Organ Donation (Deemed Consent) Bill

Peter Heaton-Jones Excerpts

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

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

I am delighted to be here to support this Bill today. In doing so, I will not rehearse many of the arguments that have been so ably put already, not least by the hon. Member for Coventry North West (Mr Robinson), whose speech on its own was enough to persuade, I hope, all Members to support this excellent measure today. I am here to tell one story; a story that was initially raised by the hon. Gentleman. It is the story of my constituent, young Keira Ball, and her family.

On Sunday morning, 30 July last year, there was a road traffic collision on the A361, the North Devon link road. It took place only about five miles from my home in North Devon on a stretch of road that is notorious for accidents and that we are working hard to improve.

Two vehicles were involved in the accident, one of which was a car carrying members of the Ball family: Keira Ball, her younger brother Brad and their mother Loanna. Their vehicle was in a collision with another. The paramedics, emergency services and all the NHS staff of the three separate hospitals to which those three people were taken undertook brilliant work. But young Keira Ball sadly passed away two days later, on the Tuesday afternoon. She was nine years old. Her mother and brother were very seriously injured. Immediately after Keira’s death, her father Joe took the agonising decision that he wanted his daughter’s death to give life to other people and that young Keira’s organs should be donated.

I have had contact this week with Joe and Loanna Ball, who live in Barnstaple in my constituency. In particular, I sought their permission to tell Keira’s full story today. I wanted to ensure that they were happy for me to do so, which indeed they were. They recognise, as I do, that this story could be an inspiration to others. It could ensure that others sign up for organ donation and will give strength to those who face similar circumstances.

Following the decision by Keira’s father, four people are alive today who otherwise would not be. 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 an organ 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. A young boy received Keira’s pancreas and liver. Keira’s heart was given to a 10-year-old boy who has very much become the figurehead of this campaign and who has been mentioned during this debate: Max Johnson. It is Max who is in many ways at the forefront of this excellent campaign. Max is alive today. It was so good to hear from the hon. Member for Coventry North West and those who were at the reception last night that Max’s mum Emma is here to watch the debate and to hear that Keira’s family are so pleased to have given life to her little boy.

That is Keira’s story and it is Max’s story. It is a story of how a very brave—and, I am sure, very difficult—decision to allow Keira’s organs to be donated has given life to four other people who otherwise would probably not be here today. That is surely the best possible argument for supporting the Bill, which will ensure that more organs are available for donation. Keira’s and Max’s story demonstrates that more organs mean more saved lives.

I welcome and fully support the Bill. Many people deserve credit for getting it to this stage, including the hon. Member for Coventry North West, whose Bill this is; other hon. Members mentioned today who have pioneered similar legislation that has not reached this stage for various odd parliamentary reasons; the Government, who have said that they fully support the Bill; and the Minister for personally driving it forward. I also give credit to Her Majesty’s Opposition, and was delighted to hear their spokesperson ensuring the smooth passage of the Bill from the Dispatch Box. It is extremely significant that the names of right hon. and hon. Members from all seven parties represented in this House appear on the Bill.

I pay tribute to the campaign by the Daily Mirror that features Max, who has life because of young Keira Ball. It has really helped to push this issue forward. Many people deserve, quite rightly, to have a stake in what I sincerely hope will be the Bill’s success. As I support the Bill, which I will do at every stage, I will be thinking of Max and Keira. It is their Bill and it is thanks to the brave decision taken by Keira’s dad on that most difficult of days that four more people have life who might otherwise have not. That is the best argument for seeing this Bill reach the statute book.

Organ Donation (Deemed Consent) Bill

Peter Heaton-Jones Excerpts

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

[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.

[Tonia Antoniazzi (Gower) (Lab)]

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.

Organ Donation (Deemed Consent) Bill

Peter Heaton-Jones Excerpts

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

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

The reason that I take a particular interest in this Bill has already been alluded to by many Members on both sides of the House, but I make no apology for rising once again to refer to the story involving my constituent.

Before doing so, may I join others across the House in wishing the hon. Member for Coventry North West (Mr Robinson) all the best in his recovery? In many ways, we would not be this far in the process were it not for him, and I pay tribute to the way he has led the Bill through the House. It has been my pleasure to speak at each stage of the Bill’s passage and to serve on the Bill Committee. I also thank the hon. Member for Barnsley Central (Dan Jarvis) for his kind words, which I will pass on to my constituents.

It is to them that I turn now and the story that has been alluded to but is worth retelling. If there is anything about this Bill that we need to keep in mind, it is that it is about people—it is about individuals, it is about saving lives and it is about the double-edged sword of a life being saved, but for that to happen, a life has to tragically be cut short. It is one such life that I wish to retell the story of.

On a Sunday morning last year on 30 July, there was a road traffic collision on the A361, otherwise known as the north Devon link road. It happened only about five minutes from my constituency home. Tragically, we had four fatalities on that short stretch of road in the space of a week. To go off slightly left-field, I am delighted to say that since then, because of persistent campaigning by many people, the Government have granted £83 million for major improvements on the road, mainly because of the safety concerns and the poor accident rate on that particular stretch.

Last summer, an accident took place involving two vehicles. Occupants of both were seriously injured. Before going any further, it is worth recognising that those who survived this accident are still living with its aftermath, and my thoughts remain with them nearly 18 months on. One of the cars involved in the accident was carrying members of the Ball family from Barnstaple. There was Keira Ball, her younger brother Brad and their mum Loanna. The paramedics, the emergency services and the NHS staff at the four different hospitals that the victims of this accident were taken to all did their best work, but sadly, young Keira Ball passed away two days later on the Tuesday afternoon. She was just nine years old.

Keira’s mother and brother were very seriously injured in the accident, and they were in hospital. They were not able to make decisions at this time, so the agonising decision came down solely to Keira’s father, Joe. He took the decision—and what a brave and courageous decision it was in these circumstances—that, in the midst of this tragedy, he wanted the life that had just been so cruelly taken away from his young daughter Keira to be given to somebody else, so he took the decision that Keira’s organs should be donated.

Following that brave decision, four people are alive today who otherwise almost certainly would not be. This is the power and the strength of organ donation, and this is why it is incredibly important that we get this Bill on to the statute book today: it is about these people. Keira donated her kidneys, her heart, her liver and her pancreas. One of her kidneys was given to a man in his 30s who had been on the waiting list for a transplant for two and a half years. The other kidney was given to a woman in her 50s, and she had been on the waiting list for nine and a half years. A young boy received Keira’s pancreas and liver.

Then we come on to Keira’s heart. It was given to a very brave and very sick 10-year-old boy, who has since very much become the figurehead of this campaign. I refer of course to Max Johnson. Max has been mentioned, quite rightly, so many times in this House and so many times during the passage of this Bill through Parliament. The media are calling it, quite rightly, Max’s law. I have a slight preference for it to be Max’s and Keira’s law, but it is actually the law for everyone who has found themselves in this situation—every parent, every relative or loved one, who has had to make the sort of agonising decision that Keira’s father made on that day—and for everyone who has benefited from the donation of an organ from a deceased person, as Max Johnson did.

It is Keira’s story; it is Max’s story; and it is a story of how a very brave and, I am sure, a very difficult decision to allow Keira’s organs to be donated has given life to other people who would otherwise almost certainly not be here today. Surely, of all of the arguments for supporting this Bill and for securing its swift passage on to the statute book, that is the strongest one—that this Bill is about saving lives. It is about giving people the gift of life just at the point when it might be taken away from them, and just at the point when it has been cruelly taken away from somebody else.

More organs are going to be available for donation as a result of this Bill, and that is crucial. We have heard some of the statistics from other Members, so I will not rehearse all of them, but I want to mention a couple of figures that I think are important. According to the latest NHS statistics, only 1% of people who die each year do so in what the NHS describes as “suitable circumstances” to allow their organs to be donated. I think we can probably guess, without going into too much detail, what lies behind that careful use of language. It means that only a very tiny proportion of people who die each year are not only suitable to have their organs donated, but have signed up voluntarily to the organ donation register.

If we cast our minds back to O-level or GCSE maths— depending on our ages—and the world of Venn diagrams, we can see that we need to have a lot of people in the middle bit where the circles intersect to ensure that enough organs will be donated to save lives. Because of the current way in which the law operates, that bit in the middle is not big enough: it does not have enough people in it. Bluntly, we do not currently have a system that allows for enough organs to be available to save enough lives. This Bill changes that, and that is why it is welcome.

[Neil O’Brien]

My hon. Friend is talking about the circles in a Venn diagram. I just make the point that many people would actually like to give their organs so that other people could live, but their relatives simply do not know that at present. This Bill is one way of solving that terrible problem.

[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.