Organ Donation and Transplantation Strategy

Jim Shannon Excerpts

Wednesday 23rd February 2022 Westminster Hall

[Anthony Mangnall (Totnes) (Con)]

I beg to move,

That this House has considered the organ donation and transplantation strategy.

It is a pleasure to serve under your chairmanship, Ms McVey. I thank the Backbench Business Committee for granting the opportunity to debate the important topic of the organ donation and transplantation strategy. I also thank the Minister and her departmental team for their responses to my inquiries about organ donation on behalf of my constituents. Their answers have been detailed, helpful and reassuring.

In the time I have been in this place, I have learned that Westminster Hall debates are not always used to be helpful to the Government and are often used to point out their flaws and failings. I may be guilty of having done that once or twice myself, but I want to use this debate to do three things. First, I want to congratulate the Government on the steps they have taken thus far, most notably with the Organ Donation (Deemed Consent) Act 2019. Secondly, I want to encourage further education and awareness around organ donation. Thirdly, I want to explore future steps that the Government can take in relation to organ donation and transplantation strategy.

In May 2020, the law around organ donation in England was changed to allow more people to save more lives. The Organ Donation (Deemed Consent) Act, which many hon. Members present supported, changed the law to mean that an individual agrees to become an organ donor when they die if they are over 18, have not opted out and are not in an excluded group. The Government’s legislation brought us more into line with other countries but, more importantly, the number of available organ donors increased dramatically, while the number of people opting out of the opting-in initiative only slightly increased. Pre opt-out—before 5 May 2020—the UK had 26,037,200 registrations, whereas the total UK opt-in registration was 27,594,279 on 13 February 2020. By comparison, fewer than 1.5 million people opted out before 5 May 2020, with the total number now standing at 2.3 million. These numbers show that in less than two years, we have had a sizeable increase in the number of potential organ donors, while only a small percentage of the population have chosen to opt out of the initiative.

NHS Blood and Transplant launched a public awareness campaign in April 2019 to inform the public about the prospective law change and the choices available to them. An evaluation of that campaign found that over 75% of adults in England were aware of the new system of consent. The third year of the campaign, which I believe comes to an end in March 2022, looks to encourage people to talk to their families and loved ones about organ donation and their organ donation decisions. With consent rates currently at 68% across the UK and 78.8% in the south-west, it is particularly welcome to see the Government state their ambition to increase consent levels to 80%. A 12% increase is likely to result in approximately 700 more transplants per year and countless lives saved.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Gentleman for securing the debate. The hon. Member for Barnsley Central (Dan Jarvis), who is present, the former MP Geoffrey Robinson and I were part of the team that worked to get the organ transplant legislation changed. As a member of the Democratic Unionist party, I was always in favour of the opt-out. I am very pleased to say that my party saw the light and supported that line of thought. With Northern Ireland and other countries in the UK having passed legislation to adopt the choice to opt out of organ donations, does the hon. Gentleman agree that now is the time for a UK-wide strategy to ensure that no organ is lost because the system does not efficiently make the most of the connectivity between each region of the United Kingdom of Great Britain and Northern Ireland?

[Anthony Mangnall]

I am always delighted to take questions from the hon. Gentleman. I absolutely agree that if there is parity in all four corners of the United Kingdom, there is an opportunity to ensure that all citizens can get the organs they need; that they can get on to the register where possible; and that there is a developed and comprehensive transplantation strategy across the country. I understand that the hon. Gentleman went further than his party and was by far one of the earliest supporters of the opt-out initiative. I know to my heart that he was a pioneer in leading his party and getting them to where they needed to be to see the changes in Northern Ireland. I am grateful for his question.

As I was saying, the Government and the NHS should be proud of the campaign that they have run to date, and the undeniable progress that it has delivered. That brings me to my second point: the organ donor register. I am sure that all colleagues here today will agree that it is essential that we encourage as many people as possible to sign up to the organ donor register. As of 31 March 2021, 38% of the population had joined the register, while 3% had opted out. Initiatives are already in place to increase registration, with a number of routes available, whether through the Driver and Vehicle Licensing Agency, the NHS app, applying for a Boots advantage card, or even through the NHS Blood and Transplant organ donation website, which, just for clarity, is at www.organdonation.nhs.uk.

It is vital that we continue to keep as many avenues open as possible, and that the campaign continues to be fully supported and championed by the Government. With that in mind, I ask the Minister what plans are in place to continue to raise awareness of the organ donor register and to encourage continued conversation and education around organ donation. Secondly, would the Minister consider extending the scheme to include other official forms? That might include, but not be limited to, those signing up to the electoral roll or giving blood.

The organ donor register moves an individual’s organ donation from a passive decision to an active one. For every individual that decides to sign up to the organ donation website, they are providing a record of their consent to help save lives should the unimaginable happen to them. Importantly, by signing that register, individuals are providing an affirmation of their desire to be an organ donor, which I hope that their family members and loved ones will honour—I will touch on that again shortly.

As of 13 February 2022, there are 6,157 people waiting for an organ transplant in the UK. Even the large numbers that I have buried the House in thus far hide the fact that there is a shortage of donors in the UK. Between April 2020 and March 2021, in the UK, there were a total of 1,180 deceased donors and 444 living donors, which resulted in 3,391 lives being either saved or dramatically improved by an organ transplant. However, 474 people died while on the active waiting list and a further 693 were removed, primarily because of deteriorating health. Of course, I accept the varied reasons why people come off the list, but the numbers provide an indication that while the situation is improving, there is still work to be done.

The NHS Blood and Transplant strategy, “Organ Donation and Transplantation 2030: Meeting the Need”, published on 1 June, calls for a highly public campaign broadening the settings in which people might find information around organ donation. It also includes six key points: making living and deceased donation an expected part of care; developing and pioneering new technologies and techniques; ensuring recipient outcomes are the best in the world; ensuring that people of all backgrounds and circumstances have timely access to the organs they need; maintaining a sustainable service across the UK; and building a pioneering culture of research and innovation in donation and transplantation in the UK. I ask the Minister how those six action points are being monitored, and how often they will be reviewed. Furthermore, does she feel that anything should be added to those points since the introduction of the 2019 Act?

Although I promised to be positive and congratulatory about the Government’s action on this matter, I am aware of a few areas relating to organ donation that are causing some concern. As mentioned already, under the 2019 Act, and specifically the opt-out system, all over-18s—albeit with a few caveats—are considered to become organ donors when they die unless they opt out. An individual can also actively register, as I have mentioned already, through the organ donor register. However, a family member or loved one can—and often does—overrule the donation of an organ in both instances. As mentioned already, the consent rate for eligible donors was 68% between April 2020 and March 2021, meaning that loved ones, for various reasons, refused to support 32% of potential donations. That equates to 695 donors.

There are myriad reasons why consent for deceased donors might not be given: the patient expressing a desire not to donate, but not opting out; a lack of desire for further surgery on a body; a feeling that the patient had suffered enough; the fact that the process takes too long; or the fact that the donation was against religious beliefs. Of course we must respect the decisions and views of family members and loved ones; staggeringly, however, 10.2% of those 32% of organ donations were refused because family members were unsure about whether the patient would have wanted to donate. Surely that clearly shows the continuing need to have a conversation and actively encourage greater sign-up to the organ donation register. In actual numbers, that 10.2% equates to 71 individuals whose organs might have helped to save a great number of lives. Of course, I make no judgment about those families and the decisions that they take in incredibly difficult circumstances, but there is an opportunity for us to go that little bit further and help save those extra few lives.

With that in mind, what progress has been made with the Leave Them Certain campaign mentioned in the NHS Blood and Transplant strategic plan, which I referenced earlier? I understand that the Human Tissue Authority guidance specifically states that families will always be consulted and that scrutiny is needed in the process. However, where possible we should be trying to eliminate the second-guessing and possibility of going against the deceased’s final wishes.

I asked for this debate because among the regular correspondence that I have had with constituents on the matter of organ donation, I have had the incredible good fortune of having been introduced to Sarah Meredith and her family. Sarah is a 29-year-old constituent who lives with cystic fibrosis. Thanks to the approval of the drug Kaftrio, Sarah and thousands of others living with cystic fibrosis can look ahead with an improved degree of certainty and a greater quality of life. However, that wonder drug does not solve all the difficulties of living with that disease; Sarah needs a liver transplant.

Over the course of the last two years, I have met Sarah’s mother Cathy and sister Jessica to hear first hand about the ailments from which Sarah suffers and some of the problems that they have identified within our transplant system and the wider regional disparity when it comes to healthcare services. I have already highlighted some of the concerns around organ donation, but I would like to add a few words about healthcare infrastructure. The organ utilisation group, chaired by Professor Stephen Powis, was established by the then Health Secretary, my right hon. Friend the Member for West Suffolk (Matt Hancock), to provide recommendations that would deliver improvements in the number of organs accepted and successfully transplanted; to optimise the use of existing skilled workforce investment in infrastructure; to support innovation in the field of organ transplantation; to standardise practices across the country—a point made by the hon. Member for Strangford (Jim Shannon); and to provide equity of access and patient outcomes. I look forward to seeing the recommendations, the report when it is published—in March, I believe—and the Government’s response.

Will the Minister come before the House when the report is published to take questions from Members interested in this topic? Although the south-west can boast a high consent rate—it is only slightly off the Government’s 80% target—we are at something of a disadvantage when it comes to liver transplant units across the region. There are just eight such units in the UK, including one in a children’s hospital. The liver transplant centres nearest my constituency of Totnes in south Devon are in either London or Birmingham.

I have heard anecdotal and first-hand accounts about ill patients who have been asked to make the journey to London from south Devon for a transplant, only to arrive and discover that the organ they were expecting has deteriorated and is no longer suitable for transplantation. One can only imagine how awful that journey is in both directions in that situation. I understand that there is a new national programme to expand the number of living transplant centres across the UK and that the north-west and south-west are two priority areas due to a lack of existing transplant infrastructure. Will the Minister reassure me and all those across the south-west who are hoping for an improved service that this new programme will be rolled out at pace? It is clear that many cannot wait.

[Anthony Mangnall]

I thank the hon. and gallant—and mayoral—Member for his intervention. He has been an extraordinary champion on this matter; a significant amount of my research has been on the back of his words in this place to help to get that legislation to where it needs to be. On his point about education, I think he is absolutely correct. We need a combination of education and funding across all our hospitals, GP surgeries and other available forums to promote this issue so that we can bring down that five-year high and help to get as many people as possible off the transplant list, as quickly as possible.

[Jim Shannon]

I want to say for the record that my nephew—my brother’s son—had a kidney transplant; he was born as a wee child with a kidney the size of my thumbnail. He had to wait until he was almost 16 before he got a transplant, but he got it, and today that young man has a full life because of that. If anyone ever needs evidence—I know we all have some—of what a transplant can do, I can speak personally to that.

[Anthony Mangnall]

As ever, I thank the hon. Gentleman for his powerful intervention. He uses personal experience to lend great weight to a very serious topic, and that has certainly been registered by me and by the House. As we develop more and more strategies, as I hope we will, to encourage more and more to sign up on the organ donor register, people will hear his words, among those of others.

We are often quick to say that other countries have it better than us. While I am not suggesting that that is the case—especially thanks to the remarkable improvements that have been made over a short period of time—I will ask the Minister a final two questions. First, what engagement and consideration has the Department of Health and Social Care given to other countries’ organ donation and transplant strategies? Spain is often mentioned, and I would be interested to hear whether there is any consideration of that model and whether we can learn anything from it.

Secondly, the transplant benefit score also determines the position in which a patient might sit in relation to receiving an organ. How is that position altered when a new drug is used on a patient, presumably—one hopes—improving their situation? It would be interesting to understand whether the transplant benefit score is quick enough to determine where they are on that list.

The Meredith family are a fantastic group of campaigners for organ donation, and they are the reason why this debate is happening. I hope that their efforts in pushing me and others will result in renewed campaigns to make people aware of the organ donation register and to improve access to transplant facilities in the south-west. I very much look forward to hearing the Minister’s response.

[The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)]

It is a pleasure to serve under your chairmanship, Ms McVey. I thank my hon. Friend the Member for Totnes (Anthony Mangnall) for securing this debate and for being such a passionate champion for organ donation and transplantation. Having helped the hon. Member for Barnsley Central (Dan Jarvis) with the legislation, my hon. Friend is not just sitting on his laurels, but continuing with the campaign, because, as has been said, the legislation on its own is not enough to make a difference.

I also thank all those donors and their families who, at a very difficult time in their lives, have to make incredibly tough decisions. Even with the changes in legislation, it is an incredibly difficult time for them. Hon. Members will know that the 6,000 patients across the UK who are today waiting for lifesaving transplants are incredibly grateful for those who donate. The estimate is that every donor can save around nine lives, so it really does make a difference. More than one person a day sadly dies on the waiting list, so it is crucial that organ donation continues to be a high-profile issue.

It is nearly two years since the introduction of deemed consent for organ and tissue donation, known as Max and Keira’s law. All donors are now considered potential organ and tissue donors after death unless they make a decision that they do not want to donate. As my hon. Friend has said, among all the families approached since May 2020, the consent rate is about 66%. It could be higher. It is a good figure—much better than where we were—but there is still a lot of room for improvement. However, it has led to 296 organ donors and resulted in 714 organs being transplanted: we cannot overestimate the difference that has made to the individuals who received those organs and to their families.

If people wish to opt out, they can do so: currently, 27 million people have opted into the UK organ donor register and 2 million have opted out, so there is flexibility there. However, for many people, there is still a lack of awareness that a register exists, and very often they have not had those conversations with family members. Should the time come when, unfortunately, an incident happens and organ donation needs to be considered, families play a crucial role throughout the donation process, both helping NHS staff understand the wishes of the deceased and ensuring their organs are suitable for transplantation. As my hon. Friend the Member for Totnes has pointed out, it is really important that we continue to have national conversations about organ donation, so that if the time comes, the family of the deceased person are aware of what the issues are. Even with an opt-in and opt-out system, that conversation should take place well in advance.

At difficult moments, both families and NHS staff who may be working in A&E or in different clinical units may not feel comfortable having that conversation. When the family are struggling to come to terms with the fact that their loved one is on the register, but they are not happy about that, those are very delicate conversations to have, and it is important that staff are supported as well. The views of the family will always be taken into account: even though they cannot revoke legally valid consent, they will have an influence; as we heard from my hon. Friend, that is having an impact and meaning that some donations are not happening.

The role of the specialist nurse in discussing the matter sensitively and helping to understand some of the family’s concerns is important and that role needs to be facilitated wherever possible, because that can make the crucial difference between the family accepting the decision of their loved one and not coming to terms with it. We need to make that conversation routine and build awareness, because a 32% impact on the loss of organs into the system for donation is a very high figure.

NHS Blood and Transplant, which is responsible for organ and tissue donation across the UK, has launched the new UK-wide organ donation strategy, the main aim of which is simply to increase organ donation and transplantation. My hon. Friend the Member for Totnes asked what work is being done to raise awareness: we have organ donation week in September, and last September that led to the Leave Them Certain campaign. That campaign aimed to reinforce the role of the family and normalise people sharing their organ donation decision with family members so that, if that discussion needs to happen, it does not come as a shock. We are also introducing organ donation and transplantation into the school curriculum, because it is important to start that conversation early on, and aiming to promote awareness in young people about not just their own decision, but that of their other family members.

There was a multimedia campaign on Valentine’s day this year—my hon. Friend might have been busy on Valentine’s day; I do not know—to encourage families to have a heart-to-heart discussion about organ donation. There were 300 people waiting for a heart transplant on Valentine’s day, including more than 40 children, so it was thought crucial to raise awareness on that day, but we can all do our bit when it comes to promoting the need for organ donation. World Kidney Day is 11 March, which will provide us with another opportunity, but I am very happy if my hon. Friend wants to apply for another debate this coming September to hold our feet to the fire in making sure that we are driving up organ donation numbers.

I want to touch on health disparities, because some communities are struggling more than most when it comes to organ donation. Black and Asian communities face significant shortages and significantly longer waits—around 10 months longer than the general population—and much of that disparity is due to the lack of donation in those communities. There is a whole host of reasons why that is and, as my hon. Friend the Member for Totnes has said, this is not about judging those who do not donate: it is about increasing awareness of the difference that organ donation can make to people’s lives. Alongside other stakeholders, such as the National Black, Asian and Minority Ethnic Transplant Alliance and all the main faith organisations in England, we are actively trying to tackle some of the concerns of particular groups and communities around organ donation. We are raising awareness and promoting the work that can be done.

I am particularly concerned about the point that my hon. Friend mentioned about provision for living donations in the south-west, and the logistics that sometimes lead to donations and transplantations failing. If someone is willing to donate an organ, we should make every effort to ensure that it becomes a successful transplant. I will take away his point and look at some of the factors that might be influencing that situation.

Covid has had an impact on the service. As we heard from the hon. Member for Barnsley Central, the waiting list is higher than it has been in past, but I am pleased to say that organ donation and transplantation has now mostly returned to pre-pandemic levels, although there is a backlog of people to get through.

[Jim Shannon]

In my intervention, I referred to the need for co-ordination between the four regions, so that no organ could or would be lost. There was some discussion in the newspapers, although I am not sure of the evidential basis for it, that said that some organs had been lost during the covid pandemic. Let us make sure that does not happen.

[Maria Caulfield]

The hon. Gentleman is absolutely right. We need to ensure that we tackle any practical or logistical issues; I am happy to look at that. If there are particular regions where the centres are difficult to access because of the distances involved, then we absolutely need to consider that.

I take on board the points made by my hon. Friend the Member for Totnes about improving the ability of people to sign up for the register, whether through the electoral roll or through other mechanisms; we want to make that as easy as possible. I am convinced that there are groups of people who would be very happy to donate, but we need to make it as easy as possible for them to do so.

I will look at international comparisons. If there are lessons to be learned from other countries, let us not reinvent the wheel but gain some knowledge from them.

I thank all hon. Members for taking part today, particularly my hon. Friend the Member for Totnes, and I thank the Meredith family, who are driving this campaign forward and are the reason for the debate today. We are making huge progress. The legislation has made a big difference, but there is lots more we can do to ensure that people are not waiting on the transplant list any longer than they need to.

Question put and agreed to.