Organ Donations

Baroness Merron Excerpts

Tuesday 12th December 2023 Lords Chamber

[Baroness Merron (Lab)]

My Lords, I pay tribute to my noble friend Lord Hunt, not just for securing this important debate and raising so many issues in a clear and methodical fashion, but for his work in taking the Bill through to fruition to become an Act. Of course, he continues to champion this very important cause, and for that, he deserves all our thanks.

Before the Organ Donation (Deemed Consent) Act came into force in 2020, it did receive cross-party support. Of course, there were concerns, but it was agreed across the parties that the previous law needed to be changed. The Act was praised as a key part of shifting the debate on the commitment to and resourcing of organ donation: an Act that would push forward thinking—that we should look beyond that legislation coming on to the statute book. As was highlighted then, and as we must highlight again now, the campaign to increase the number of organ donors did not end with the Act; it was always intended that the Act would push it forward, and that is what we are talking about tonight.

On the impact of the Act itself, the Government have already said in an Answer to a Written Question that

“it may never be possible to distinguish the true impact of opt-out legislation due to the impact”

of the pandemic. To some extent, that is completely understandable, because Covid-19 was disruptive in so many ways, but particularly with donation numbers decreasing by some 25%. However, perhaps the Minister can explain why, as time goes on and we are more distanced from the pandemic, that picture will not become clearer. Is it because Covid-19 disrupted attitudes towards organ donation, or because the disruption itself meant that processes were not put in place to correctly measure the difference? Or was something else going on? It would be helpful to understand that.

Is there a reason to believe that organ donation levels, putting the Act on one side, would not have evened out, either by now or at some point in the future. At what point should we be able to see the proper impact of the Act?

Regardless of the causes, it is, of course, as my noble friend Lord Hunt said, disappointing that the consent rate of 61% remains significantly lower than the predicted 78%, simply because there remain many more people waiting for organs than there are receiving them. In simple language, more donations are required.

Again, as my noble friend said, the latest NHS report said there were almost 7,000 people waiting for a transplant at the end of March, with almost a further 4,000 temporarily suspended from lists. This is an increase of 47% on the previous year, while the number of donors went up only 2% on the year before. This sadly means that some 439 people died who were on the active list, while a further 732 were removed from the list, mostly because they became ineligible due to deteriorating health. It is not a situation that we expected to see when the Act came in.

The noble Lords, Lord Allan and Lord Weir, spoke about families and their importance in all of this. It is interesting to note that the main reasons for families not supporting organ donation are: first, that the patient previously expressed a wish not to donate; secondly, that the family may feel that the length of time for the donation process is just too long; and, thirdly, that the family are not sure whether the patient would have agreed to donation. What is striking about that list is that none of those reasons requires further legal changes if we are seeking to improve the number of donors, especially where patients are unsure.

I think this debate has touched on that, and I would like to refer to two of the points that have already been raised. The first is about communication. During the passage of the Bill, the need for a comprehensive communications strategy and media campaign, as well as for increased resources for our healthcare structures, was raised, in order that everybody has the information they need to make what is a very important choice in an informed fashion. It would be helpful to hear from the Minister what the Government have been doing in these areas, particularly since the Act came into effect. What assessment has been made about what still needs to be done in terms of communication?

We know a number of people have said that the process is just too long. What is being done to make the process shorter and less burdensome, in order to reduce the number of people who opt out of choosing to donate organs for that reason?

The other area that has been raised in this debate and needs to be addressed is the disparities in representation in organ donation. NHS Blood and Transplant has stated that, despite an increase in the proportion of opt-in registrations from BAME donors over the past five years—with the work done to improve that engagement being praised, and we should add our praise to that—there remain under-representation and lower consent rates. So I hope the Minister can highlight what steps are being taken to deal with this continuing disparity, as well as the disparities that are so evident regionally. London has a consent rate of 51%, compared with 72% in the south-west. With the average in England and Wales being 61%, bringing regions such as London and the Midlands, with their lower consent rates, up to the average, could save lives.

Looking to the other end of the process, it is welcome that the Government announced earlier this year that they would be taking forward recommendations from the Organ Utilisation Group, to reduce the number of organs that are not properly utilised and to provide more consistency in the levels of performance and care that patients receive. While demand for organs exceeds supply, these efficiencies are especially important to tackle. So perhaps the Minister could also update your Lordships’ House on the progress in implementing these recommendations and, while I would not expect there has been any noticeable impact at this stage, what difference do the Government project that these changes will make?

For me, this debate is an important one; it keeps the issue in focus. I am sure that the Minister shares many of the concerns that have been raised this evening and I look forward to hearing his response on how we how we can work to save more lives through organ donation.