(6 years, 2 months ago)
Public Bill CommitteesWelcome 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
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.
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.
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.
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.
I welcome the amendments described by my hon. Friend the Member for Coventry North West, to whom I am grateful for taking this important Bill forward.
As the only Welsh MP serving on the Committee, I can speak from experience about the positive difference that a similar law is making in Wales—I am glad to see a Welsh Labour Government leading the way. More and more families than ever before are talking about organ donation, and the importance of talking to families about organ donation was highlighted when, sadly, we lost my father nearly seven years ago. My family’s highest priority was the conversation about organ donation.
Since 2015, when the Welsh Government’s presumed consent law was introduced, there has been a big increase in the percentage of families who feel that they can say yes at an extremely difficult time, honouring the wishes of loved ones who wanted to donate their organs after death. The figure was 58%; it has now increased to 70%. To put that in context, the number of families in England giving permission for the organ donations of their loved ones has not increased during the same period. Hundreds of families in England are still vetoing transplants even when their loved ones have opted into the organ donor register.
The Bill will hopefully spark a cultural change in England as a similar law has done in Wales, but the legislation needs to go hand-in-hand with a public awareness campaign that asks people to have the conversation; that is what happened in Wales. I welcome the cross-party support for the Bill.
I thank you Mr Wilson, as well as my hon. Friend the Member for Coventry North West, who introduced this private Member’s Bill, and I take pleasure in the cross-party support for the Bill.
There is no doubt that the Bill will make more organs available for transplant, which, as many people here know, is a very personal issue to me, as my daughter is on the kidney transplant list. Only if more organs are made available can lives be both changed and saved. We must always remember those who donate their family members’ organs, because that is such an act of selflessness. Having spoken to many donor families, seeing that lives are saved or improved by doing that hopefully gives them some comfort in what must be the most horrific of circumstances.
I draw the Committee’s attention to a couple of important points. For the Bill to work, there must be an appropriate public information exercise, there must be education, and there must be a triggering of conversation in families, workplaces and schools, about the issue of transplantation. It is a very real issue that can affect anybody, in any walk of life, at any time. Only by talking about the issue openly do people gain a real understanding of what others want and realise that there is nothing to be frightened of in transplantation. Adequate time and resources must be given to the health service and other bodies for the Bill to be implemented properly and successfully—it is important for all concerned that that happens.
I will not go on any longer because there is cross-party agreement. It is very positive when a measure passes through the House and there is genuine cross-party agreement for improving the quality of lives and, literally, making the difference between life and death of people in this country.
It is a pleasure to serve under your chairmanship, Mr Wilson. In my brief remarks, I will first pay tribute to the hon. Member for Coventry North West, to the Minister, and to the Government and all parties for working together in this way, as has been described by many Members on both sides of the Committee.
It is a pleasure to serve under your chairmanship, Mr Wilson, and to be part of this historic occasion. I pay tribute to my hon. Friend the Member for Coventry North West, the Minister, and the cross-party collaboration that has ensured we can today wish the Bill a successful journey towards becoming law.
It is important to say that the Bill is not about taking away choice. Even though it is significant and historic, following the good work done in Wales, the Bill will mean that people will still have a choice. Opting out will be simple and easy, and the views of family and friends will not be dismissed, but importantly—I say this as someone who has been an organ donor for most of her adult life, as well as a blood donor—we have to answer the question, “If one of us, or one of our loved ones, were in need of an organ transplant, would we want to have it available to us?” I think we would unanimously say yes. If that is the case, we have to ask how to make sure that chance is available.
I have been struck by the campaigns outside of the House, including the Daily Mirror’s “Change the Law for Life” campaign and the support of Kidney Care UK, the British Heart Foundation and the British Medical Association. All have done their bit to make this issue so important and put it in the public sphere, but for many of us, the personal stories have had the most impact. I will cite two: the first is that of Amie Knott, from Thorne in my constituency, whose brother Andrew sadly died waiting for a transplant. She has been in touch with me and other hon. Friends across South Yorkshire to get support for the legislation, but she has not stopped there. She is continually out and about in Thorne, Doncaster and beyond, trying to encourage people to sign up to the organ donor register. I pay tribute to her.
When I took part in a television programme earlier this year, one of the guests was a mum whose very young daughter had died, and who had made the very important decision to allow her daughter’s organs to be provided for transplant. It was not an easy decision, but she said, “I had to ask myself the question: if it was the other way round and I was a mother with a child in need of a transplant, would I want that to happen? At this very emotional time, trying to cope with all my feelings and my hurt and anger at losing my daughter, how could I do something positive, or allow something positive to come out of this sad situation?” That probably echoes many of the conversations we have with family, friends and constituents.
I sincerely hope that we can ensure that the Bill is on the statute book as soon as possible. However, as my hon. Friend the Member for Sunderland Central said, the talking must not stop. People can go on the register today or tomorrow, but the talking must take place within families as well. Too often, when people signed up to be on the register, that conversation did not take place, and on too many occasions families dealing with the tragedy of losing a loved one override their loved one’s wishes. Let us ensure that the conversation does not stop with proceedings today, and certainly does not stop when the Bill becomes law. I commend everyone on the Committee and beyond for the positive contribution they have made.
It is a pleasure to serve under your chairmanship, Mr Wilson. As the Democratic Unionist party’s spokesperson on health, I add my support to the hon. Member for Coventry North West, who has endeavoured courageously to push the Bill through. Every one of us is greatly impressed by him. I put my hands on his shoulders last night and said, “You’re making history tomorrow, boy.” We are all pleased that he is able to do that.
I am also pleased that the Minister responded right away in a positive fashion and ensured that the Bill would become a law, through Government support. Today, as happens often in this House—we could probably see it happen a wee bit more, if we are honest—we can all work together collectively to change lives and make things better. It is important for me. The hon. Gentleman asked me if I would be on the Committee, and I was more than happy to do so, to add my support in a small way to the legislation coming forward.
Why is this important? Every one of us has told a story, and we do that because those stories shape who we are as individuals. I met a wee nephew, Peter, who was born with only one small kidney the size of the wee thumbnail on my hand, so from an early stage he was in need of a kidney transplant. The problem for him was that getting the right donor was difficult. At one time his mother was to be the donor, but then she fell pregnant and that was not possible. As it turned out, another kidney became available in the meantime, and from being the small boy who was not physically able to do much and whose face was—if I can use these words—“custard yella” because of his kidney malfunction, his life was changed. This wee boy loved racing motorbikes and wanted to do a newspaper round but could not do that, and the donation totally changed his life for the better. I was therefore keen to be on the Committee because right away I can see the benefits that will flow from this legislation.
The other story I want to tell is one that a gentleman from my constituency came to tell me. His son was injured in an accident in which unfortunately a lady was killed. Ultimately his son’s life-support apparatus and machinery was turned off. I tell the story because he donated all his son’s organs, which then gave life and improved lives as the organs benefited a number of people.
Before I became a Member of Parliament, I was on Newtownards council, which thought it would be good to create a memorial garden in the council’s area. We therefore have a memorial garden in the main town of Newtownards, where families who have lost someone, or whose family members’ organs have been donated—whatever the case may be—can go and have a wee bit of contemplation or quiet time for remembering. The reason I want to tell these stories is because they are all part of why we need the Bill to go through, and of how important it is for the Minister and the Government to support the Bill promoted by the hon. Member for Coventry North West.
The right hon. Member for Don Valley, who spoke before me, made a compelling point; everybody made a compelling argument. The right hon. Lady made a reference that I was going to make. I am glad that was done and I will do it again. In this House we always repeat things, but that is by the way. It is important that those who feel they cannot go with this can opt out. That is what the legislation does. It does not compel anybody to do anything, but it gives an opportunity. That is the important issue that the right hon. Lady drew attention to, which I wish to endorse.
I have opted to carry an organ donor card since I started driving, and that was not yesterday, Mr Wilson. In Northern Ireland, legislation requires someone to tick a box on their driving licence application to declare themselves a donor. I have been doing that all those years. I still have the wee donor card and the wallet, which is long-time faded, as it has been there for 40-plus years. It is important that we move this forward.
In conclusion, we have a consensus and a collective opinion. We see legislation that can change lives for the better. That is the great pleasure of coming here as a Member of Parliament. It gives pleasure to be an elected representative at any time, be it on a council, Assembly or in the House. To come forward and be part of a legislative change that brings good gives a good feeling. Today is a good day for Parliament. I thank everyone for their contribution, especially the hon. Member for Coventry North West, and the Minister for supporting the measure so enthusiastically. That means something to us all.
Mr Wilson, it is a pleasure to serve under your chairmanship. I rise to support the amendments in the names of the hon. Member for Coventry North West and the Minister.
I rise only briefly to say that I am a convert. Originally, when I was Secretary of State for Wales, I was not convinced that an opt-out system would be beneficial. I have changed my mind; when the facts change, one should, as a politician, change one’s mind. One of the things that has changed my mind is personal contact with a family where an organ will be needed to save a young man’s life. There is nothing more powerful than having that presented to one as a politician. That means that all of us must have an open mind about so many things.
The way the trend has been going, particularly in Europe, is interesting. I think now more than 24 countries in Europe have some form of opt-out system. Although we have not yet really seen the benefits in Wales of the legislation that came in in December 2015, I frankly think that we need to improve the mathematical odds. We will do so only by creating a culture in which organ donation is spoken about, not in hushed tones or with accompanying difficulty, so that it becomes part of the common parlance.
The testimonies given by other Members in Committee show that the fact that a loved one may go, but parts of that loved one can contribute to saving or enhancing the lives of others, has to be a good thing. I support the amendments and hope the Bill gets a very fair wind so that it becomes law.
It is a pleasure to serve under your chairmanship, Mr Wilson, and with colleagues across the Committee. Without exception, everyone in the room has been a passionate advocate for organ donation. I am grateful for all the efforts made to promote this important procedure and movement.
With your indulgence, Mr Wilson, I would like to reflect on some of the comments made by members of the Committee before I address the amendments in detail. The Government fully support the Bill and are grateful to the hon. Member for Coventry North West for promoting it. The amendments are a tidying-up exercise and I put my name to them.
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.
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.
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—
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.