Organ Donation (Deemed Consent) Bill

Khalid Mahmood Excerpts

Committee Debate: 1st sitting: House of Commons
Wednesday 12th September 2018 Public Bill Committees

I am grateful for the contribution by the right hon. Member for Don Valley. As she said, this is not about taking anyone’s choice. We have heard a lot of ways in which the Bill has been clearly misrepresented, as if the state is taking control of organs. Nothing could be further from the truth. There is no question of the state taking control of organs. Organ donation is a gift. All we are doing is altering the basis on which people make clear their wishes. Rather than opting in, joining the register and carrying a kidney donor card, it will be assumed that people have opted in unless they physically opt out. We are doing that because we know that 80% of adults say they are willing to donate, but not all of them sign up to the register—it is literally procedural.

[Mr Khalid Mahmood (Birmingham, Perry Barr) (Lab)]

I thank the Minister for making that point. Under the current system, when people have a donation card, it is still the responsibility of the next of kin to make the decision to donate. In most instances, that decision is not made. Therefore, the value of that card is not upheld.

[Jackie Doyle-Price]

The hon. Gentleman makes a good point. One of the difficulties in making legislation such as this, where things are put very clearly on the statute book, is that we must have regard to what really happens at the bedside. It is one thing for something to be written in law, but how do relatives losing a loved one in the most atrocious circumstances deal with this? It comes back to a cultural change. The most important thing any of us can do if we want to increase organ donation is ensure that we all have those conversations with our families, so that they understand our wishes. Let us put ourselves in the position of being at the bedside of a loved one who is losing their life. We can put all the support in place—specialist nurses to talk them through the process and so on—but unless families really understand their loved one’s wishes and have had that conversation, naturally the next of kin will be reticent to give consent. One of the great virtues of the Bill and the surrounding campaigns is that we have encouraged people to have those conversations. It has been a real driver of cultural change in that sense.

The hon. Member for Strangford also shared his experience, for which I am grateful, and reiterated that no one would be compelled. Finally, my right hon. Friend the Member for Chesham and Amersham was, as always, wise in her observation that, when the facts change, people should change their minds. It is not a weakness if politicians do so from time to time. I am grateful to all Committee members for their support.

The amendments constitute a tidying-up exercise that essentially make it clear that we are talking about organ transplantation. Their effect would be to remove novel transplants—such as hand and uterine transplants—from the scope of the Bill. The medical advances that allow such transplants are amazing, but in order that the law keeps pace with those developments, we need to make those exemptions and state that we really are only talking about organs. Amendment 7 amends the long title of the Bill to better describe what the Bill will do.

Most points around the Bill have already been made, but I will touch on some of the procedural issues that will flow from it. We expect a rise in the number of organ transplants as a consequence of this legislation, because more organs will be available. We could estimate that, and it could be anything from one to 700, but even one extra life is enough for me. However, I am confident that it will be much more than that. We will also have to put in place the register and the mechanics around it and publicise the changes. Following the Bill’s passage to becoming an Act—touch wood—we are looking at an implementation period of a year before everything is completely nailed down, enshrined and operational.

There has been lots of talk about the role of families. Ultimately, families will clearly wish to have a role in the welfare of a person who lacks the capacity to make a decision after deciding to be a donor. We need a system that takes families with us on this. We are sensitive to people’s faiths and beliefs, and that will all be considered as part of the wraparound care that we will put in place. We will obviously undertake further discussions with the Welsh Government to see how far we can learn from their experiences. By the time the Bill’s passage is complete, we will essentially have the same legal structure across Wales, England and Scotland.

I have talked about novel transplants, and clearly we will have the power to alter the regulations if other kinds of transplantation become possible over time. This legal framework should therefore be future-proof and able to react to changes in medical practice.

The hon. Gentleman ably spoke to the amendments. I do not have much more to say, other than that this is an extremely valuable piece of legislation. As a Health Minister, I have been given a wonderful tool to help us to save lives. It has been an absolute pleasure to work with all Committee members and to achieve this change one way or another. I look forward to seeing the Bill on the statute book. Everybody here, who has fought so much for these measures, can be extremely proud.

Organ Donation (Deemed Consent) Bill

Khalid Mahmood Excerpts

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

[Kevin Foster (Torbay) (Con)]

It is always a pleasure to be called to speak in a debate with you in the Chair, Mr Deputy Speaker, and it has been a particular delight to listen to the hon. Member for Barnsley Central (Dan Jarvis), who is moving the Bill’s Third Reading on behalf of the hon. Member for Coventry North West (Mr Robinson), with whom I share two things. Clearly, we do not share a political party, but we support both Coventry City football club and his excellent Bill, which he has diligently pursued through the House. It is a compliment to his skills that he has managed to secure such wide-ranging support across the House, and in a very sensitive area. I know that for Government Members this would be a free vote issue and I believe the same would apply to Opposition Members, given the issues it touches on. The fact that he has skilfully managed to assemble such a broad ranging coalition of support is a tribute to him, as is the work that has been done to assuage the genuine concerns some people have about this.

I am quite a religious person, and Members will know from some of my previous speeches the role I play in my local church. This Bill does not raise any issues for me, but I respect the fact that it does for some groups out there. I suspect that many Members will not have seen the reassuring email that has come into my inbox while we have been in the House today from the Board of Deputies of British Jews, forwarding a letter from the Minister setting out a number of reassurances and making it clear that the Board of Deputies is reassured by what has been said and does not see a reason for any objections on the grounds of its faith.

We are calling this Bill the Organ Donation (Deemed Consent) Bill, but we could just as easily call it the “Birthday someone is going to be around for Bill”, the “Job that will be kept Bill”, the “School that will be started Bill”, the “Grandchildren who will be seen Bill” or “The father or mother who will get to see their son or daughter graduate Bill”, because that is ultimately what this is about. In this debate, it is natural that we can sound as though we are just talking about anatomy, and I will probably sound as though I am doing that in a minute. It can sound as though we are talking about bits in our bodies being transplanted into someone else, and we can go through the list of things. The reality is that the benefit of transplants and making more organs available is that this gives people back their life or saves their life. We are talking about the person who no longer has to go for dialysis and is able to do other things with their life. We can keep such people alive but once they have been able to have their transplant, they are able to move on. So this Bill is very welcome.

I am clear that this Bill would not force anyone to have their organs transplanted against their stated will—that will not happen. Even if someone did not know about these provisions, protections have been well crafted by the hon. Member for Coventry North West, working together with the Government, that provide reassurance to anyone and any family who might have a concern that that would take place. It was a delight to serve in Committee where this was explored in some detail. It was made clear that people could provide evidence on what the person’s views would have been; clear evidence could be provided showing that they were part of a particular religious group or movement that has an objection, or showing that they had raised their objection. For me, this is therefore very clear.

It is also clear that this Bill is not about taking organs from those who would lack the capacity to make that choice for themselves; clear protections are in place that would be available in respect of those who would not genuinely understand the provisions and what this Bill would mean. So for me, the Bill is welcome.

Just before I was elected, there was a well-known campaign in Torbay called the Green Star Man campaign. A chap dressed up like a superhero and went around hanging stars around the bay, and he tried to get people talking about what it was all about. He did not tell anyone until the great reveal. He had hung them off a palm tree and the town hall, and I think my predecessor, Mr Sanders, brought one up to Parliament and sat out on the Terrace with it to make it look like it had been hung here. I give him credit for supporting that campaign. It was all there for the big reveal, which was that the stars were the people who became organ donors. This chap was motivated by the experience of his daughter, who had needed a transplant, and by the fact that someone could give the gift of life when they could no longer give any other gift or make any other gesture like it. It is such a special and unique gift.

One key thing that drives my support for the Bill is that currently the conversation about organ donation comes up at what will be the darkest time in a lot of people’s lives. It will normally be in the case of a surprise or sudden death. Let us be candid: that is particularly true for those most likely to be candidates for organ donation—people in their 20s, 30s and 40s—who may have had no comprehension that something was going to happen to them. This sort of discussion will bring up some difficult memories, even for some Members present. To be sat down at that moment to have a conversation about organ donation is one of the most difficult things for anyone to do. The doctors need to do it at that time, but the Bill will rightly change the perception, and it will be done only if there is an objection. That will make the conversation at that moment easier.

I was lucky. I can remember when I was 13 and my grandfather had just died. My grandparents were getting older and my father sat me down—I did not think anything of the conversation at the time—and told me his views on organ donation and that if ever I was asked, I should say yes. My mother did the same shortly afterwards. Years later, they revealed why they had done that: their parents were getting older—my mother had lost both her parents by that point and my father’s parents were just about to turn 80—and they realised who it was who was likely to have to have that conversation if something happened to them. It would no longer be their parents, and it would probably be me. They felt that if I, as a 16, 17 or 18-year-old, was suddenly presented with that choice, it would be immeasurably harder for me to make it if I did not know what they thought. Knowing what they thought would make it much, much easier. They also shared one or two other thoughts about medical treatment in extreme situations.

I benefited from that conversation, but not many people find it an easy conversation to have, particularly if we think of someone talking to potentially teenage children about the fact that they may be presented with a situation in which their parents are in a desperate state medically and, if the parents’ views are not fully known, it might come to them, at 18, to make the choice about what happens. The Bill will make that process much easier and much simpler. That is very welcome and will have a genuine benefit in expanding the number of organs available for donation.

The provisions of the Bill cover off any technical concerns that any Member may have. Indeed, this is already the law in Wales. It has not caused particular problems in Wales and we do not see many people there raising huge objections to it. We have not seen huge demonstrations since it came into law there. I have absolutely no reason to believe that the implementation of these provisions in Torbay will be any more difficult than the implementation of the change was in Torfaen. The practical effect on the ground is there to see. Members who represent Welsh constituencies have certainly not come into the Chamber to argue that the change has been a problem. In fact, it is quite the opposite: they have come into the Chamber and made it clear that they welcome the fact that England and Northern Ireland will now go down the same path.

For me, this is a welcome and timely Bill. It is also one of the few occasions when, as a Conservative MP, I will stand up in the House of Commons and praise the Daily Mirror. It is not usually my favourite newspaper—I have been in it a couple of times and it has not normally been positive—but it deserves credit for this campaign because many ordinary working people across the country, the very people the Mirror likes to give a voice to, will benefit.

[Mr Khalid Mahmood (Birmingham, Perry Barr) (Lab)]

The hon. Gentleman is making an impassioned, fantastic speech. I do not know if he is aware that I have had a transplant. It came from a friend, a live donor, rather than from a deceased person. A transplant is hugely important to people who are on dialysis due to kidney failure, like I was, because of the pain they go through, what their families go through and the huge amount of care it takes, quite apart from the cost that is incurred by the national health service. That is why this measure is important and why it is working in Wales. I thank the hon. Gentleman for his contribution. Does he recognise that the old system required the consent of the next of kin, which is the difference that we are talking about today?

[Kevin Foster]

I genuinely thank the hon. Gentleman for that intervention. For many people, it will be inspiring to see a Member of Parliament who has benefited from a transplant playing a full part in our parliamentary proceedings, passionately representing his constituents and passionately serving his community in Birmingham. That is what this is about. I could have added to the start of my speech that this is the “Carrying on as an MP Bill”. Such examples are so important.

The hon. Gentleman is right that the issue is the consent of the next of kin. Although I can understand why that was the original process, I have always taken the view that if someone has expressed unconditionally that they wish to be an organ donor, that should be final. I have expressed that wish and it will now be on the record in Hansard. I hope nothing does happen, but I have said that even if my wife was presented with the choice, my view would be the final view.

The hon. Gentleman is right that people are not asked for their consent at a nice time when they can go home, have a think about it and then come back and have a cup of tea when everything is going great. It probably happens after they have received a phone call to tell them that their loved one is very unwell. They then get to the hospital and are sat down, and clearly the conversation is a very difficult one. It is then that the next of kin is asked to make the choice. For some people, it provides a bit of comfort at that moment that at least something good has come of the situation. Many people take at least some satisfaction in the fact that, despite what has happened to their loved one, they can still do something positive. However, for most people, it is not the easiest time to make that decision. The Bill will turn that around and make it easier.

Hopefully in future debates on this issue, more Members will be able to do what the hon. Member for Birmingham, Perry Barr (Mr Mahmood) has done and demonstrate exactly how transplants change lives, whether from living donors as in the case of his kidney transplant or from someone who has made the most special gift that they can make once they can give no more. It literally means people carrying on with their jobs, carrying on with their lives and still being there for their loved ones and their families, just as the hon. Gentleman is doing today in this House. Again, I thank him very much for his intervention.

A member of my office has recently had a transplant. I will not go into the details, because I am conscious that they are a member of staff. They are now in the process of coming back to work. We have certainly seen a great difference in them. They are looking a lot better, a lot fresher and a lot keener. Their view is that they have got their life back. Our thanks go to the family who made that difficult choice. There were occasions when the staff member concerned had to go up, only to find that an organ was not suitable. Finally, I think on the third occasion, the organ was suitable for transplant.

I have seen lives turned around and changed, and we will see more of that because of the Bill. It is genuinely a Bill that will save some of our constituents’ lives. Over the next few years, I doubt there will be a single constituency in the country that does not see at least one person have their life turned around by the provisions of this Bill.

The hon. Member for Coventry North West has been in the House for an incredibly long time, during which he has been in the Government and held numerous positions. Whenever he finally decides to retire, I suspect that he will rightly take the most pride in this Bill. I can genuinely say that it will be viewed as one of his legacies, and I am sure that the hon. Member for Barnsley Central (Dan Jarvis) is pleased that he has been able to play a role in bringing it to the House today.

I am conscious that I have now been going on for about 15 minutes, and I do not plan on trying to break one of my Friday records—not least given how much I support the Bill. I am pleased to have seen the general support in the House and to have had the chance to say a few words in support of the Bill. I very much look forward seeing it pass its Third Reading in the very near future.

--- Later in debate ---

[Peter Heaton-Jones]

My hon. Friend makes a perfect point. That is indeed the case, and another reason why the Bill is incredibly important.

[Mr Khalid Mahmood]

I commend the bravery of Keira’s father in making that decision at the very difficult point of the end of her life. Importantly, the Bill will allow families to discuss this issue before things get to that stage and, as has been said, a difficult decision made at a difficult time could become somewhat easier to confront, and other lives could be saved.

[Peter Heaton-Jones]

That is correct. As someone said earlier, we do not like talking about this stuff, although we should be talking about it more. If the Bill provides us with such an opportunity, that is another reason why it needs to be welcomed.

Although three people a day die from a lack of suitable organs, the situation is worse among people from the BAME community who are more likely to suffer from illnesses that require an organ transplant. The National BAME Transplant Alliance has highlighted that issue, and said in its submission that consent to organ donation must be increased among ethnic minority communities, because transplants are more likely to be successful when the donated organ is a closer match to the recipient. Sadly, however, within that community there is a lack of organs available for donation. That has to do with many issues, including a lack of willingness —perhaps for cultural reasons—to discuss the issue within the family, or perhaps a lack of access to knowledge about the way that the organ donation system works. There are a number of issues, but it is simply iniquitous that the BAME community should suffer more, for whatever reason, and that is why the Bill is so welcome and necessary.

[Mr Khalid Mahmood]

That is a key part of this Bill because it will allow BAME communities to discuss this issue. I know that there are barriers in terms of some religious thought on this matter, and we are working with the kidney transplantation unit at the Queen Elizabeth Hospital in Birmingham to try to make people aware of this issue during Ramadan and other periods. More such campaigns would enable us to get the message across to people that organ donation saves lives, and in terms of religious matters, we have a letter from the Board of Deputies to recognise that. We need more support from within the Muslim community to say that this is permissible.

[Peter Heaton-Jones]

That is an extremely interesting point, and just the hon. Gentleman raising the issue in such a way will help to raise awareness. We are doing part of the job merely by discussing it in this way.

I have fully supported the Bill through all its stages, and it is significant that it sailed through Committee in record time—I think we were there for about 35 minutes. There were no amendments, which is a legacy of how well it was drafted in the first place and a tribute to the fact that the Bill enjoys cross-party support. However, one issue raised in Committee is worth mentioning again, although I am sure the Minister will address it in her remarks. To understand it, we need to look to Spain, where a similar Bill to the one under discussion has been in force for some little while. In Spain, it appears that the legislation has significantly increased the number of organs available for donation and saved lives, but—and this is an important but—the Bill introduced not only a change to the legislation, but additional Government investment to ensure that people could access an education and information campaign and understand that the law had been changed. The campaign encouraged people to hold conversations with their families and to ensure that there was no misunderstanding, and that the Government or the state were not saying “We’re taking your kidneys and liver from you whether you like it or not.” It was extraordinarily important that the public information campaign went hand-in-hand with the change in legislation.

In Committee, the Minister said that the Government would commit £30 million over three years for a public information campaign, with an additional £2 million for one-off spending at the start when there will be a spike in interest and administration. That is most welcome. However, in fully supporting the Bill, I gently make the point that I look forward to hearing confirmation from the Government that they will support the Bill with the necessary financial backing.

It is very important not only that everyone has their say but that we pass the Bill in the time available, so I will conclude my remarks. I fully support and welcome the Bill. Many people deserve credit for getting it to this stage, not least the hon. Member for Coventry North West, the hon. Member for Barnsley Central and many others. The Government have supported the Bill. The Minister has been tireless in personally driving it forward and I thank her for that. I also thank the other parties in this House—the Bill has received cross-party support. It is refreshing in these times, when we seem on a daily basis to talk about conflict in the political arena, that we have an issue that has rightly brought all sides of politics together. I join my hon. Friend the Member for Torbay (Kevin Foster) in thanking the Daily Mirror. That is perhaps unusual on the Conservative Benches, but, working with Max Johnson’s family, it has been instrumental in pushing this forward.

It has been a pleasure to support the Bill at every stage. I have done so while thinking of Max and Keira. It is their Bill. Let us not forget that it is thanks to the brave decision taken by Keira’s dad on that most difficult of days that four more people are alive today who otherwise might not be. I can think of no better reason than that to ensure the Bill reaches the statute book as soon as possible.