Organ Donation (Deemed Consent) Bill

Geoffrey Robinson Excerpts

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

[Mr Geoffrey Robinson (Coventry North West) (Lab)]

It is a great pleasure to see the Minister in her place. I was very pleased that yesterday afternoon she put out an official statement of support from the Government. They will be supporting the Bill, not just on Second Reading but through all its stages. That is very welcome and I appreciate that very much.

I am also very pleased with the support—I had no doubts at any stage—of the shadow Minister who will be speaking from the Opposition Front Bench. I must also mention that early on the Prime Minister indicated to me she had a personal interest and lent the Bill her personal support. I would like to say a sincere thank you to the Prime Minister for that. Rounding off this stage of my thanks, I have to mention the Leader of the Opposition. His leadership and support, and that of his office, has been invaluable. I have seldom seen such unanimous support across the House, with the 11 Members who have sponsored the Bill representing seven political parties in this House. Carrying that unanimity and commitment to the country and reaching a consensus there would mean that the Bill can become a very effective Act.

[Jonathan Ashworth (Leicester South) (Lab/Co-op)]

I pay tribute to my hon. Friend for using this opportunity to bring the Bill to the House. I hope that the House gives its endorsement to the Bill today. I note that the Government have welcomed the Bill. I assure him that if the Government work with him to ensure its speedy passage, they will have the Opposition’s full support.

[Mr Robinson]

I am grateful for that and thank my hon. Friend very much indeed. His support throughout has been consistent, welcome and a great help. I am pleased to tell the House we also have the support of three previous Prime Ministers. Only Sir John Major felt that he could not support us. He said he did not know enough about it, which was sometimes his problem as Prime Minister.

As I was saying, we should try to carry the unity of the House on this issue to the country and raise public awareness about the need for the opt-out solution we are proposing. That would be a major achievement. The Government have launched a consultation on the matter. My hon. Friend the Member for Barnsley Central (Dan Jarvis), who was with me in the early meetings, urged that course upon the Government. They responded quickly and to great effect: the response has been unprecedented. I am informed, unofficially, that the number of individual responses—separate, individually written letters—is now over 11,000, which is a record for any public consultation of this kind. The consultation does not finish until 6 March. I hope that the campaign will create sufficient awareness for people to find the opportunity to participate in it online via the Government’s website.

The predominantly positive response that we have been led to understand the public consultation is producing is hardly surprising—it is very welcome, but hardly surprising. According to recent reliable polling from the British Heart Foundation, up to 90% of the public said they were in favour of donation in principle, but that only 36% get around to signing the register. I think that many people are guilty, as I was for a number of years, of finding themselves in that position. That in itself suggests how effective an opt-out register could be.

Why are we actively looking towards implementing an opt-out solution at this stage? In England, for example, the situation is disappointing. We have some of the lowest rates of consent for organ donation in western Europe. Low family rates of consent have been one of the major barriers to the donor rate increasing. In effect, that prevents one third of available organs from being used. They go straight to the grave or to the crematorium. None of us likes to think about the worst happening, and it is challenging to have conversations with family and loved ones about one’s wishes after death. However, one of the Bill’s principal aims must be to encourage open discussions among families, so that an individual’s real wishes are known to their nearest and dearest. I think it reasonable to say that in the majority of cases, given the outcome of the consultation and what we know from the polls, people would wish to donate their organs after their death.

However, there will be those who take a different view. Perhaps even one or two in the Chamber feel that way and will make their feelings known in the debate. In no way do I wish them to feel that they have been railroaded into decisions that they do not wish to take. Therefore, I emphasise to those who feel that they cannot lend their support or have doubts about the Bill at this stage that soft opt-out provisions will be built into it. Naturally, I imagine that there will be a fair amount of discussion about those in Committee. I assure hon. Members that, as the Bill’s promoter, I give them my fullest personal commitment to approach discussions about the opt-outs in the spirit of sympathetic open-mindedness.

[Theresa Villiers (Chipping Barnet) (Con)]

I am here to support the hon. Gentleman’s Bill, but I ask him to engage with the Jewish community to see whether he can allay their concerns about how it might affect observance with their religious teachings.

[Mr Robinson]

I am very pleased to have taken that intervention. I remember that one of the former Prime Ministers who supports us—Gordon Brown—wanted to introduce an opt-out system, but came up against a fairly immovable block in the then Chief Rabbi, Rabbi Sacks, who said then that at no cost could he commit the Jewish community to supporting it. That rather held matters up and the Government were then overtaken by other matters with that Bill, but yes, we will do that. I have been in touch, and we believe that the council itself has made an official statement supporting the Bill.

[Mr Jim Cunningham (Coventry South) (Lab)]

I congratulate my hon. Friend on his Bill, and I know that he has put a lot of hard work into securing it. As any Member who has dealt with a Bill in the House of Commons knows, a lot of effort goes on behind the scenes. He has given important assurances on an opt-out, particularly to communities such as the Jewish community, and it is important to convey that message across. I hope we will get further support on that basis.

[Mr Robinson]

I am grateful to my hon. Friend and my honourable colleague from our shared city—we are both immigrants to it, but we hold it very dear to our heart—and his support along those lines is most welcome. I notice that my right hon. Friend the Leader of the Opposition has come in. I repeat my warm tribute to his leadership on the issue and to the tremendous help that I have received from his office in backing up the Bill. I am deeply grateful. I also took the opportunity to express a sincere thank you to the Prime Minister, who has taken a personal interest and lent her support. I know that he will welcome that, too.

[Jeremy Corbyn (Islington North) (Lab)]

I apologise for having just arrived, Mr Speaker. I thank my hon. Friend for what he said. It is wonderful that he has got this Bill introduced, and I hope that today the House can pass it and thus save an awful lot of people’s lives in future.

[Mr Robinson]

That is indeed our aim. However, I shall sound certain notes of caution about what we need to do to ensure that we get and successfully utilise that increase in organ donation. We have to watch out for certain things, and I will mention those as part of the serious approach that my right hon. Friend would expect from me and that, in due course, he would want to see his Government adopt and perhaps have to implement. I hope that that is the case, too.

We have a proud history of innovation in the field of transplantation. I think that time prevents me from going into any detail on that—indeed, I am getting the message from you, Mr Speaker, that time is of no essence, so let me mention a few things that have been achieved. In our proud history, Britain’s first living donor transplant took place on 30 October 1960 at the Royal Infirmary of Edinburgh. The operation was between identical twins, because at the time, the problems of rejection were still a long way from any sort of reliable solution. In November 1965, the first transplant in the UK from a “non-heart beating” donor was carried out, again at the Royal Infirmary of Edinburgh. In 1968, there were the first successful heart and liver transplants. There is a proud tradition, and I am sure that the whole House will join me in congratulating the NHS and all the staff concerned in this department on their magnificent work.

[Mark Tami (Alyn and Deeside) (Lab)]

I thank my hon. Friend for introducing this Bill. I think that he will move on to the point that transplant surgery is now becoming routine and people are living normal, long lives as a result. When I was growing up, a heart transplant was the No. 1 item on the news, and now they are being carried out every day.

[Mr Robinson]

Indeed, and the consequence is that to some extent we are victims of our success. We now have a growing need for organs and a growing waiting list for them, as I will mention. That problem must concern us all, and as a country, we must find a proper resolution.

[Caroline Flint (Don Valley) (Lab)]

I congratulate my hon. Friend on his campaign. There are 90,000 residents in Doncaster who are on the organ donation register, and I am proud to be one of them. However, 54 patients in Doncaster are waiting for transplants. Unfortunately, Andrew Lake, the brother of my constituent, Amie Knott, died waiting for a double lung transplant. Is it not the case that we need to secure more people who are prepared to be part of this service, so that we can save more lives?

[Mr Robinson]

The whole House will be touched by the constituency case that my right hon. Friend raises, and it will wholly agree with what she says about the need to increase the availability of organs. We believe in a system that everybody is part of unless they choose to opt out. I have made it clear that the opt-out procedure would be simple and that we would respect those who choose to do so. If we can get the Bill through, it will not make an immediate difference tomorrow, but I am sure that over a period of years, as the activity rates and our capacity to handle donations successfully increase, the availability of organs donated will also increase. That is why I am so keen to get the Bill through Second Reading today.

Since those early successes, some 50,000 people in the UK have been given a second chance and a new lease of life, thanks to organ donation. I am sure that the whole House will join me in expressing the gratitude that we all feel to the NHS for that. Even if our history is a proud one, we cannot rest on our laurels. Unaccountably, over the past few years, the steady increase in the rate for donation and transplantation has slowed. In the past four years, to be more precise, it has in effect plateaued in England.

Against that background, there has been growing concern about the fact that a certain amount of inertia is setting in. The most recent figures for the whole United Kingdom make disquieting reading. As of March 2017, 6,388 patients were registered on the active waiting list for a transplant; in the same year, 457 died while on the active waiting list. Perhaps more significantly, over the same period, 857 people died after being removed from the active waiting list because while on it they had become too ill to receive a transplant. That shows how severe the situation is.

[Liz McInnes (Heywood and Middleton) (Lab)]

I congratulate my hon. Friend on the Bill, which I support. Many of my constituents have contacted me about children who have died for want of a suitable organ donor. I wonder whether my hon. Friend will explain at some point how the Bill will benefit children who need an organ donor.

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[Mr Robinson]

I think that that is one of the most moving aspects. We held a reception last night. Many of those present had benefited from organ donations, but in a number of cases it was their children who had benefited. I will indeed say more about that shortly.

[Tony Lloyd (Rochdale) (Lab)]

My hon. Friend is making an excellent speech, and I am, of course, here to support him. The sad reality is, however, that behind every organ donation is someone who has died. It is right and proper for there to be facilities for children to receive donated organs, but that means a very sensitive time for the donor’s parents, who have lost a child of their own. How might it be possible to deal sensitively with those families whose children have died?

[Mr Robinson]

We would encourage that across the board. Although my hon. Friend draws attention to a vital area, it is only one of those that we hope to address. As I am sure he will understand, different issues seem equally important to those who are in other categories. I do not claim that my Bill on its own is a panacea for our problems, but I am convinced that it is a vital prerequisite to the imparting of a new impetus to the increase in organ donations that we know the country urgently needs.

[Dame Cheryl Gillan (Chesham and Amersham) (Con)]

I congratulate the hon. Gentleman on the Bill, which I support. May I pursue the point made by the hon. Member for Rochdale (Tony Lloyd)? I believe that in 2016-17, after Wales had introduced presumed consent, 13 out of 33 families withdrew that consent when they were asked about it. Can the hon. Gentleman assure me that the Bill will allow room for relatives still to be consulted and to withdraw the consent? After all, it is being asked for at a very sensitive time. I want us to ensure that families are given that latitude, while trying to do everything possible to increase organ donation.

[Mr Robinson]

The right hon. Lady raises a difficult but important issue. As part of the soft opt-out, there will certainly be arrangements for families and close friends to express their opinions. It is interesting to note that in Spain, which has no register and operates what is effectively an opt-out system, there is always consultation with every family who can be reached in time in the absence of a register, and as a result of those consultations there is a tremendous rate of consent. It can, of course, work the other way as well, and the Bill will make full provision for that. It needs to be carefully worded, and I invite those with a particular interest to look at it, but the intention is to give families in that position an effective veto. I may not have fully picked up the point made by my hon. Friend the Member for Rochdale (Tony Lloyd).

[Michelle Donelan (Chippenham) (Con)]

I, too, congratulate the hon. Gentleman on the Bill, which I support. Does he agree that the point about Spain highlights the fact that the Bill is not actually the answer, but only part of the solution? After its Bill was passed, Spain took 10 years to increase the rate of donation by investing heavily in transport and infrastructure and a national organ donation system.

--- Later in debate ---

[Mr Robinson]

Yes. I shall refer to some of the circumferential investment that will be necessary to ensure that our own system is successful. Of course we would be starting from a much higher level, because our infrastructure—the nursing provision that is so vital, the body of professional surgeons and the specialist units—is much greater than it was in Spain. However, we recognise the success of the Spanish system. At its heart is the ability to reach the families and talk to them. That should happen in any event, but we believe that when it happens against the backdrop of an opt-out system, it starts from a different position and is—we hope—likely to produce a more positive result.

[Sir Roger Gale (North Thanet) (Con)]

I think it fair to say that most, if not all, Members who are present today are here because we support the Bill and want to see it on the statute book. But—and it is a “but”—the hon. Gentleman said in his response to the point made by my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan) that friends and family would be consulted. I think it important for the Bill to be very precise if the matter is not to be brought into dispute and if a wave of withdrawals is not to be generated, which is the last thing that we want. Will the hon. Gentleman ensure that that issue is very clearly addressed when the Bill goes into Committee, as we hope that it will?

[Mr Robinson]

I am grateful for the hon. Gentleman’s thoughtful and apposite intervention, and I can give him that assurance. Obviously, as the Bill’s promoter, I shall take a personal interest in ensuring that the right balance is struck. We should bear in mind that the balance will be struck in a context in which opting out is the law of the land, which I think changes the starting point of the discussions with families, but those discussions should nevertheless be handled with proper caution and respect in view of the moments of agony and the awful decision making with which families are faced.

[Jo Stevens (Cardiff Central) (Lab)]

I am here to support the Bill, but, as a Wales Member, I want to provide some reassurance. Wales already has legislation that has been working and that deals specifically with that point, and we have a higher donation rate than any other nation in the UK. I welcome the Bill, and I hope that everyone present will support it today.

[Mr Robinson]

I am very grateful for that intervention, in every sense. I was going to come on to the situation in Wales, which has been unfairly and prematurely judged to be a failure—even by as eminent an authority as the Nuffield Council on Bioethics, which yesterday opined on the basis of figures produced only one year into the scheme. However, the latest serious peer-reviewed article in The BMJ expresses a different opinion, some three or four years into the scheme. It was written in February this year, so it is up to date, and there have been a few years in which to observe the trends. According to the author, a respected journalist, Wales has more registered donors and has experienced fewer family refusals and more living donations than any other part of the UK since the introduction of an opt-out system. The article concludes that

“none of the concerns about deemed consent”

—concerns rightly expressed by Members this morning—

“have materialised”.

The signs from Wales are very good, but these are early days, and I think it behoves us to note the caution expressed by the Nuffield Council on Bioethics. We want to proceed carefully and with all the necessary infrastructure in place. One of the great aspects of our present system is that it is trusted by the public, and we cannot and will not put that trust at risk. We must ensure that the new system is introduced properly. What I have seen at first hand of NHS Blood and Transplant suggests that it is a very well organised outfit.

We do have a functioning register; we do know what we are doing; and we are building up our essential counselling nursing capability. As we build it up, some limited investments will also be needed in facilities, for any growth in demand will lead to a growth in the requirement for facilities. I say to the Minister, who is looking rather grim at the moment—[Interruption.] That’s better. I say to her that the NHS is very much in favour of this; I will quote a figure in a moment. Its thoughts as to the extent to which we can benefit in terms of increased numbers of organs and saved lives are encouraging, but it adds that its requirements for additional resources must be met. All I can say to hon. Members in that respect is that the amount of money required—the small requirement of resources in terms of software, mainly for the training of the nurses, and hardware and some facilities—is minuscule in relation to the good it can do. I think of the sheer joy we can see in those, particularly the children, who have had the benefit of a transplant.

[Philip Davies (Shipley) (Con)]

The hon. Gentleman glossed over Wales in his remarks, but Welsh Assembly Government research showed that the introduction of the opt-out has had no impact on the number of organ donors in Wales, while the organisation CARE has said it has led to a reduction, not an increase, in the number of donors. What learning has the hon. Gentleman taken from the experience in Wales, and what measures are there in his Bill to address some of the flaws there might have been in that system in Wales?

[Mr Robinson]

That is a very moderate intervention from the hon. Gentleman, for which I am grateful. He is probably looking at the recent remarks and quotes from the Nuffield Council on Bioethics, which relate back a year, if I am not mistaken, to 2016 or ’17, but we are now in 2018 and the situation has evolved. I recommend to him an article I have here in The BMJ; I will leave it out for him if he would like to read it. It gives a full account of the situation in Wales, and is very hopeful. But, as I have said, we are going to monitor this carefully, and we should be cautious, practical and realistic in our approach to the introduction of the system in the UK.

[Dame Cheryl Gillan]

May I give the hon. Gentleman some good news on Wales? The legislation in Wales was pioneering, and was much discussed when I was Secretary of State for Wales. I have been looking at the details of some of the statistics from Wales in the latest report on organ donation and transplantation activity data, and the hon. Gentleman will be pleased to note that back in 2013-14 some 1,005,213 people were opted into the organ donation register in Wales, while for the first three quarters of the years 2017-18 that number increased to 1,220,331. The fact that more people are opted into that register is very positive news from Wales.

[Mr Robinson]

It was because the figure was so low in 2013 that the Welsh Government decided to move to an opt-out system. I agree with the right hon. Lady, and disagree with those who, for some reason or another, will not look at the most recent facts and move with the situation that is developing. The situation in 2013 was bad, which the Welsh Government recognised and they then went for an opt-out system. Then there was a period of bedding-in and there appeared to be no change, but the most recent figures for 2018—as opposed to 2017 or ’16—are showing a marked improvement, and I am sure we can all rejoice at that. This is not a matter of trading economic figures across the Chamber; that is a sheer fact and one that I think we can all take great satisfaction from.

[Paul Flynn (Newport West) (Lab)]

My interest in this matter arose from a constituent—a young man—who came here and lobbied. A year later I attended his funeral because, sadly, he did not get the transplant he wanted, but he had suffered enormously in the preceding period. We have now had the opt-out in Wales, however, and, regardless of what people can do with the statistics, the fact is that people in Wales are still alive who would have died before the law was passed, and people are dying unnecessarily in England.

[Mr Robinson]

I am grateful to my hon. Friend. It was his Bill that sparked my personal interest, and I pay great tribute to the work he did in preparing that Bill, which we have adopted almost in its entirety. He will be pleased to know that we are hopeful that his Bill—from the beginning, as it were—will now find its way alongside my own on to the statute book; I know that will give him great pleasure. What he says about that individual case is certainly true. The positive news from a cautious assessment from the NHS is that, provided the opt-out system—the quintessential starting point for all these forward projections—is introduced and backed up with the necessary limited revenue and capital spending, up to 500 lives a year could be saved by deemed consent.

[Crispin Blunt (Reigate) (Con)]

I am delighted to appear as one of the supporters of the hon. Gentleman’s Bill, and am very pleased to have my name on it. I hope he will be able to look at just one thing in Committee: the issue of deemed consent involving people who lose capacity towards the end of their lives. I hope there will be more clarity in Committee to enable people who have made the decision that they want to make their organs available to do so, when just their brain is no longer of much use to anybody else and they do not have the capacity. I hope the Bill will be clear about such circumstances when people lose capacity towards the end of their lives but when the rest of the body can still be of use to others.

[Mr Robinson]

I thank the hon. Gentleman for his intervention and the fact that he agreed to be a supporter of the Bill—his name appears on the face of the Bill, he will be pleased to note. He raises an area of great concern, but it is something we will have to deal with in Committee; I am sure he will agree that it is not for Second Reading, so I will not go further into it now.

[Sandy Martin (Ipswich) (Lab)]

I thank my hon. Friend for bringing this Bill to the House, and I will of course support it. He mentions the modest investment in capital and resources needed to give effect to this when it has become law, but does he agree that by saving lives and making people healthy enough to play a full part in society, we will be increasing the ability of our country to succeed, and also—although this is obviously a secondary issue by comparison with the saving of life—we will be reducing the ridiculous amount of spend on just keeping people alive when they actually need organ donations?

[Mr Robinson]

I entirely agree with my hon. Friend and thank him for his intervention, but I would rather not go down the route of cost-benefit analysis; these are matters of life and death and are best left as such when we look at what we can do to save lives that we know can be saved.

[Hilary Benn (Leeds Central) (Lab)]

I strongly support my hon. Friend’s Bill. Alongside this measure and a number of the other things he describes, does he agree that the most important thing we can do is have that conversation with our families and loved ones, to make it absolutely clear to them that when we are gone we wish whatever bits of us are still of any use to be given to others so they might continue to live? Is that not what we really need to do to make sure that, when that difficult conversation comes to be had over a loved one who has died on a hospital bed, as many people as possible know and the family can say, “Of course”?

[Mr Robinson]

I entirely agree with my right hon. Friend. I do not know whether he was in the Chamber when I remarked on the importance of family conversations, which are absolutely vital, and also the importance of public awareness. The Government consultation has contributed enormously to public awareness. We must ourselves now set the example in terms of being registered and not opt out—I certainly have no intention of even considering that.

The other great contribution that we can make in personal terms is to hold those conversations with our own families and encourage others to do so. Public awareness will not necessarily lead to that happening, yet we know that it is at that moment when families are confronted with the awful situation that they often back off, sometimes even overriding the wishes of the deceased who happens to be a registered donor. We can do no more important work than to hold those difficult family conversations and encourage others to do so.

[Emma Hardy (Kingston upon Hull West and Hessle) (Lab)]

My hon. Friend is making a good point about making people aware of the difference this can make. Yesterday, I found out about the British transplant games, which involve live donors and people who have received an organ transplant. This wonderful event will take place in Birmingham on 2 August. I met a woman called Pat who had been a live donor, and she said that she was going to take part in the games with the person to whom she had donated an organ. I thought that was so wonderful. Obviously, no one wants to think about the worst thing happening to their family or anyone they love, but it would be wonderful to think that anything I could give when I have gone would help someone to live a fulfilling life that could even involve taking part in a sporting event like that. We should think about the future and the real difference that this can make for so many people. I am so proud to be standing here with my hon. Friend on this day and supporting his Bill.

[Mr Robinson]

I feel inclined to say that I rest my case, but I cannot quite do that just yet. I think I am okay for time, despite all the interventions. I will, however, proceed to a conclusion now, if I may.

I have quoted some disquieting statistics, including the 500 saveable lives—or avoidable deaths because of the unavailability of an organ—a year. To put it another way, if we continue with unchanged policies, some 500 of the 6,500 people on the present waiting list will, in effect, be on a life sentence and will die in the next year if no organ becomes available. I believe that the House will agree that that is simply not good enough. We can do better as a nation. We have shown that we can do that through the creation of the NHS, which is something that no other nation achieved. Here again, we can be pioneers in making transplantation more successful, principally through an increase in organ donation.

As I have said, I do not think that my Bill is the answer to all the questions—we have discussed many of the points that need addressing in the course of this debate—but my God, I am convinced that it is a necessary start if we are to regain the momentum and the impetus that we lost by moving to an opt-out system. After all, that is why this measure has been introduced in Wales, and that is why I am putting my proposal to the House today.

My hon. Friend the Member for Kingston upon Hull West and Hessle (Emma Hardy) talked about the British transplant games. Last night’s reception, given by the Daily Mirror—very fortunately—in the Terrace Room, was very moving. I met Max’s mom, as she has come to be known—Mrs Emma Johnson—and she gave us the most up-to-date news on Max, who has become something of the face of the campaign. I make no excuse for being emotional about this, and I am sure that everyone will be delighted to know that Max is still doing well. He went back to school part time last September, and it is hoped that next year he will be back full time. The hon. Member for North Devon (Peter Heaton-Jones) represents the donor family—the Ball family, whose daughter, Keira, was killed in a terrible car crash; a most unfortunate incident—and he brought to my attention something about the Max story that I did not know. Keira gave her heart to give that young boy his life, and Max’s mom, Mrs Johnson, has said how much she is looking forward to meeting the family. She says she wonders how they will feel when they put their hand on Max’s heart and feel their daughter’s heart still beating. I had a call alerting me to the fact that the hon. Gentleman wanted to take part in the debate and to refer to this, and I said that that would be great. I am sure that he will catch your eye in due course, Mr Speaker.

There are many in this House who have been affected in one way or another. If I may, I would like to mention my hon. Friend the Member for Sunderland Central (Julie Elliott), who was also at the reception last night. Her daughter, who unfortunately could not attend, has been on daily dialysis for 12 months now while waiting for a kidney. I know that my hon. Friend will also want to catch your eye if possible, Mr Speaker.

I hope that the party opposite will take it in the best spirit when I say that I would like to thank the Daily Mirror for its magnificent campaign on this issue. It shows just what a free press, fighting courageously, can achieve for a brave cause. It is, in that sense, the best of the best. I said that to their representatives very openly last night in thanking them for the campaign, and I know that they feel that they have achieved something—perhaps more than some newspapers achieve in 24 pages of exposure. The representative of the Daily Mirror told me that my thanks were welcome, but they were nothing compared with the happiness felt at the Mirror every time there was a successful transplant as a result of the campaign, especially among the young.

I have had many letters on this subject, although it is properly not appropriate for me to read from them now, as I was intending to. I shall just say that the House has an opportunity today that, while not unique, might not occur again for several years. We have the opportunity to introduce a Bill whose enactment we could achieve by the end of this year, if it receives its Second Reading today, and whose effect could begin to be felt in the following year. I believe that the House is in the mood to rise to the occasion, and I am sure that we will seize this opportunity to pass a Bill that will come to be regarded as an Act for life.

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[Mr Robinson]

I do not much like self-congratulation, and moments when the House gets self-congratulatory can be embarrassing, but on this occasion I am delighted to say that we have seen the House at its best. I say that because we have had a debate where not only have high standards of rational argument been deployed, but deep emotions—we all feel them—have not been kept from us. That unique combination today has enabled us to have the cross-party consensus of the size we have achieved, on a Second Reading of a Bill that is, perhaps, contentious in nature in some respects. I note that the Secretary of State for Health has just arrived and so, while plaudits are being awarded, may I just say that his support from the very beginning has given great encouragement to me and to my hon. Friend the Member for Barnsley Central (Dan Jarvis)?

This is a great moment for us. I hope that there will not be a Division, but I am sure that if there is one, we will win it. I am sure that we will be able to go out of the Chamber knowing that the Bill has passed its hurdle of Second Reading, that we are going into Committee and that with any fair wind from the Government by the end of the year we will have the Act—Max’s Act, as we should call it—on the statute book. I look forward to that moment and to saying that, at least in this Parliament, we did pass an Act for life, and I am delighted, on that note, to be able to conclude the debate.

Question put and agreed to.

Bill accordingly read a Second time; to stand committed to a Public Bill Committee (Standing Order No. 63).

Organ Donation (Deemed Consent) Bill

Geoffrey Robinson Excerpts

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

[The Chair]

Welcome to this Public Bill Committee on the Organ Donation (Deemed Consent) Bill. I will make some preliminary announcements: please switch electronic devices to silent; tea and coffee are not allowed during sittings; and a selection list for today’s sitting is available in the room, showing the order of the debates. In this case it is a single debate, so if you would like to speak, please do so in this part of the debate as there is no other option. Decisions on the amendments and clauses will take place in the order in which they appear on the amendment paper.

Clause 1

“Appropriate consent” to adult transplantation activities: England

[Mr Geoffrey Robinson (Coventry North West) (Lab)]

I beg to move amendment 1, in clause 1, page 1, line 16, leave out “relevant” and insert “permitted”.

Amendments 1 to 3 replace references in new subsection (6A) of section 3 of the Human Tissue Act 2004 to “relevant material” with references to “permitted material” which is defined in the provision inserted by Amendment 4.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 2, in clause 1, page 1, line 19, leave out “relevant” and insert “permitted”.

See the explanatory statement for Amendment 1.

Amendment 3, in clause 1, page 1, line 20, leave out “relevant” and insert “permitted”.

See the explanatory statement for Amendment 1.

Amendment 4, in clause 1, page 2, line 10, at end insert—

“‘permitted material’ means relevant material other than relevant material of a type specified in regulations made by the Secretary of State.”

This amendment defines “permitted material”, which will be used in new subsection (6A) of section 3 of the Human Tissue Act 2004 as a result of Amendments 1 to 3. The definition has the effect that the new provision about deemed consent will not apply in relation to relevant material of a type specified in regulations made by the Secretary of State. “Relevant material” is defined in section 53 of the Human Tissue Act 2004.

Amendment 5, in clause 1, page 2, line 11, after “of” insert

“the definition of ‘excepted adult’ in”.

This amendment is consequential on Amendment 4.

Clause 1 stand part.

Amendment 6, in clause 2, page 2, line 36, at end insert—

“( ) In section 52 (orders and regulations), in subsection (3) (statutory instruments to which negative procedure does not apply), after ‘1(11),’ insert ‘3(9),’.

( ) In section 52, in subsection (4) (statutory instruments to which affirmative procedure applies), after ‘no regulations under section’ insert ‘3(9),’.

( ) In section 52, in the list in subsection (10) (requirement to consult), after ‘section 1(11)’ insert—

‘section 3(9);’”.

This amendment is consequential on Amendment 4 and produces the result that the regulation-making power conferred by the provision inserted by that amendment will be subject to the affirmative procedure in Parliament and to a requirement to consult such persons as the Secretary of State considers appropriate before the power is exercised.

Clause 2 stand part.

Clause 3 stand part.

Amendment 7, title, line 1, leave out from beginning to end of line and insert

“Make amendments of the Human Tissue Act 2004 concerning consent to activities done for the purpose of”.

This amendment replaces much of the existing long title so as to introduce reference to the making of amendments of the Human Tissue Act 2004.

[Mr Robinson]

I am pleased to be serving under your chairmanship, Mr Wilson, as I am sure the whole Committee is. I think the sensible grouping of the amendments within the clauses will allow a natural flow, and yet if anybody among the very committed members of the Committee wishes to speak they will have an opportunity too. The idea is that it should not be a long Committee. We had a very good debate on Second Reading and we had the money resolution last night. The support for the Bill at those debates made it clear that the whole House now wants to see the Bill made law and for that reason we want to make progress as fast as we can.

Amendment 1 replaces the word “relevant” with the word “permitted” in clause 1, line 16, as the Human Tissue Act 2004 creates a new term, not already defined, to ensure that deemed consent will apply only in respect of “permitted” material. It is unlikely that many members of the public appreciate the vast scope of organ and tissue transplantation. I hope that this amendment will build on the public’s trust in the system and avoid unnecessary distress to the friends and family of the deceased if the new arrangements were also to cover novel transplants. In the debate on the money resolution yesterday, we went to lengths to stress the need to keep public confidence, as people need to be clear about what is in the Bill; I have heard some rumours circulating already that were not helpful. I think amendment 1 provides a clear distinction and we will be able to define “novel transplant” elsewhere in the Bill.

Amendments 2 and 3 make consequential changes to clause 1, again replacing the word “relevant” with “permitted”. The three amendments create an important distinction between “permitted material” and “relevant material”, which enables novel forms of transplantation, such as of faces and limbs, to be exempt from deemed consent. That underlines the point about maintaining public confidence in what we are doing.

It is imperative that the amendments are made to the Bill to ensure that consent is considered to be in place only for organs and tissues that are in line with the public’s perception of donation. I am sure we all understand the need for that. The term “relevant material” is defined in section 53 of the Human Tissue Act 2004 and is applicable to other activities in the Act.

Amendment 4 provides the definition of “permitted material” that falls within the Bill. The amendment creates a power to make a statutory instrument to set out in detail which organs will be excluded from the new approach. There can be no doubt where we stand—what is included and excluded—and that is all necessary for the public’s reassurance. I am sure we all agree that this should be established by a statutory instrument subject to the affirmative procedure, which by its very nature extends to the proposed list, or any additions or changes to it, rigorous debate and a vote if necessary.

Amendment 5 is consequential on amendment 4 and provides clarification that the provision set out in section 10 of the Human Tissue Act 2004 refers only to excepted adults. It is quite clearly defined in the legislation. Amendment 6 provides that the SI set out in amendment 4, on novel transplants and innovations to be excluded from the new approach to organ donation, will be subject to the affirmative procedure.

I think that covers quite a chunk of the Bill. I invite the Minister to comment on the last part of it. It would be a very happy responsibility.

[Peter Heaton-Jones (North Devon) (Con)]

It is a pleasure to serve on this Committee. I start by paying unequivocal tribute to the hon. Member for Coventry North West for his stewardship of the Bill. There are many others who have played a significant role in getting us to this stage, and it is testimony to the fact that the Bill has received literally all-party support that the names of signatories from all seven parties represented in the Chamber appear on this private Member’s Bill. The fact that the Front-Bench teams of both Her Majesty’s Opposition and the Government support it is extremely significant. It shows the widespread support, and how important the measure is. It is truly a cross-party endeavour.

I share the hope that has been expressed that Committee stage will not take long, because there is such unanimous agreement. I will briefly share a story that I had the privilege of telling when we debated the Bill in the Chamber back in February, because it is very significant. I recognise that doing so will perhaps bring back some difficult memories for those involved, but I hope it will be inspiring. It is the story of Keira Ball.

Keira and her family were involved in an accident on 30 July last year. There was a road traffic collision on the A361, the North Devon link road in my constituency, only about five miles from my home. Sadly, despite the best efforts of the emergency services and paramedics, young Keira passed away two days after the accident. Her mother and brother were very seriously injured, leaving her father to take on his own the agonising decision that he wanted his daughter’s death to give life to other people, and therefore that young Keira’s organs should be donated. In that inspirational moment, Keira’s parents, Joe and Loanna Ball, have given hope to so many more people. They have also given life to the Bill and seen it get as far as it has. I hope it will proceed without much further ado.

Four people are alive today because of the decision taken by Keira Ball’s father after that accident. Keira donated her kidneys, heart, liver and pancreas. One of her kidneys was given to a man in his 30s, who had been on the waiting list for two and a half years. The other kidney was given to a woman in her 50s, who had been on the waiting list for nine and a half years, and a young boy received Keira’s pancreas and liver. Keira’s heart was given to a 10-year-old boy, who in many ways, has become the figurehead of the excellent campaign. I speak of course of Max Johnson, who is alive today because of the brave decision made by Keira’s father in the aftermath of that awful accident. This is, in many ways, Max’s law and Keira’s law.

Those two young people are an absolute inspiration and show why this excellent Bill, which I hope will become legislation before long, will genuinely help to save lives. For that reason, I am delighted to be serving on the Committee and to be a part of this excellent Bill’s truly cross-party support. I hope that we can move forward so that it reaches the statute book, because if there is one important job that we should be doing in this place, it is saving lives, and that is what the Bill does.

--- Later in debate ---

[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.

[Mr Robinson]

So many generous words have been extended in my direction that I feel that some redressing of the balance is necessary. I was lucky, and I hope I chose my Bill well. Judging by the support we have had through all its stages, it seems as though there is a groundswell of approval, opinion and acclamation for it, but one thing must not be overlooked, and that is that the Bill would have been very difficult if not impossible but for the support of the Government, including the Prime Minister in person. Throughout this, she has stuck to what she said in Liverpool.

I must also say that there have been tight moments, awkward moments, but the presence of the Minister with responsibility for the Bill, who is with us today, has throughout been one of charm—a smoother who, with her grace, has been able to get us through those moments too. She said it had been a pleasure to work with the Health Committee and it has indeed, and it has been a great pleasure to work with the Minister.

We keep saying these things, but perhaps we should cut down on further compliments to each other until we get the Bill through the Lords. On that basis, we are all in this together and still working hard, because we are not there yet, and who knows what the Lords will throw at us—

[Jim Shannon]

It is the first half.

[Mr Robinson]

I think that a little restraint would be a good thing. Thank you very much indeed, Mr Wilson, as always, and the Clerks. I have received excellent briefings—models of clarity—and I advise hon. Members to take a set now, in case they are challenged by any questions in their constituency work or anything like that. The briefings deal clearly with a lot of the most difficult issues. Again, Mr Wilson, it is a pleasure to serve under you. Thank you.

Amendment 1 agreed to.

Amendments made: 2, in clause 1, page 1, line 19, leave out “relevant” and insert “permitted”.

See the explanatory statement for Amendment 1.

Amendment 3, in clause 1, page 1, line 20, leave out “relevant” and insert “permitted”.

See the explanatory statement for Amendment 1.

Amendment 4, in clause 1, page 2, line 10, at end insert—

“‘permitted material’ means relevant material other than relevant material of a type specified in regulations made by the Secretary of State.”

This amendment defines “permitted material”, which will be used in new subsection (6A) of section 3 of the Human Tissue Act 2004 as a result of Amendments 1 to 3. The definition has the effect that the new provision about deemed consent will not apply in relation to relevant material of a type specified in regulations made by the Secretary of State. “Relevant material” is defined in section 53 of the Human Tissue Act 2004.

Amendment 5, in clause 1, page 2, line 11, after “of” insert “the definition of ‘excepted adult’ in”.— (Mr Geoffrey Robinson.)

This amendment is consequential on Amendment 4.

Clause 1, as amended, ordered to stand part of the Bill.

Clause 2

Consequential amendments

Amendment made: 6, in clause 2, page 2, line 36, at end insert—

“( ) In section 52 (orders and regulations), in subsection (3) (statutory instruments to which negative procedure does not apply), after ‘1(11),’ insert ‘3(9),’.

( ) In section 52, in subsection (4) (statutory instruments to which affirmative procedure applies), after ‘no regulations under section’ insert ‘3(9),’.

( ) In section 52, in the list in subsection (10) (requirement to consult), after ‘section 1(11)’ insert ‘section 3(9);’”.— (Mr Geoffrey Robinson.)

This amendment is consequential on Amendment 4 and produces the result that the regulation-making power conferred by the provision inserted by that amendment will be subject to the affirmative procedure in Parliament and to a requirement to consult such persons as the Secretary of State considers appropriate before the power is exercised.

Clause 2, as amended, ordered to stand part of the Bill.

Clause 3 ordered to stand part of the Bill.

Title

Amendment made: 7, in title, line 1, leave out from beginning to end of line and insert—

“Make amendments of the Human Tissue Act 2004 concerning consent to activities done for the purpose of”. —(Mr Geoffrey Robinson.)

This amendment replaces much of the existing long title so as to introduce reference to the making of amendments of the Human Tissue Act 2004.

Bill, as amended, to be reported.

Organ Donation (Deemed Consent) Bill (Money)

Geoffrey Robinson Excerpts

Money resolution: House of Commons
Tuesday 11th September 2018 Commons Chamber

[Mr Geoffrey Robinson (Coventry North West) (Lab)]

I thank the Minister for her kind words. I say right from the start that she and the Government have been an invaluable asset in getting the Bill to this stage. It has been supported throughout the House of Commons, and I was delighted with that. All the party leaders in this place have supported it. I must pay tribute to the tremendous support that I have received from the office of the Leader of the Opposition and from my right hon. Friend the Leader of the Opposition himself. All that taken together—plus the Prime Minister’s considerable personal support—means that we can now have a money resolution, which we are delighted to accept. It provides £18 million for an essential public awareness campaign, which is intended to make it clear to the public what exactly the Bill does, why we are doing it and how it will operate. If we lose public support, we have lost everything, so this money will be well spent.

The Government are confident that the other money linked to the programme can be found from their savings and—to give credit here, too—for the first time we have a long-term commitment to funding of £20 billion over 10 years. We should be able to find a share of the other resources we shall need—the increase in surgeons, nurses and facilities—from that and from the savings that the Act itself will bring after the first year of planning, when it comes into operation. The cost of long-term and chronic care for kidney patients is enormous. The savings are therefore real, and we take the Government’s assurance that, together with the money resolution, that will be sufficient for our present purposes.

Having thanked all those concerned and everybody in the Chamber now, I commend the money resolution to the House.

Question put and agreed to.