Organ Donation and Transplantation Strategy

Maria Caulfield Excerpts

Wednesday 23rd February 2022 Westminster Hall

[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.