Organ Donation and Transplantation Strategy

Dan Jarvis Excerpts

Wednesday 23rd February 2022 Westminster Hall

[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.

[Dan Jarvis (Barnsley Central) (Lab)]

I hesitate to intervene on the hon. Gentleman because he is making an excellent speech, but I wanted to take the opportunity to warmly congratulate him on securing this debate and bringing this important matter to the House’s attention. I should declare an interest as part of the team of people who took the legislation through the House—that was a genuinely outstanding cross-party effort and I am really delighted that we are proceeding now in that same vein.

The hon. Gentleman rightly raised concerns about the number of people currently on the waiting list; we are now at a five-year high and the pandemic and lockdowns have not been helpful. Does he agree that although legislation was, of course, very important, it is not enough in itself? What we need is continued public education and additional capacity within the NHS so that we can continue the important process of saving lives. I congratulate him again on securing this important debate.

[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.