Organ Donation (Deemed Consent) Bill

Lord Hunt of Kings Heath Excerpts

2nd reading (Hansard): House of Lords
Friday 23rd November 2018 Lords Chamber

Moved by

[Lord Hunt of Kings Heath]

That the Bill be now read a second time.

[Lord Hunt of Kings Heath (Lab)]

My Lords, I should first like to declare an interest regarding my forthcoming appointment to be a member of the General Medical Council.

[Noble Lords]

Oh!

[Lord Hunt of Kings Heath]

It is a good start, my Lords—just have to keep going.

Every year, NHS Blood and Transplant holds a number of very moving ceremonies with donor families. These occasions are wonderful celebrations of the gift of a loved one’s organ, to give life to others. Last year in England, there were over 1,300 deceased organ donors and over 3,300 transplants. That is a wonderful achievement but we could do so much more. My Bill aims to increase the number of organ donations while maintaining strong family involvement in the decision which, I stress, will remain a remarkably altruistic act of giving. Nothing in this Bill will change the concept of giving.

It is thanks to the tireless work of a number of people to promote the Bill, especially my honourable friends Geoffrey Robinson and Dan Jarvis, who secured unprecedented cross-party support, that we are today a step closer to putting it on to the statute book. I extend my thanks to the Prime Minister and my right honourable friend the leader of the Opposition, and to other leaders of the political parties in Westminster, for their continuous support for the Bill, and to the Daily Mirror, for its unflagging and enthusiastic support. I also pay tribute to the noble Baroness, Lady Randerson, who took forward subsequent legislation in Wales to allow organs and tissues under deemed consent to be used in transplants in the rest of the UK countries. I am hoping that she may inform the House of the latest progress in Wales regarding the legislative changes that occurred there.

The Bill is often referred to as Max’s and Keira’s Bill, in honour of a recipient, 10 year-old Max Johnson, who recently received a “Pride of Britain” award from the Prime Minister for his immense bravery while waiting for a heart transplant, and the donor, Keira Ball, who tragically died in a road accident. I pay tribute to both of them.

There is currently a record 20 million people in England recorded on the organ donor register, but 400 people died last year while waiting for transplants, and a further 755 people were removed from the transplant list as they were just too ill to receive treatment and a transplant. This is partly down to the fact that only 1% of people die in circumstances where their organs are suitable for donation. It is also partly because members of the family are often not aware of their loved one’s wishes, and sometimes find it safer to say no. Our ambition is to achieve an 80% consent rate in England. This will not happen overnight; the experience in Wales is clear in that respect. However, if we reach that target and 80% of families allow donation to go ahead, there will be 280 donors a year, which could lead to as many as 700 more transplants a year. The Bill, if enacted, will be a significant step forward. Starting from the basis of presumed consent, the family would still be fully involved in the decision. The aim essentially is to spark in England the positive culture change that many nations in Europe have experienced, following their change to an opt-out position. It will mean more people being inspired to have that incredibly important conversation with their loved ones, knowing that the life of a person waiting for a transplant could be saved.

In countries where deemed consent systems are in place, there are generally higher numbers of organ donations when supplemented with wider measures. I will return to that later. It is particularly pleasing to note that Wales has now reached a consent rate of 70%, and the first few months of 2018 showed that rising to 73%.

I would like to give a summary of the Bill, which consists of three clauses. First, however, I would like to clarify a few things about its scope. The proposed consent system only covers deceased donations—it does not apply to living donations or donations for research purposes. The Bill would make changes to the Human Tissue Act 2004, which covers England, Wales and Northern Ireland, but it would make the changes to consent in England only. The system of deemed consent in England will be consistent with the Welsh opt-out system. Transplants which currently take place under the current system—heart, lung, kidney, liver, pancreas, bowel and tissues such as corneas, skin, bones and tendons—will fall under the deemed consent provisions. Excluded from those provisions will be the less common organs and tissues, often called novel transplants. These will still require express consent.

Following consultation, regulations will be set out by the Secretary of State in an affirmative statutory instrument, which will specify which organs or tissues will be excluded from deemed consent. A Written Ministerial Statement will be part of the process every time the regulations are amended. It is important we have an approach consistent with Wales and Scotland on these issues to make sure that nurses and clinicians working across borders follow the same approach.

There are other important safeguards in the Bill. First, all children below 18 will be excluded from deemed consent, although they will still be able to register as now to donate their organs. People who are not ordinarily resident in England for at least 12 months immediately before their death will be exempt from the new arrangements. In practice, this means that people living in England in the short term will not be affected by changes in the consent system. The Bill also provides a safeguard for people who lack the capacity to understand the concept of deemed consent for a significant period before their death. The decision on whether a person lacks capacity will continue to be established in accordance with the Mental Capacity Act 2005.

Very importantly, the Bill sets out the role of the deceased family and friends under the proposed arrangements. It makes it clear that they may provide information suggesting the deceased would not have consented, to prevent donation proceeding. This is very important. I reassure noble Lords that the family of the deceased will continue to be involved in discussions with specialist nurses about their loved one’s wishes and how best to support those wishes, also taking account of faith and cultural considerations. Clinicians will never proceed if the family object strongly. I know the Government have worked hard with different faiths to ensure that they are comfortable with how deemed consent will work. As Kidney Care UK put it, changes in the law on consent do not change the importance of people talking to their families about their wishes in respect of organ donation.

To support the smooth implementation of the provisions in the Bill, it places a duty on the Human Tissue Authority, the regulator, to update its code of practice and issue practical guidance for professionals. The new codes will be consolidated in a single code, to be consulted on and laid in Parliament. The Bill will also allow all organs removed in England for transplantation purposes to continue to be used across the UK, to save as many people in need as possible.

Clause 3 sets out that the Bill extends to England, Wales and Northern Ireland as it will be amending the Human Tissue Act 2004, which extends to those countries. It sets out that Clauses 1 and 2 will come into force on the day or days that the Secretary of State appoints in regulations made by statutory instrument, so in effect the Secretary of State will have to set out what the commencement date is for deemed consent in England. Clause 3 automatically comes into force on the day that the Act is passed.

I recognise that a change to the consent system is not a panacea. The Bill needs to be accompanied by an assurance that capacity in the NHS in terms of transplant teams, intensive beds and specialist nurses will be sufficient. I particularly mention the need for good-quality training and greater numbers of specialist nurses. They are remarkable people who have the extremely difficult role of initiating discussions about potential organ donations with families at such a sensitive time. The Spanish experience is that investment in specialist nurses is one of the major factors in their success and the transformation that has occurred in Spain.

It will be essential to have a strong communications strategy to ensure that the public are fully aware of the changes, and I look forward to the Minister’s response on that. I would also say—and I think this is the Welsh experience—that it is important to have follow-up campaigns because clearly, the cultural change we want to see will not happen overnight.

I end by saying that I am clear that the gift of giving will be as strong a part of organ donation as ever. I thought the Minister in the other place, Jackie Doyle-Price, put it well when the Bill went through its Commons stages:

“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 … 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”.—[Official Report, Commons, Organ Donation (Deemed Consent) Bill Committee, 12/09/18; cols. 11-12.]


I think that puts it very well. I am confident that, if enacted, the Bill will play a significant role in changing the culture towards organ donation in England and help hundreds of lives in the years to come. I beg to move.

--- Later in debate ---

[Lord Hunt of Kings Heath]

My Lords, I thank the Minister for that very authoritative response and to echo what he said about the time pressure that we face. I also thank all noble Lords who have taken part in what the noble Lord, Lord Carlile, was surely right to describe as a very moving but also ethically and intellectually based debate. Where else indeed could we do it? I am also grateful to the noble Lord for his advice on the GMC. I realise I am not going to be short of advice, but I am in that glorious honeymoon period where I am not actually responsible yet. On 1 January, I might hide round some corners if I see the noble Lord coming.

This has been a very moving debate. Essentially, it is a celebration of the gift of donations to help others. I thought that my noble friend Lord Elder put so aptly what this really means to so many people in our country. It is also interesting that the noble Lords, Lord Patel and Lord Lansley, said that they had changed their minds. I am in the same camp. I was responsible for organ donation between 1999 and 2003. I also had to deal with the aftermath of the Alder Hey debacle and I well remember some parents having to go through three or even four burial ceremonies as more organs and tissues of their children were found. I have therefore always taken a very cautious approach to this issue but, like the noble Lords, Lord Lansley and Lord Patel, I have become convinced that it is time to make a change. The evidence for presumed consent is stronger, I think, and I am very grateful to the noble Baroness, Lady Randerson, for what she had to say. Public opinion has changed, and the infrastructure has improved immeasurably. We should acknowledge that in relation to capacity, transplant teams and specialist nurses, there have been very significant improvements. I welcome what the Minister said about future developments, particularly the increase in the number of these key specialist nurses.

All noble Lords—the noble Lord, Lord Ribeiro, the noble Baronesses, Lady Finlay and Lady Chisholm, and my noble friend Lady Crawley—have emphasised that alongside the change, we need to have a public campaign. The noble Baroness, Lady Brady, said something which I thought was really important: no one should be surprised by the change. I think we should set that as our aim in the campaign. This is not a waste of money; this will have a big impact to the good on the public.

I echo what the noble Lords, Lord Patel and Lord Ribeiro, said about the shortage of donors from black and minority ethnic communities. I welcome the campaign this summer; we just need to build on it. I also welcome the discussions with faith leaders and the assurances given by Ministers. I echo and endorse those assurances and the contents of the letter that the Minister referred to.

The noble Lord, Lord McColl, and the right reverend Prelate the Bishop of Carlisle expressed some concerns that this Bill will have the opposite effect to its intended one. The noble Lord, Lord McColl, has grave doubts about the figures used for outcomes. Clearly, this is a significant step change; I acknowledge that. The right reverend Prelate thinks the balance between individual families and the state will be disturbed by it. It is a change, of course, but I believe that, with the safeguards, there is still balance in the provisions, and the change is being made in line with public opinion and the improvements in the infrastructure.

On organ trafficking, I agree with the noble Baroness, Lady Finlay, but I do not think this Bill is the right place to debate it. I pay tribute to the noble Baroness, Lady Deech, whose distinguished work in the area of human tissues is unequalled. I agree with her about the need to maintain trust. She referred to the Nuffield Council and its comments about how to make this work ethically; I agree with the points about easily accessible information, families being at the heart of decision-making and the network of specialist nurses. We heard a really reassuring view from the Minister about how that will be taken forward; clearly, we need to hold the Government to account on that.

As my noble friend Lord Elder said, this Bill is not a panacea. It will not, by itself, lead to a large increase in donations. However, it is a step change. It will help to raise awareness, encourage family conversations and change the culture, and that will lead to a higher consent rate in England. In that way, hundreds of lives will be saved. I am convinced this is the right way to go.

Bill read a second time and committed to a Committee of the Whole House.

Organ Donation (Deemed Consent) Bill

Lord Hunt of Kings Heath Excerpts

Committee: 1st sitting (Hansard): House of Lords
Friday 1st February 2019 Lords Chamber

[Lord Hunt of Kings Heath (Lab)]

I am very grateful to the Minister and, in particular, the noble Lord, Lord McColl, for raising these important issues. He asked for reassurance, and I hope that in a moment he will be able to say that he has received it.

I shall make four quick points. First, I agree with the noble Lord that in the relationship between the patient and the doctor, trust is critical. He mentioned Alder Hey. I was a Minister who had to deal with the Alder Hey situation. It was very different. There was a rogue pathologist, unsupervised by the NHS or the University of Liverpool. Many parents affected had the tragedy of three times having to bury parts of their child’s body. That situation has left an indelible mark on anyone who had anything to do with it. But what happened at Alder Hey is very different from transplant services. People in those services are very responsible and operate under a code of practice and the law. While the noble Lord is right to raise that situation—and some of the families who were affected are watching the debate in your Lordships’ House today—there is a difference.

Secondly, the Welsh experience is instructive in its success in increasing the rate of donation. As the noble Lord, Lord O’Shaughnessy, said, it allows people to opt out, but the number of those who do so is much smaller than the noble Baroness, Lady Randerson, and her colleagues in Wales thought it would be. That shows that the system is working.

Thirdly, at the heart of the Bill we are encouraging a change in culture, so that we as individuals talk to our families about our intentions. This is why having the card and signing the register are so important, as they are a clear indication to our families that we wish to donate our organs. Nothing in the Bill will move away from the important discussion with the family and from families being listened to in the way that the Minister said.

Finally, on the education campaign, I do not wish away £18 million. It is a good sum to start with, but we will have to see how it goes. If it is apparent that we need more campaigning, I will be the first to knock on the Government’s door. We should also remember what the noble Lord, Lord Lansley, said: it is not just the campaign. We need to make sure that our transplant service will be able to meet the increase in donations that we expect to see. That means, first, that we make sure that we have enough of the crucial specialist nurses, who do a fantastic job. We also need to make sure that the transplant service will be able to respond to what I hope will be an increase in the number of donations.

I hope that the noble Lord feels he has received the reassurance he rightly asked for.

--- Later in debate ---

Given the current duty on NHS Blood and Transplant to report annually, which goes beyond the commitment set out in this amendment, and given the Government’s plans to do a formal evaluation after the new arrangements are up and running—which we fully recognise is good practice in policy-making—I hope that my noble friend feels reassured and will withdraw his amendment.

[Lord Hunt of Kings Heath]

My Lords, I have nothing to add to what the Minister has said, save that robust assessment will be important not only after one year but on a number of occasions. It will be very important to pick up the issue, raised by the noble Lord, Lord McColl, of whether transplant services are keeping pace with the hoped-for increase in donations.

[Lord McColl of Dulwich]

My Lords, I would like to thank everyone who has taken part in this debate. I am very reassured indeed by what has been said. It might perhaps be appropriate to repeat something that I said at Second Reading, in view of all the commotion and anger about Europe. When I was transplanting kidneys, the French kidneys were always the best. I say that because, when I connected the artery and the vein and took off the clamps, the urethra would immediately start peeing on the table, which was amazing. None of the other kidneys did this. I said, “What is it about these French kidneys?” The reply was, “Oh, it’s the wine”. I beg leave to withdraw the amendment.

--- Later in debate ---

[Baroness Manzoor]

My Lords, I thank the noble Lord, Lord Morrow, for raising the issue of territorial extent and its application in this Bill. I clarify that that the Bill does not change the rules of consent in Northern Ireland and introduces deemed consent only in England. The reason Northern Ireland is included in the extent is because the Bill amends an existing piece of legislation, the Human Tissue Act 2004, which extends to England, Wales and Northern Ireland. While the Bill has been drafted to have a matching extent to that Act, which is the recommended approach when an existing Act is amended, we are changing the law to introduce deemed consent in England only. Deemed consent will not apply to Northern Ireland.

On the second part of the noble Lord’s amendment, the Bill as drafted ensures that organs removed in England under deemed consent can still be stored and used in Northern Ireland as now, even if Northern Ireland does not have deemed consent. This is why Northern Ireland is included in Clause 2(2) and (3). However, for such a provision to have effect in Northern Ireland, there will be a need for a legislative consent Motion from Northern Ireland.

I hope this reassures the noble Lord that we have not undermined policy in Northern Ireland in any way, and reassures the Committee that this amendment is not necessary. I hope the noble Lord will withdraw his amendment.

[Lord Hunt of Kings Heath]

My Lords, the noble Lord has asked me to confirm the view of the Minister, and I so do.

[Lord Morrow]

My Lords, I thank the Minister and the noble Lord, Lord Hunt. To put it very succinctly, I am reassured. I beg leave to withdraw the amendment.

Organ Donation (Deemed Consent) Bill

Lord Hunt of Kings Heath Excerpts

3rd reading (Hansard): House of Lords
Tuesday 26th February 2019 Lords Chamber

Moved by

[Lord Hunt of Kings Heath]

That the Bill do now pass.

[Lord Hunt of Kings Heath (Lab)]

My Lords, I should like briefly to express my thanks to the Prime Minister and my right honourable friend the leader of the Opposition, and indeed the leaders of many of the other parties, for their very strong support for this Bill.

Huge credit is owed to my honourable friends Geoffrey Robinson and Dan Jarvis and a cross-group of MPs who helped to see the Bill through the other place. I mention in particular the pioneering work of the late and very much missed Paul Flynn, who laid the early foundations and whose last speech in the other place was in support of the Bill.

In this House, the Minister and her predecessor, the noble Lord, Lord O’Shaughnessy, deserve great credit for their support, and I thank many noble Lords from all round the House, including my noble friend Lady Thornton, for their stalwart support in taking the Bill through. I have benefited from the valuable advice of Marina Pappa in the Bill team in the Minister’s department, the team led by John Forsythe at NHS Blood and Transplant, and Paul Millar in Geoffrey Robinson’s office.

The long and enthusiastic support of Mirror Group Newspapers has also been invaluable, as has that of charities such as Kidney Care UK and the British Heart Foundation, which work tirelessly every day to support patients and their families.

This Bill has been referred to often as Max and Keira’s Bill in honour of a recipient, 10 year-old Max Johnson, who was recognised by the Prime Minister for his immense bravery while waiting for a heart transplant, and the donor, Keira Ball, who tragically died in a road accident. I pay tribute to both of them.

I am convinced that the passing of this Bill will lead to many more organ donations and lives saved while retaining the involvement of the family in what will remain a remarkably altruistic act of giving. I beg to move.

Bill passed.