Organ Donation (Deemed Consent) Bill

Jackie Doyle-Price Excerpts

2nd reading: House of Commons
Friday 23rd February 2018 Commons Chamber

[Mr Virendra Sharma (Ealing, Southall) (Lab)]

Thank you, Madam Deputy Speaker, for giving me the opportunity to speak in this very important debate. I congratulate my hon. Friend the Member for Coventry North West (Mr Robinson) on bringing this Bill forward in the Chamber and on raising our awareness of the issue. I also thank and congratulate my colleague, my hon. Friend the Member for Sunderland Central (Julie Elliott), on her very emotional, personal and courageous contribution to the debate. I am quite confident that the public and Members will have taken note of it.

Others have spoken at length about the importance of raising donation rates. I have my own personal reasons for supporting the move: my younger brother has been waiting for more than five years for somebody, somewhere, to donate a kidney. He has dialysis four times a week. Another very close personal friend is also going through the same difficult times. Therefore, I have those reasons for supporting the Bill, as well as my own personal views, and a moral commitment to the cause.

As many colleagues have said, more than 6,000 people are still actively waiting for a transplant in the UK. Three people die every day because they cannot get the transplant that they need, ruining family lives across the country. Over the past 10 years, the number of donors has increased by 75%, which is fantastic and has saved countless lives, but there is still a great shortage both in the UK and—as we are a global community—internationally as well. If we go to any country, we are asked, “What are you doing in this field?” I am glad that, once again, Britain is leading in this field, so that the rest of the world can learn and pick up its ideas from here.

Only a third of eventual donors are registered to donate at the time of their death, and this number is even lower among the black, Asian and minority ethnic communities. BAME patients fare far worse than other patients. They will, on average, wait six months longer for a transplant than a white patient. I do apologise if my language is not politically correct, but for convenience, I will use black and white in this case. BAME people face the struggle of comparatively rare blood and tissue types and compatible organs. Although the overall number of donors has increased by 75%, BAME donations have only increased by less than 7%—a fraction of the rate for white people—and that has translated directly into deaths.

There is still a problem with public education and awareness. The families of minority populations are also less likely to consent to organ donation when asked after death: 64% of BAME families refuse permission for donation compared with only 43% for the rest of the population. An opt-out system rather than an opt-in system will increase the likelihood that donors of the same blood and tissue types are available to members of the BAME community. Increasing the number of compatible organs on the transplant list could save thousands of lives each year.

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

I thank the hon. Gentleman for giving way. He is making some extremely important points in his speech, and they are ones that I am particularly conscious of and really want to tackle. Let me amplify some of his points: of the 6,400 people on the waiting list, more than a 1,000 are from Asian backgrounds and 800 are black. I just wish to endorse his point that, in terms of racial fairness, we really need to increase donation from those parts of the community.

[Mr Sharma]

I am glad and thankful for the Minister’s very positive intervention and for the information that she has provided to Members in the Chamber. Activist groups and campaigners, such as the National BAME Transplant Alliance, support the move to an opt-out system, because it will ultimately save more lives across our diverse country.

--- Later in debate ---

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

I thank the hon. Member for Coventry North West (Mr Robinson) for bringing this Bill to the House; he has secured his fortunate position in the ballot and used it constructively. I am therefore grateful to him and confirm that the Government will give his Bill our wholehearted support. It has been an absolute pleasure to work with him and the hon. Member for Barnsley Central (Dan Jarvis) and to get to the place we are in now, having a Bill we can all support. The reason why we are here, in a relatively painless way given our discussions, is that we were all focused on the shared objective of saving lives and securing the availability of more organs for donation. I am extremely grateful to him, and I wish the Bill Godspeed and hope that it gets on to the statute book as soon as possible.

We have heard some moving stories today, and I want to make particular reference to my hon. Friend the Member for North Devon (Peter Heaton-Jones), who talked about the bravery of Keira Ball, who has saved four lives. I shall say a little more about that later. I also want to thank the hon. Member for Sunderland Central (Julie Elliott), who spoke movingly about her daughter. The real thing about this subject is that once we hear the human stories about people who have given organs, consented to their relatives doing so when they have been bereaved, witnessed family members needing an organ or indeed been a live donor, we cannot fail to be touched by their experiences. It is certainly with considerable commitment that I will do my bit to ensure that more organs become available for donation.

[Mark Tami]

I have spoken briefly about my own experience with my son, who was able to get a stem cell donor. We were in hospital for quite some time, and I saw many parents who did not find a donor. That was very difficult, and, to be frank, I felt a degree of guilt because we were fortunate and I knew that I was looking at someone whose child was going to die. That is a heartbreaking situation, and we need to do whatever we can to ensure that more people get on to the register and donate organs.

[Jackie Doyle-Price]

The hon. Gentleman puts that as well as it could possibly be expressed. That is entirely the motivation behind the Bill. We are losing too many people each year because they need organs, and it would be a poor Health Minister who did not do their best to remedy that. He is absolutely right to describe the very real impact when we see people in that situation. I have been on my own journey with my constituent, who has already been mentioned by the hon. Member for Kingston upon Hull West and Hessle (Emma Hardy). My constituent painfully lost her daughter, who was waiting for a transplant, and she has used that experience to campaign for this important cause. She has also taken the step of becoming an altruistic donor herself. Who could fail to be inspired by such a story? I am pleased to be able to deliver on the promise that I made to Patricia, when she came to see me for the first time, that I would do everything I could to secure more organ donations. And here we are today, delivering that.

Last October, the Prime Minister pledged her personal support to change the law on organ donation and, in doing so, to help more people across the country to achieve an organ transplant. We should also remember the contribution of Max Johnson, whose struggle was embraced by the nation and who has done so much to highlight this important cause. As a consequence, we in the Government will be referring to this legislation as Max’s law, and we will do everything we can to ensure its passage. In that regard, I am grateful for the Opposition’s support, which will ensure that it has a speedy passage. With such cross-party commitment, we should not fail. As Max, his family and families all over the country who have experienced life on the transplant waiting list know, organ donation is a precious gift, and the family of Keira Ball deserve our special tribute. The fact that she has saved four lives is incredibly inspirational.

I want to echo the tributes that have been paid to the Daily Mirror. We do not often talk about national newspapers in a complimentary way in this House, but the Daily Mirror has done a fantastic job of highlighting this cause. This illustrates what the press can achieve when it puts its mind to something positive. I echo the tribute paid to “Coronation Street” by the hon. Member for Washington and Sunderland West (Mrs Hodgson). Like her, I am pretty addicted to the soaps, and we should not leave out “EastEnders”, which highlighted live liver transplantation last year. She was right to say that the soap operas have also been good at highlighting mental health, but it is particularly apposite that we have seen the organ donation story this week. I commend “Coronation Street” for tweeting a link to the Government consultation in the immediate wake of that programme, which I think is a first. It would be helpful if soap operas highlighted future Government consultations, but I do not think it will be common.

I will be fairly brief in addressing some of the points that have been raised. A number of Members expressed concern about moving from an opt-in system to an opt-out system, and I reassure them that the concept of organ donation being a gift voluntarily given by the donor remains central to the Bill’s principles. There can be no question of the state taking control of organs, which is why the ability to opt out is central to the Bill. Opting out will have to be made extremely easy, and people will have to be able to continually revisit their decision if they wish to change their mind.

It is also central to the Bill that family consent is respected. The circumstance in which someone is able to donate their organs is clearly traumatic and difficult. In considering the whole period at the end of life and the struggle that surgeons are undertaking to save lives, it is important that we are sensitive about that time. We need to be sure that, once someone has lost the capacity to give consent, their family, as next of kin, have their rights protected. I have no doubt that we will explore some of those issues in Committee.

I put on record the representations I have had from the medical establishment, which would feel uncomfortable if consent were not sought from the family. In developing a regime that secures more organs but is also sensitive to everybody’s views, we are able to strike the right balance in the Bill.

[Tom Pursglove (Corby) (Con)]

I entirely support the Bill. Has the Department given any early thought to public engagement, so that people are aware of any changes coming into force and of what those changes mean?

[Jackie Doyle-Price]

My hon. Friend will be aware that we are consulting on the principles enshrined in this Bill. That consultation will end on 6 March, and we will reflect on those representations. As we have already heard, we are seeing an unprecedented response to the consultation, and there is a substantial degree of support. The consultation will inform our communications.

We have also heard a lot about the high incidence of people from Asian and black backgrounds on the waiting list, and again that is a priority for the Government. The hon. Member for Ealing, Southall (Mr Sharma) said MPs should show leadership. We are leaders, and it is certainly something that I want to do. I have a large black African community in my constituency that I am engaging with on this issue. With that in mind, I have tasked NHS Blood and Transplant to develop MP toolkits that we can all use to go out into the community to sell the concept of organ donation. As and when those toolkits are available, I hope to have support from many Members in rolling out that communication.

[Mr Pat McFadden (Wolverhampton South East) (Lab)]

Will the Minister give way?

--- Later in debate ---

[Jackie Doyle-Price]

I would like to make progress, so I will take no more interventions.

As I have made clear, we support the Bill and are determined to secure more organs for transplant, because we are concerned that we are losing lives unnecessarily. People have referred to the experience in Wales and whether the learning from that will achieve a material difference. At this stage, it is too early to draw any conclusions about the number of organs that the change in Wales has secured, but we have seen an increase in consent and opting on to the register. Our best estimates are that the change will secure an additional 100 donors a year, which could lead to the saving of 200 extra lives.

[Layla Moran (Oxford West and Abingdon) (LD)]

Will the Minister give way?

[Jackie Doyle-Price]

I will take no more interventions.

On the basis that we could save 200 lives, we wholeheartedly support the Bill. I look forward to working with all Members to secure Royal Assent.