Organ Donations
(5 months, 1 week ago)
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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.
Lord Weir of Ballyholme (DUP)
My Lords, I welcome the debate brought forward by the noble Lord, Lord Hunt, and the focus that it enables on this issue. I am supportive of the principle of the legislation that he brought forward, which balances out the opportunity for increasing those making life-saving organ donations, while still being wedded to the principle of voluntary decisions to donate.
In the short time available, I will concentrate on a point touched on by the noble Lord—the specific position of those suffering from cystic fibrosis. This covers about 10,500 people in the United Kingdom, and organ donation is particularly relevant to them because it is highly likely that the vast majority will require it at some point in their lives. Normally that is in the nature of a double lung transplant, but it can also have impact on organ donations involving the stomach. As he indicated, it is not simply a question of widening the pool of people willing to give a donation. The latest figures suggest that in 2022 there were 33 donors providing lungs within the system, but only six operations involving a lung transplant. The figure cited by the Cystic Fibrosis Trust makes reference to about 15%. That led, in part, to the Government’s establishment of their own Organ Utilisation Group, which reported in 2023 and highlighted a wide variety of practice in both the type of organs and between different units.
We have also seen barriers to utilisation that can happen for non-clinical reasons—for example, the absence of a theatre where the operation can be performed. Arising from that report were 12 recommendations. It would be useful if the Government could indicate whether they are committed to all 12 of those recommendations, and any progress they have made on their implementation.
With cystic fibrosis we concentrate very much on the issue of organ donation supply, but demand is also critical. We know that the modular treatment developed in the past few years can reduce the pressures of demand. Agreement was reached in 2019 between the NHS and those providing medications that lead to modular treatment. On the face of it, the initial reports suggest there is clear clinical evidence that it is of benefit. For example, 96 people joined the cystic fibrosis transplant waiting list in 2019, while in 2022 the figure was just 22. What is concerning is that the initial conclusion drawn is that this provides something clinically effective, but there is a question mark over value for money. It is critical that this be resolved, because it is leaving many families in a very difficult position.
This highlights that widening the pool of people giving consent for organised donation is critical for individual families. That is only one part of the picture—the other issues of utilisation of organs and demand is critical as well. That provides us with the full picture and jigsaw, and I am interested in the Minister’s response on those issues.
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.
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.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Markham) (Con)
I add my thanks, particularly for all the work that the noble Lord, Lord Hunt, has done, not just in bringing this debate today but, obviously, in putting the Act through in the first place. On a personal note, one of the pleasures of this job is looking into an area that is fascinating and something we are all involved in and have experiences of in our everyday lives. There are lots of hard things about the job, but sometimes these are the fun bits.
Coincidentally, I am visiting the NHS blood transfusion service’s Bristol operation on Thursday—so this is very timely. I will put a lot of these challenges directly to them. Obviously, I am speaking personally here, but what we have seen is a mixture of the disruptions of Covid and quite a change in the leadership of the blood transfusion service. The service has been undergoing quite some changes, and it would be good to test the temperature to see just how much it is on this.
One of the things I would probably like to do is set a challenge—“Where are you on this?” Maybe they will give us some fantastic answers; it is always best to hear things from the horse’s mouth. As I say, there is a relatively new CEO and maybe they will give us some fantastic answers and I can just report back to the House—that would be fantastic. I suspect what we really need to do is to say, “You have a couple of months”—or whatever—“to take this away. These are all the issues that were raised. Come back and make a presentation to us”. We could do that as a round table, because I think that is something we would all find illuminating—putting them through their paces.
The noble Baroness, Lady Merron, reminded us of the Churchill quote—it is not the end, or even the beginning of the end; it is the end of the beginning. My gut feeling is that the Act was almost a case of “Right, we’ve done this now and it will all look after itself”. Of course, there is a lot of underlying issues from there. We had Covid, and suddenly everyone was focusing on other things. This is why this debate is very timely: we need to turn our attention back on this and say, “Actually, now, thankfully, we are getting back to normal. How do we need to look at this?”
As many noble Lords have picked up, the real disparity seems to be in the involvement of the family. If the person has consented anyway through other processes, they are much more likely to follow those wishes and rates go up to 90%. If they have not given their consent, and so the family do not know, it is much more like 60% or 61%.
That real disparity, I have been told, means that we need to do comms campaigns all around increasing the level of people proactively going out to do that. It could be when they apply for driving licences or passports, or in other interactions. By doing that, it is much easier for the family; they know that that person made their wishes perfectly clear. As I say, 90% of the time the family then go with it, because they understand those wishes. That is really the thinking on the major facts in the comms campaign.
Within that, it is also about trying to make it as easy as possible. A new lens needs to be used for looking at the whole customer journey, for want of a better term, to make it as user-friendly as possible. The noble Lord, Lord Allan, mentioned some of his Facebook experiences about how you do this. There is a complicated process for which organs you can opt in and out on. Is that needed? Again, there is an argument for giving people choice. I am told that people have an aversion to giving corneas. They will approve a lot of things but are more disturbed by the thought of giving their eyes. I think people like having that choice, but this is almost about having a “yes to all” tick box as the automatic default option here.
Before I reply formally to some of the questions, another observation I make is that, although I am not saying that this should be driven by economics, the economics are clear: transplants save a lot of money as well, particularly in the case of kidney transplants. That is because you have people who are having a lot of dialysis and other treatments. In my research for this debate, I was told that the economics are very clear. It is worth investing in the resource behind this, because the transplant is not only much better for ongoing life; it actually saves the NHS money, because patients are not having to go for those future treatments.
I mentioned my meeting with the staff. The noble Lord, Lord Weir, made points about the recommendations of the Organ Utilisation Group. I am told that DHSC, the blood transfusion service and NHSE have accepted those recommendations and are working towards ensuring that they are implemented. A lot of the time, this is about trying to make sure that we are maximising it. As the noble Baroness, Lady Merron, said, it is not just the number of people who consent but the utilisation. They have managed to increase the number of organs used to about two and a half per person right now. It is about not just converting those people who have consented but how you utilise it, so they are working on that.
On the resource for this, at the moment there are 330 specialist nurses—it is accepted that you need a specialist nurse to do this—and 55 clinical leads. Clearly, that should be one of the things we challenge when we meet on this, given that the economics are clear. On the marketing, again, attention is being turned more towards that. After Organ Donation Week, the impact of that campaign was a 22% increase in registrations. As I said before, it was very much focused on trying to persuade people to proactively go out and consent, because it is much more likely that the families will go along with that when they do so.
There are a lot of small things in this; there is no silver bullet. It is about trying to get across them all. As was mentioned by the noble Lords, Lord Weir and Lord Allan, there is quite a disparity for black and ethnic-minority people, which we need to understand further. I was wondering about the point made by the noble Baroness, Lady Merron, on the disparities between regions. My hunch when looking at that sort of data is that there are younger populations in London and the Midlands and an older population in the south-west, so is there something going on with the age profiles? Perhaps those are driving a difference in behaviour, so maybe the comms campaign needs to try to target certain people some more.
Some international comparisons were mentioned. For me, the biggest lesson is in another point made by the noble Lord, Lord Allan: these things are so cultural as well. From my understanding, it took Spain a good 10 years or so to really do this. We need to think about all those cultural aspects in our campaigns. Just saying, “Now that we’ve changed the Act, it will go ahead and happen” is not a silver bullet. What we have really learned from all this is, as the noble Baroness, Lady Merron, said, that it is just the start. It is not the end of the journey. As the noble Lord, Lord Allan, said, it all comes down to trust in people—and trusting that the process is all there.
I hope I have managed to pick up most of the questions as I have gone through this. To me, the biggest thing is about putting the challenge down to the NHS blood transfusion service and giving it the time to do it properly. We can then invite its people back, and at that point we could invite all the noble Lords who are here today. I really appreciate this being brought up today, as we could do a lot more on it.