Organ Donations

Lord Hunt of Kings Heath Excerpts

Tuesday 12th December 2023 Lords Chamber

Asked by

[Lord Hunt of Kings Heath]

To ask His Majesty’s Government what assessment they have made of the impact on organ donations of the Organ Donation (Deemed Consent) Act 2019.

[Lord Hunt of Kings Heath (Lab)]

My Lords, I am very glad to have tabled this Question for Short Debate. I was honoured to take through the House my Bill, which became the Organ Donation (Deemed Consent) Act in 2019. In the year before the Bill became law, over 400 people died while waiting for a transplant and a further 755 people were removed from the transplant list as they were just too ill to receive a transplant. The Act aimed to increase the number of organ donations and save more lives.

The Policy Innovation Research Unit at the London School of Hygiene & Tropical Medicine is undertaking an evaluation for the Government on the implementation of the Act. It described the situation we have as a “soft opt-out” system, where it is presumed that people are happy to donate their organs after their death unless they have indicated otherwise or registered their decision to opt out. The principle behind the Act is simple: decisions not to donate should rest with individuals to make during their life, and families should not be able to make decisions on their behalf after they have died. The question is: has the Act made an impact?

My understanding is that there were just under 7,000 patients waiting for a transplant, with a further 3,800 temporarily suspended from the transplant list, at the end of March 2023. In 2022-23, 439 patients died while on the active list waiting for their transplants, compared with 429 in the previous year. A further 732 were removed from the transplant list, mostly as a result of deteriorating health and ineligibility.

NHS Blood and Transplant reported that:

“In 2022/23, there was a 2% increase in the number of deceased donors … and the total number of patients whose lives were potentially saved or improved by an organ transplant increased by 5%”.


Worryingly, its evaluation of opt-out legislation in England observed a consent rate of 61%, which was lower than the predicted post-legislative opt-out consent rate of 78%. We can conclude that, in England, while there has been a little progress, there is no evidence of significant change in consent rates in the initial years after implementation.

So what has gone wrong? I want to identify six issues. The first is whether the NHS is geared up to respond to higher deceased donor rates, if we can get them. The second is whether we have enough specialist nurses. They have the extremely difficult role to play of initiating discussions about potential organ donations with families, at a sensitive time. The family is still always involved in those discussions, but we know that investment in transplant co-ordinators is often cited as one of the key factors for Spain’s world-leading organ transplantation service. The third issue is whether we have a strong enough communications strategy. The Government committed £18 million to this but, in essence, Covid got in the way. It seems to have been left to patients themselves and the charities that support them, such as Kidney Care UK, to raise awareness of the Act.

The fourth issue is bureaucracy. While the Act covers some elements of deceased donation, it excludes less common organs, tissues and research. There are now multiple pieces of legislation and consent systems working in parallel, which provide a confused picture for those trying to operate the transplant service. The fifth issue is that there clearly needs to be a lot of work done to reverse the poor donor participation affecting patients with ethnically diverse backgrounds. Finally, we need to think further about the role of families. Although families no longer have a veto in law on organ giving, in practice they are still influential. This contrasts with other countries where opt-out systems are in place, where there tend to be fewer families vetoing the organ donations of their loved ones.

In advance of the evaluation that the Government commissioned, three reports have identified and looked at some of these issues. The first was that of the All-Party Parliamentary Group on Ethnicity Transplantation and Transfusion. Its recent report highlighted how the lack of donor participation affects patients with ethnically diverse backgrounds. It reports that a patient’s chance of surviving diseases such as blood cancer, and chronic conditions such as kidney disease, is heavily swayed by their ethnicity. On average, those of mixed heritage and from ethnic-minority communities wait longer for diagnosis and for the best donor to be found for their treatment. The APPG says that its key discovery is how hard it is to get sound data and what little progress has been made on this. The APPG thinks that our healthcare systems do not record ethnicity with the consistency or granularity necessary to be clear about the gaps in need and outcome of treatments.

Kidney Research UK echoed this in its 2018 report on the health inequalities of kidney disease, which found that people from ethnic-minority groups waited between 168 and 262 days longer for a kidney transplant than Caucasian kidney patients. I find that both remarkable and utterly unacceptable; think of the impact that must have on the life chances of those people waiting, on average, much longer for a transplant.

Coupled with that, Kidney Research UK pinpointed in a recent health economics report that demand for kidney transplantation could be as high as 12,000 per year by 2033. In the UK, the current levels are around 3,000—we have an awful long way to go there.

I will mention a final report produced last month by the Cystic Fibrosis Trust, which stated that organ utilisation is a key issue affecting transplant rates in the UK. It pointed out that in 2022-23 only 15% of donor lungs offered for transplantation were utilised. It also pointed to a February 2023 report by the Organ Utilisation Group—I believe Ministers have looked at it very carefully—which highlighted the unwarranted variation in practice between organ types and transplant units contributing to disparities in more general access.

I put the following questions to the Minister. First, is he satisfied that NHS Blood and Transplant and NHS trusts are putting sufficient priority into work on organ donation? Is NHS Blood and Transplant far too risk averse? Has it struggled to adapt to a soft opt-out programme? It looks to me as if it has continued to operate on the basis that the family needs to give consent. Secondly, does he think enough resources have been put into the programme? I particularly have in mind the specialist nurses who are the key professionals in the service in terms of relating to families, alongside transplant services themselves. Do we have continuous communications campaigns and, if not, should we not be prepared to invest some resource in stepping that up? Around that is the message of individual choice; is the choice to donate organs and tissues sufficiently clear to the public?

As patient support charities, including Kidney Care UK, are working across all regions to increase awareness and encourage those vital family conversations about organ donations, can we give those organisations more support?

Is the Minister satisfied that NHS Blood and Transplant is really grasping the opportunities that having an opt-out law can bring to increasing public awareness? During the progress of the Bill, I received huge support from its medical director. He came to briefings very enthusiastic about getting rates up, but I do not get that sense of enthusiasm from the organisation any more. Is it fully committed to taking advantage of the legislation?

Finally, are the Government cognisant of some of the issues that bureaucracy is causing?

I very much welcome this debate and look forward to hearing other contributions.