Organ Donations

Lord Allan of Hallam Excerpts

Tuesday 12th December 2023 Lords Chamber

[Lord Allan of Hallam (LD)]

My Lords, I am very grateful to the noble Lord, Lord Hunt, which takes me back more than a decade to when I worked at Facebook. That may seem like a weird connection, but back in those days when Facebook was connecting people for social good—before we went on to destroy democracy—one of the programmes we ran was encouraging the uptake of organ donor registers. There were people connecting on the social media platform to arrange donations and we extended that and said that it was great to use our platform to get out there and encourage people to sign up. There was a slight flaw in that this was all designed from the US perspective, where of course it is an opt-in register that you sign up to when you get your driving licence. That worked for the US because nearly everyone has a driving licence, but when we tried to roll it out across the world I had to tell colleagues that the US model is not always present. We started to look at the variation across different systems and recognised that there was opt-in, opt-out and 99 different varieties of organisational structures for organ donation.

Fast forwarding to where we are now, the law has certainly moved on since those days, not least thanks to the efforts of the noble Lord and others who took through the law change in England. As he pointed out, a lot of those shifts in the law are predicated on assumptions about an uplift that will happen. He cited the figures, which I also saw, that there would a shift from 61% of people consenting to donation to 78%, yet the numbers show us that it has not happened and that the change has been much less dramatic.

Of course, Covid intervened, so the data we have, for England in particular, is not especially helpful and will not be for a little while as we get back to more of a “business as usual” situation. But there is really interesting data from other countries. Part of the fascination of being a spokesperson in this place is that it does encourage you to learn and read about things that you did not understand before, and to take that curiosity.

I found a fascinating 2021 paper from an academic called Harriet Etheredge in the Risk Management and Healthcare Policy publication, which I recommend, if noble Lords have not read it. She goes through the difference between opt-out and opt-in systems in a very readable and accessible way. The short version of her summary is that a shift to opt-out is not the silver bullet many people hope it will be. Rather, she concludes that actual rates of donation—which is what we are concerned about at the end of the day, not the rates of who has opted in or out; it is ultimately about the number of organs that end up being donated—relate to many other factors in a country’s healthcare system. She says it is very much about looking at specific local barriers and building local trust.

I want to build on the comments of the noble Lord, Lord Hunt, and to address the specific barriers in England in particular—that is what we are talking about in this debate—thinking about what builds trust in England.

The data in the House of Lords Library note, which was again helpfully supplied for this debate, tends to reinforce the view that it is not all about opt-in or opt-out. It tells us that the top-rated countries are the United States and Spain, the United States being an opt-in country. In the paper, Spain is described as not pure opt-out; it is seen as an opt-out country but in fact it is more of a hybrid model. Again, as the noble Lord, Lord Hunt, described, the Spanish example is very instructive because it is not necessarily the register that has got Spain to those levels. Academics suggest that it took Spain 10 years from moving to the hybrid opt-out model to get to those high rates. It got there by investing in the transplant services and in family counselling in particular, in order to get ahead of the moment when a decision is made. When you know someone is likely to be a donor, you start the conversation with the family at that stage, so that when the decision has to be made, a lot of the work has already been done and people have a much greater level of understanding.

Harriet Etheredge does, in passing, talk about the hard opt-out model whereby families cannot overrule— I think that was introduced in Brazil—but suggests that there was a significant backlash. So, there are major concerns about a model whereby families cannot overrule if there has not been an express wish. That is worth considering. I can instinctively see why it does not take many negative stories about families who really object to being overruled for the whole system to fall into disrepute; that was certainly the situation in Brazil.

The paper looks at other national situations. Harriet Etheredge highlighted Singapore, which is interesting because it is ethnically, religiously and culturally very diverse. Referring again to the comments of the noble Lord, Lord Hunt, there may be some really interesting lessons to learn from Singapore. It has an advanced healthcare system, but people’s social attitudes are quite diverse. For example, it has a large Islamic community, which has traditionally been more sceptical about and had more concerns about organ donation. Singapore has managed to work through those, and there may be something important for us there.

The importance of education and trust in the system cannot be overstated. That is particularly true for the families. We can educate ourselves, as potential donors, but the other critical parties are the families who are sitting around us if ever it comes to the point when that donation may be about to be made. Perhaps we do not focus enough effort on educating families about how they should approach that situation. They are in an incredibly distressed state at the deathbed of a relative, and that is the time to finish the conversation about organ donation, not start it. A lot of education upfront would be very useful.

It is essential to have staff who have the time to do this very labour-intensive work; again, the noble Lord, Lord Hunt, talked about blood and transplant services. It is incredibly labour-intensive to sit with people for perhaps hours as they say, “Yes. No. Yes. No”, going backwards and forwards, as we all might do in that situation. That is not something our NHS is traditionally geared up to do; it is more a case of “make a decision and move on”. Co-ordination is also labour-intensive; it is very on/off, and it requires many hours of people’s time. I will be interested to hear from the Minister where this fits into the workforce plan, given that we need this particular skillset and capacity.

The other key flag raised relates to transparency and accountability. If we are going to have public consent, there needs to be some understanding of the system as a whole, not just individual decisions. We can see how trust can be lost, given the range of stories we read every day about organ harvesting, unfair access to transplants, failed transplants and so on. We need to be mindful of that: for people to buy into the system, they have to see that the benefits outweigh the negatives. We all understand why, in many cases, the negatives are more newsworthy, but I do worry that trust is lost. Every time there is an organ harvesting story, we may say that that has nothing to do with the NHS and organ transplanting, but people out there start to associate transplants with something dark and negative, rather than positive and life-giving. I will be interested to hear how the Government intend to address that.

It would be unwise to assume that everybody will always see transplants as a priority. This touches on the points made by the noble Lord, Lord Weir. A double lung transplant, for example, requires a huge amount of resource. Probably all of us involved in this debate believe that we need to make that investment, and that it is a valid one for the NHS. But in order for people to understand the system as a whole, the Government need to keep repeating why investing in transplants—which will benefit a small number of individuals compared to other services that will benefit many more people—is critical and deserves to happen.

The noble Lord, Lord Hunt, set out six brilliant areas of focus, and I hope the Minister is able to work through those and, in his usual fashion, give us some meaty responses.