Alex Norris – 2020 Speech on Organ Donation

Below is the text of the speech made by Alex Norris, the Labour MP for Nottingham North, in the House of Commons on 19 May 2020.

I have to say that I am used to clearing rooms when I start speaking, but this is quite impressive even by my own standards. Nevertheless, it is a privilege to make my debut at the Dispatch Box as shadow public health Minister on a topic as important as this one. Currently, everything we are addressing is a matter of life and death, but when we are talking about critical transplants, that could never be clearer.

I thank the Minister for everything she is doing during this crisis, not only on this particular issue but on everything related to protecting us from the coronavirus. She and her ministerial colleagues are working around the clock and have been doing so for weeks; we appreciate that.

This is my first opportunity to express publicly in this place my thanks to our NHS and social care staff for all the wonderful things that they are doing in my community and communities up and down the country to keep us as safe as possible.

We clap with you on a Thursday, but we think about you always and we are really grateful for everything you are doing.

The transplant of organs and human tissue changes and saves lives. It brings hope, it can bring happiness and it is the ultimate altruistic act. The Organ Donation (Deemed Consent) Act 2019 promises a significant breakthrough in the ability to save and change lives. Those who campaigned for it spotted the public mood and understood the British people on this issue. However, a key part of understanding that fundamental desire of the British people to do well by each other is to understand that this change has to hold within reasonable limits. It is therefore right that we are completing the process today and setting out clearly the sort of tissue that goes beyond routine transplantation. That is a critical part of maintaining public confidence in the process.

The Opposition supported the Act during its progress and we support the regulations before us today. We have many people to thank for last year’s Act. I will start by thanking Geoffrey Robinson, the former MP for Coventry North West, for introducing the Bill. His legacy in this place is significant on a number of issues, and this legislation will certainly have long-lasting and far-reaching implications. I also thank my hon. Friend the Member for Barnsley Central (Dan Jarvis) for taking up the baton in 2019 and getting the legislation over the finishing line—he continues to be an excellent champion of the Act, and I think we will hear from him shortly—and, in the other place, the noble Lord Hunt for his stewardship of the legislation.

Of course, I also pay tribute to Max Johnson and Keira Ball, after whom the Bill was known. Keira tragically died in a road accident, but her heart saved Max’s life at age nine, after an eight-month wait. They are truly inspirational and a huge part of why we are here today, as indeed is everyone who supported the campaign, not least the Daily Mirror and its readers. Each and every supporter has helped to bring us here today to do this important job.​
It is impossible to talk about anything, especially anything health related, without referencing the coronavirus outbreak and its effect on all aspects of our lives. However, it is particularly pertinent when we talk about transplants, so I will touch on it now before getting into the substance of the regulations. From 1 April to 10 May, 155 transplants took place in the UK from deceased donors. In the previous year, that figure was 404, a drop of more than 60%. There have been no transplants at all from living donors, which usually make up close to a fifth of the total, and current waiting list figures will not accurately reflect the need that may have been created for organ transplant due to the pandemic, which will only cause greater strain in future months.

I do not say these things to criticise the Government. Kidney transplants are the most common form of transplants, and in answer to a written question, the Minister for Care shared with me the fact that the early data show that both dialysis patients and those who are immunosuppressed through a transplant are more vulnerable to covid-19. The fact that transplants have been taking place at all therefore suggests that decisions are being made on the balance of need and on a case-by-case basis, an approach that I think we would all support. However, we know that, as the Minister said, patients were dying on the transplant waiting list even before the outbreak because the supply of donor organs failed to meet the demand. Fewer transplants quite simply means that the mortality rate will increase.

What assessment has the Minister made of the impact of covid-19 on the mortality of patients waiting for transplants, and what plans do the Government have to deal with the increasing backlog? I have raised this issue with her colleague, the Minister for primary care and public health, in relation to cancer and have not yet heard clear answers. We need to know what efforts the Government will be making to deal with the bubble challenges that will be coming through the system in future weeks and months. The Minister in the other place talked yesterday about a tremendous effort to restore transplant services. Will this Minister take the opportunity today to outline what the recovery plan is likely to look like and what the timeframes will be?

At the beginning of the coronavirus crisis we all talked of it as a great leveller and said that the virus would not recognise our differences, but we have seen in the weeks and months since just how much that is not the case. The coronavirus has exposed what many Opposition Members have said for many years. Britain is an unequal country, across regions, across gender and across protected characteristics. These inequalities are terrible for our nation’s health, and tackling them must be a post-covid priority.

The black, Asian or minority ethnic community suffers particularly when it comes to transplants. In 2018, 21% of those who died waiting for transplants were from a black, Asian or minority ethnic group. There is a higher chance of a successful transplant if the organ comes from an individual of the same ethnic background, but that means that those from black or Asian backgrounds currently wait six to 11 months longer for an organ match. This inequality will not do, and there have to be practical things to change it, starting immediately. The culture change that the Minister talked about is at the heart of that—us all having those conversations with our loved ones—but we know that we have to be doing ​something specifically different to reach those communities experiencing the most unequal outcomes. For that reason, I would like to press the Minister on something her colleague in the other place said yesterday. He said that the Government would be following up with an awareness campaign aimed at BAME audiences. Can the Minister give a firm commitment today that this will take place, tell us when it might happen and critically—I had this conversation frequently during my time in local government—confirm that it will be developed by BAME communities, rather than on their behalf? If it is to be effective, it will have to be different from how it has been in the past.

A key aim of the 2019 Act, which the regulations will, I hope, supplement today, was to reach an 80% consent rate in England. This will take time but certainly seems possible. In Wales, where the opt-out mechanism was implemented by the Welsh Labour Government in 2015, the consent rate has risen from 58% to 77%. In England, we start from a base line of 67%, so we are better placed, and if we reach the target, we are talking about as many as 700 more transplants a year—700 lives that can be extended, transformed or saved. The Minister has been challenged on the timing of the regulations—I have reflected on that question myself—but that number seems a strong reason to push on. As she says, the recent weeks and months have shown us how precious human life is and that we should not waste moments if we can improve lives.

Yesterday, the noble Lord Bethell told the other place that the restoration of all transplant services would include training nurses on the new law as soon as possible after they return. I would be keen to know a bit more about that. It was not something we had heard of before, and we would want a sense of the scale of that and the precise timeline the Government are expecting.

As I said, the Opposition are happy with the regulations as laid, but I seek to make three points. First and foremost, we agree that deemed consent should only apply to routine transplants. This is a matter of ensuring that public policy going forward matches the public’s expectation. I share the Government’s view that this would not reflect rare or novel procedures, including to create advanced therapy medicinal products, taking place without explicit consent. I will reflect on those ATMPs in a couple of seconds.

Secondly, I welcome the Government’s response to the consultation on the statutory instrument. Following the responses received, they have rightly revised the regulations with additional clarifications on tissues from sexual and reproductive organs, which will not be subject to deemed consent. That is particularly welcome. It is nice—I dare say even novel—to see a Government consultation leading to such concrete changes. It is a good thing and long may it continue.

Thirdly, the Government indicated in their response to the consultation that they do not expect the list of accepted tissue to need regular updates, and I agree with that in principle. The Minister mentioned how a process might happen if things were to be revised later, but I would like to understand a bit more about what would have to change for her to start such a process.

On those rare and novel transplants, it is important that public policy matches what people expect from the legislation, but we should be proud that the UK leads the world on such transplants. It is a good sign of the ​health of our country in this regard. They are not currently included under deemed consent, but developing these new technologies and techniques enables us to save more lives. We lead the way in both development and implementation. We have pioneered the OCS—organ care service—heart system, a portable device that can preserve a donor heart in a near-normothermic beating state until it is transplanted, which is currently being used in three heart transplant centres in the NHS and is being introduced in a fourth. We have also shown that abdominal organs can be assessed and their function improved using normothermic regional perfusion technology. As is the aim with this legislation, these developments can save lives, and we should be proud of that, but we should not rest on our laurels, so could the Minister reaffirm the Government’s commitment to continuing the UK as a leader in this regard and to providing the necessary funding to transplant units to ensure they can take advantage?

I turn now to resources, because what we are agreeing today, though very important, will have resource implications for us to pick up. An increase in the number of transplants will necessitate increased support for families who lose loved-ones. It is a difficult and emotional experience for them, and they will require high-skilled care and support, so what extra support will be available for them as these numbers increase?

Similarly, we will need specialist nurses for donation, not just for the direct care but for the implementation, providing advice and support to families and playing the vital role of determining what the deceased’s last known decision was, so that no procedures take place without the appropriate consent. As I say, the Minister in the other place yesterday mentioned specialist training. Could the Minister here today expand further on that?

I welcome the Government’s commitment to ensure that there are enough staff to do this. Will the Minister also commit to providing the additional funding required to ensure that the required increase in specialist nurses continues in line with the increase in transplants, so that they are not having to be begged or borrowed from other parts of the service?

We support these regulations. This is the next staging point in a really important journey. It will make a difference to hundreds and hundreds of lives—lives of people who are completely unaware that these discussions are even taking place today, not knowing that they will need this. This is the right thing to do and the right time to do it, and we support the regulations.