Organ Donation (Deemed Consent) Bill

Debate between Jackie Doyle-Price and Andrew Bowie

3rd reading: House of Commons & Report stage: House of Commons
Friday 26th October 2018 Commons Chamber

[The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)]

It really is a pleasure to confirm the Government’s support for this important measure from the Dispatch Box today. I join other Members in sending my good wishes to the hon. Member for Coventry North West (Mr Robinson), who has been the driving force behind the Bill, and I am grateful to him for choosing this as the subject of his private Member’s Bill, because it will save lives. I also want to thank the hon. Member for Barnsley Central (Dan Jarvis), who actually began this journey for me with his Westminster Hall debate on the subject, which took place before we launched the campaign to take this Bill ahead. This has been quite a journey for us, and it has been a pleasure to work with him and the hon. Member for Coventry North West. They have made it very easy for me to work with them; we were all very focused on the outcome that we were trying to achieve, which was to save more lives, and we have approached the matter practically and pragmatically. I wish the Bill Godspeed to the other place, from where I hope it will emerge unscathed to take its place on the statute book very soon. I shall certainly be saying my prayers to ensure that it does so.

Lots of colleagues mentioned the debt that we owe to Trinity Mirror for a campaign that captured the public’s imagination, and we are grateful to Max and his family for their role in it. However, we cannot thank the family of Keira Ball enough, and my hon. Friend the Member for North Devon (Peter Heaton-Jones) has been fantastic at telling their story. One of the joys of doing this job—I always feel inadequate and utterly humbled—is meeting donor families. It is great to have the hon. Member for Birmingham, Perry Barr (Mr Mahmood) here, because we should not forget live donors and their altruism. It is incredible that people will make such donations voluntarily and, it must be said, at great personal risk. Giving the gift of life is something that donors and their families should be proud of, and I never fail to be inspired by those stories. We think today not only of those who benefit from organ transplants and those on the waiting list—we hope to be able to save more of them—but of donors and their families, without whom we would not be having this debate. I thank them all.

The real objective of this Bill is to ensure that we improve the chances of the thousands of people who are desperately waiting for a transplant. Again, I totally associate myself with the comments of the hon. Member for Barnsley Central when he introduced the Bill, because it will not achieve the degree of change that we want on its own, but one of the happy advantages of this Bill and of the Daily Mirror’s campaign is that we have raised awareness of organ donation. Such things were rare 40 years ago, but donation has almost become so commonplace that people may think, “That is somebody else’s problem. I don’t need to worry about registering my preference. Somebody else will do it. There isn’t the need.” Well, there is a huge need. We also need to remind people that dialysis is a life-saving process, but it is not nice. We have become desensitised to just how challenging such illnesses are.

The Bill provides us with a fantastic opportunity to raise awareness of the whole organ donation issue, which I have been pushing NHSBT to take full advantage of, and I am pleased to say that it has. We will obviously have to build on that progress as the Bill moves forward. My hon. Friend the Member for North Devon pressed me on that, and if the hon. Member for Coventry North West was here, he would have done the same. I can tell the House that we will be investing £18 million over the next three years to raise awareness of the new scheme and to encourage people to register their wishes and have conversations with their families, which is by far the most important thing. There will be £18 million over the first three years, but ongoing communication to raise awareness will very much be part of how we take things forward.

If Members and anyone watching today have not had that conversation with loved ones about their wishes in the event of their death, please have it. The last thing we want is for loved ones, in the unhappy event of a loss of a life, to be put into a position where they have to make a judgment not knowing the true wishes. We have heard how people have approached that and doing so is immensely brave. I sometimes hear from donor families that the decision was easy because they had had that conversation, and I cannot repeat that message often enough.

I associate myself with the comments of the hon. Member for Barnsley Central when he said that the Bill is not about the state taking control of people’s organs. Organ donation is a gift, and that is a fundamental principle of the Bill. We are altering the basis on which people’s wishes can be expressed, which will have the effect of altering the conversation at the bedside when it most needs to take place. However, we will continue to invest in the specialist nurses who are trained to have those conversations in the most sensitive way. It is important that they are specialists, because the surgeons and medical staff who are emotionally invested in trying hard to save a life should not be the ones who then must have that conversation with the family—that clearly would not work.

I totally endorse the argument that, in addition to the new system, the accompanying measures relating to all support staff and communication will contribute to an increase in the number of organs available for transplant. It is only by taking those measures together, rather than in isolation, that the scheme will be successful.

In the time remaining, I want to address some issues that have arisen. There is a lot of nervousness. People are inhibited from signing up to organ donation mostly by a sense of mistrust—of institutions of the state and of medical professionals—and because they do not really know what happens. I want to put some points on the record to calm the situation and provide reassurance.

We have talked extensively about the need for more donors from black and Asian communities because they are more likely to suffer from conditions that require a transplant. Obviously, the most successful transplants are those with a strong genetic match, so we need more of those donors.

We know that the issue is taboo in some communities. Some people believe that there are reasons of faith for not supporting transplantation. We have been working with various faith leaders to develop messages and materials to reassure people that the practice is consistent with their beliefs. I am grateful to my hon. Friend the Member for Torbay (Kevin Foster) for mentioning that the Board of Deputies of British Jews supports the Bill. We have had similar conversations with representatives of the Hindu faith, the Sikh faith and the Muslim faith, as well as with Christian Churches.

That dialogue needs to continue. It is clear that people will respond to messages from people whom they trust and respect, so it is very important that we continue to engage with faith communities. It cannot all be done at once; we need to keep chipping away and sending messages. I hope Members will use the toolkits I have circulated today. They are designed to equip Members of Parliament, who are trusted in their communities and are good advocates for the proposal, with the material to engage directly with communities.

Much reference has been made to the role of families at the bedside. There is concern that families often overrule the wishes of people who want to donate, but we need to protect the family’s ability to have that final consent. It is very easy for us to imagine situations in which we would want our wishes to be respected, but we do not know the circumstances when it comes to matters of life and death. It is very important that families have that final consent, and I emphasise that that will remain the case. I cannot emphasise enough that if people have that conversation with loved ones, their wishes are less likely to be overruled.

I remind the House that guidance on the current system of consent is detailed in a series of codes owned by the Human Tissue Authority. We will update those codes and people will have the opportunity to make representations. The idea is to have a complete, up-to-date document providing information on the approach taken in England. The guidance will cover how consent can be expressed; how people can register their wish to opt out; the role of the organ donor; and how specialist nurses will interact with families. It will also give people the opportunity to record that their faith is important, if they wish that to be an issue of consideration.

It is also worth noting that as we develop technological solutions to addressing things in the NHS, people will be able to amend their views on donation regularly by direct interface with an app. They will be able to change their mind. One day they might decide that they are happy to give their corneas and then on another decide that they are not. People will be able to make that selection and make anything that they would wish to be considered clear.

On timing, we hope that the Bill will receive Royal Assent by March, in which case the HTA is all set to go to produce a first draft of the code by May. That will be followed by a 12-week consultation on the draft guidance with stakeholders, including faith groups, so there will be another opportunity for us to address any concerns properly at that time. We expect to lay that guidance before Parliament next September. I can therefore assure the House that we intend to make use of this Bill speedily once it has received Royal Assent.

I wish to make a point about children. Obviously, children below the age of 18 will be exempt from the Bill, as they are not at the age of majority in order to make their choices known. As before, the family will be fully consulted. The safeguard will be as it is now, and children are always dealt with extremely sensitively.

I have mentioned that we will continue to engage with faith groups. I wish to emphasise that NHSBT is updating and extending its faith training, so that as we can expect more conversations to be taking place on the part of specialist nurses following this change, people will be kept fully up to date with any religious and cultural issues that might need to be considered.

Finally, I wish to say something about an issue that Members may have been lobbied about: novel transplants. We have all talked a lot today about kidney, liver, heart and lung transplants, and these are the organs we are all used to talking about. Clearly, medical advances being what they are, other things will materialise; I have heard evidence of hand, face and uterine transplants. They will not be covered by the Bill. They will be exempted by our introducing regulations that exempt certain organs from the deemed consent procedure. We have done it that way because this Bill needs to be able to have a life and to respond to medical advances, so it is better to have regulations that enable us to exclude rather than to have a list of organs that are covered. In that way, it is easier to keep this law in date.

[Andrew Bowie (West Aberdeenshire and Kincardine) (Con)]

Does my hon. Friend know whether the proposals she has set out on protecting parts of the body such as hands and the other things she mentioned will be marrying up with legislation going through the devolved legislatures now? Will we therefore have a similar code of practice across the entire UK?

[Jackie Doyle-Price]

Just as this Bill has progressed with good will from those in all parts of this House, so it has progressed with good will from all nations. We have all been sharing our experience to make sure that we get this right. So I am sure that that will be taking place in a consistent way.

In conclusion, as I said at the beginning, I am so proud that I have been able to play my part in taking this Bill forward. I am so grateful for the good will from both sides of the House in taking this forward. It has been a fantastic piece of cross-party working. It has made the process quick and speedy, and we have all been focused on what we are trying to achieve, which is to save more lives. I am very confident that Max’s and Keira’s law will have a very positive impact on how we treat people with organ failure and that it will also kick-start a cultural change in how we address these issues. In fact, it already has: people are talking about organ donation much more and joining the organ donor register at increased rates. I hope that the House will give the Bill its wholehearted endorsement.