Organ Donation (Deemed Consent) Bill

Julian Knight Excerpts

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

[Julian Knight (Solihull) (Con)]

It is a great pleasure to follow my good and hon. Friend the Member for Torbay (Kevin Foster), who made a typically thoughtful, telling and long contribution.

The question of organ donation, as with so many debates about what the Government can tell us to do with our bodies, can be contentious. There are deeply held beliefs on both sides of the debate. A move towards a system of presumed consent is exceptionally worth while, but the right to opt out must be clearly and consistently protected at every stage. There are three factors to consider: first, is there a clear need for the Government to pursue an increase in donations; secondly, does the available evidence suggest that an opt-out donation policy will lead to such an increase; and, thirdly, is such a policy compatible with the private right of the individual citizen to ultimate ownership of their own body?

On the first question, I believe that the only answer is a resounding yes. Every year, hundreds of people die waiting for a transplant and many thousands more languish on waiting lists that create a bottleneck for life-changing—indeed often life-saving—surgery. Even worse is something that I see my own constituency and have raised with the new Birmingham and Solihull clinical commissioning group: black and minority ethnic patients, who are more likely to suffer diseases that require transplants, such as kidney diseases, face an even more acute shortage due to lower take-up of voluntary donation among their communities. Such insufficiencies and inequalities demand that we address them in whatever way we can.

It was a great pleasure to see my good friend the hon. Member for Birmingham, Perry Barr (Mr Mahmood) in the Chamber and to hear his intervention. I know the circumstances of the individual donation, and the story is even more remarkable than we have heard in the Chamber today. The hon. Gentleman’s vibrancy, which we see day in, day out, is a testament not only to him, but to the medical staff who helped him through the operation.

Of course, there has been a consistent trend of more people opting in under our current regime. Indeed, there are more than 25 million people on the NHS organ donor register, and we thank every single one of them, but it is an unfortunate fact that only a fraction of people die in circumstances that make their organs suitable for transplant—just 1% percent of that 25 million, according to NHS figures. Would a shift to presumed consent address that problem? The available evidence is promising, although not wholly conclusive, but I am willing to go with an act of faith.

Several countries that have moved to an opt-out donation model have seen a rise in donations, including—this is most pertinent to us—Wales, which introduced an opt-out system only recently and has seen increases in both deceased donors and transplants. Countries such as Spain have coupled the approach with other measures, such as heightened public awareness campaigns and an overhaul of the infrastructure underpinning the donation system. That obviously muddies the waters, as does the fact that any uptick in donations often occurs years after the switch to the new system. In some countries, such as Brazil, donation levels have actually fallen slightly after the change to the new system. However, I feel that there is enough positive evidence to suggest that a switch to an opt-in system for England would be very worth while, provided that the rights of individuals to refuse consent are adequately safeguarded.

It is important that the deceased’s family has a role to play. For example, if they are aware of an expressed opposition to donation that was not formally registered with the NHS, I believe that they should have the right to register it. Over the longer term, the right to opt out must be reinforced by robust protections to ensure that doing so remains a simple and easy thing to do, with no questions asked. The hon. Member for Barnsley Central (Dan Jarvis) was very particular about that, which I was grateful to hear.

Individuals who refuse consent should not be subject to any pressure to change their minds or asked at intervals to think again. We must never lose sight of the fact that our bodies are ours, however valuable and useful they might be to others, and that they are not the property of the state in any way.

In summary, I support the Bill. I have considered the evidence, and while it is contradictory in part, we should look at the examples from Wales and Spain. The system should be married up with the correct procedures, encouragement and public information, and an under- standing that it is our body. I believe wholeheartedly that this Bill should be passed and that there should be a fundamental change in this area.

[Neil O'Brien (Harborough) (Con)]

It is a pleasure to support this important Bill. I grew up in Huddersfield, and Barnsley are our great rivals, but despite that it is a pleasure to congratulate the hon. Member for Barnsley Central (Dan Jarvis) on this hugely important Bill. As my hon. Friend the Member for Solihull (Julian Knight) said, it protects important rights. He made the incredibly important point that our bodies are not for the state. They belong to us, and it is essential that we have the right to say no if we have objections, but I believe that the Bill includes safeguards to achieve that.

The hon. Member for Barnsley Central mentioned the case of Max Johnson, just nine years old, whose life was saved by a heart donation from Keira Ball, who had been tragically killed. I wonder whether I might also mention the Leicestershire case of Albert Tansey, whose life was saved by a heart transplant at the amazing Glenfield Hospital when he was just four years old. The hospital is home to the now saved children’s heart unit, which we have all strongly supported in Leicestershire. Thanks to the miraculous work done at Glenfield, he is now enjoying his ninth birthday, and his family are strongly in favour of the Bill. It has already been said that this could be called the “Getting on with your life Bill”, or the “Being a Member of Parliament Bill”, but it is also the “Enjoying your ninth birthday Bill”.

Although this debate could be rather bleak, there is some good news: 50,000 people are alive today thanks to organ transplants, including the hon. Member for Birmingham, Perry Barr (Mr Mahmood), who is looking very well on it, I must say. The number of people registered as donors is rising—we thank them for that—and the numbers on the transplant waiting list have fallen steadily over the past eight years. However, the Bill is still necessary because some people are missing out. Between 2005 and 2010, some 49,000 people had to wait for an organ transplant, and 6,000 died while waiting, of whom 270 were children. We could save more lives if we had more donations. I am particularly conscious that for some groups, particularly ethnic minorities, it can be particularly difficult to find a transplant. I have seen the good work done by the NHS and visited a temple just north of my constituency to see the outreach work it is doing to try to find more donations, but none the less there is still a big problem.

In 2008, only one of the top eight countries with the greatest number of organ donors per capita had an opt-in system. All the others had opt-out systems, so there is strong evidence that such systems can increase the number of donations. In 2017, we know that 1,100 families refused to allow an organ donation because they were not sure whether their relatives would have wanted to donate. My hon. Friend the Member for Torbay (Kevin Foster) made the important point that asking people to make a proactive decision to donate at an incredibly emotional and difficult moment is harsh and unfair. I think that many families would later come to value the fact that a loved one’s organs had gone on to help someone else to live.

[Julian Knight]

Does my hon. Friend agree that sometimes in that situation, relatives could make a decision that they later regret, because in the emotion of the moment, they might not make the decision to say, “Let’s go ahead and make the donation.”?

[Neil O'Brien]

I absolutely agree.

Let us also think about the medical staff who need to have these incredibly difficult conversations. A long time ago, I was a medical student. I remember the first time I ever saw someone who had died and the medical staff’s incredibly difficult conversations with his family in the hospital. Imagine then having to ask the family to make the donation of an organ to save another life. It is almost an unbelievable thing to have to ask people to do.

We know that, since the introduction of the opt-out system in Wales, the number of deceased donors is up from 60 to 74. Those are small numbers, but none the less that is a rise of 23%. It is early days, but the opt-out system does seem to help. Obviously, we need the safeguards that my hon. Friend the Member for Solihull described, but at the end of the day, the Bill will save lives—it is as simple as that.

It is ironic that often on a Friday, when there are relatively few of us here, we talk about matters of life and death. This is one of them. This Bill will save lives. It means more careers, more lives and more ninth birthdays. If I can have a moment of poetry, it is what one poet called the

“million-petalled flower of being here”.

This Bill will save people’s lives, and it is a pleasure to support it.