, but I have had a change of mind.
Before I go any further, I am very pleased to see that the noble Lord, Lord Elder, will speak in this debate. I very much look forward to his contribution. I also put on record my gratitude to all those involved in organ donation. Every transplant is a reflection of the exceptional altruism of the donor and their family, and a testament to the care and hard work of many in the hard-pressed NHS. This has led to the organ
donation and transplantation numbers reaching an all-time high. Last year, for the first time ever, 5,000 people benefited from a transplant in a single year.
Despite this, several challenges remain. As we have already heard, there is an increasing gap between the number waiting for a transplant and the number of organs available. Every day, three people who are in need of an organ die. As of 15 November 2018, 6,163 people are on active waiting lists for an organ. Over 300 are children, and over 300 are in need of a new heart. Change in legislation may not by itself be the magic wand, but together with other necessary measures, it may well begin to narrow the gap between those on the waiting lists and the number of organs available.
There is also the challenge of the huge imbalance between the number of people in black, Asian and ethnic minority communities who are in need of a transplant, and the number of suitable organs available for them. More organs from these communities are needed, as blood and tissue types must match, particularly for things like kidney transplants.
Surveys suggest that opt-out legislation leads to higher rates of organ donation, but at the same time, evidence of direct cause and effect is lacking. Clearly, as has already been mentioned by the noble Lords, Lord Hunt and Lord Lansley, other factors must also play an important part in raising the numbers. We need to be aware of what these might be. I agree with the Nuffield Council on Bioethics when it says that opt-out systems can be ethical,
“if people are well-informed, families are appropriately involved (well-supported … ), and trust in the organ donation system is not compromised”.
This means that this Bill must pay serious attention to three key areas. The first is a well-informed public: the public should be informed on an ongoing basis—that point has also been made. Information about organ donation should be easily available.
The second area is the importance of families: families must stay at the heart of the decision-making process. In this respect, the role of the specialist nurses is crucial—again, this has already been emphasised. We need to make sure that there are enough specialist nurses available, as they play an important role at a very sensitive time in families’ lives, both for the donor and the recipient of an organ.
The third area is the importance of maintaining trust in the organ donation system. Public information on the new system will need to be backed up by the continuous education and training of the health professionals involved.
Let me now turn briefly to the challenges in relation to black and Asian communities and organ donation. Over 1,800 patients from black and Asian communities are on the waiting list for organ donation. Some 901 received a transplant last year, but had waited much longer; 114 people donated organs. Some 35% of the total number of patients waiting for kidney transplants are from black and Asian communities, partly because of the increased rates of diabetes and renal disease that occur in these communities, and partly because kidney transplants require a closer matching of blood and tissues than other transplants.
It is important that these communities understand what opt-out means, and that they are involved. While the government campaign will focus on black and Asian and other ethnic minorities, it will require a sensitive approach on the back of opt-out legislation, providing culturally sensitive information, a targeted awareness-raising campaign, and issues that need to be addressed to gain the trust that will be required.
This legislation is widely supported by the medical and other health professionals and charities, particularly those such as the British Heart Foundation, and we should support it too. I hope that the House will not hold it back.
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