Organ Donation (Deemed Consent) Bill

Lord Carlile of Berriew Excerpts

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

[Lord Carlile of Berriew (CB)]

My Lords, I too join in congratulating the noble Lord, Lord Hunt, and indeed the two colleagues in another place he mentioned, on bringing this Bill to Parliament. His characteristic modesty meant that he did not remind us of his enormous experience of the National Health Service, in the management context before he came to your Lordships’ House, as a member of the Government and as a Member of this House. That experience gives us some extra reassurance about the integrity of the Bill and what it proposes.

Debates such as this raise serious, and sometimes acute, ethical dilemmas. I think the ethical dilemmas in relation to the Bill are strongly affected by the fact that this issue is about saving life, not ending it. As your Lordships know from previous debates, I take a very different view on issues that affect the ending of life. I am happy to support the Bill, because it seems to make an entirely positive ethical contribution to the debates we have on such issues, perhaps uniquely, in your Lordships’ House.

I know that repetition rarely improves the quality of any argument. However, the support for the Bill, repeated from all parts of this House, and from all walks of life represented here, provides further important affirmation for it. We know that we are a somewhat unusual institution in this House; if a Martian were to walk in and look at the rules by which we come here, we would not pass the Martian test. Nevertheless, where else in the parliamentary world can we hold such ethical debates? Where else do we hear the kind of evidence that we are hearing in this debate? We very recently heard a wonderful speech from the noble Lord, Lord Elder, who told us of the heart transplant he had over 30 years ago. As we have seen today, it left him a very fit person: he has climbed more mountains than most of us have looked at. I hope he has also been able to enjoy some of the more traditional Scots remedies for exhaustion and other concerns.

We have also heard evidence from my noble friend Lady Finlay, who has spoken about the changes to the law in Wales and how effective they have proved. I think she gave some reassurance to the right reverend Prelate the Bishop of Carlisle about the increasing transplant figures in Wales.

I also look forward to hearing the contribution from my old friend the noble Baroness, Lady Randerson. She and I have known each other for many decades and I pay tribute to her determination. What she did in Wales on this issue was of great value, and I am sure she will provide very valuable evidence in a few minutes’ time.

That leads me to Wales. For many years I was an MP in a Welsh rural constituency and I am completely unsurprised that this system in the United Kingdom was first introduced in Wales. People in Wales tend to think more empirically than many in politics realise. Also, the devolution settlement in Wales, in which the noble Baroness, Lady Randerson, played a very important part, has made it much easier to bring to the statute book changes such as this in matters not reserved to the United Kingdom Parliament. Wales has been able, as has Scotland in some things, to be a trailblazer on this issue and has provided a great deal of evidence.

My belief is that the system in Wales has worked very well. My noble friend Lady Finlay described the advertising campaign, which means that everybody in Wales, unless they spend 24 hours a day asleep, knows about this system and it is discussed in families, as well as in more public forums in Wales. It has worked very well and has widespread popular support, as it will have in England.

I turn to the duties of the medical profession and return to something that the noble Lord, Lord Hunt, said at the beginning of his speech. He told us that he is fortunate enough to have just been appointed as a member of the General Medical Council. I was a lay member of the GMC for 10 years, albeit in its former incarnation as a much more parliamentary-style body than it is now. At the heart of the General Medical Council—I am sure this is true of the much smaller and very distinguished current council—are strong and heartfelt debates about ethical matters. The GMC translates those ethical decisions made by the council into guidance for doctors. If you look at its website, you come very quickly to the guidance currently given to doctors on after-death care and organ transplantation.

I say to the noble Lord, Lord Hunt, that one of the most useful things he can do in his first few weeks on the GMC is to persuade it that that guidance needs to be expanded somewhat so that the section relating to cadavers, parts of which can be used for transplantation, are much more explicit and so that the genuine concerns about that area are addressed. When doctors breach such guidance, of course it should be treated as serious professional misconduct which can bring the most condign remedies against them. However, for doctors to know where they are in these matters, it needs to be set out more explicitly.

The ethical responsibility is laid firmly on the regulator, the GMC, which passes it on to doctors. I hope that the General Medical Council will recognise that what I hope will be the passing of this Bill and the creation of a new system in England as well as in Wales means that it must be very vigilant about the behaviour of doctors in this area. There have been some horrendous cases—such as the Alder Hey case, which has not been mentioned so far in this debate—that have made one a little cautious about presuming that doctors can always be assumed to behave with superb ethical judgment. Sometimes they fail, and they need a stronger regulator to protect the public and themselves from such failures. I add that one of the principles that was often discussed when I was on the GMC was the responsibility of doctors to report other doctors who fall below appropriate standards. That failure, too, can be serious professional misconduct.

With those slight reservations, I support the Bill strongly, and look forward to England, once again, following Wales.

Organ Donation (Deemed Consent) Bill

Lord Carlile of Berriew Excerpts

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

[Lord McColl of Dulwich]

What is the limit? My apologies.

I return to my basic question and ask whether the Minister can confirm—[Interruption.] I am speaking to two amendments; 15 minutes each makes 30 minutes. Can the Minister confirm that the Government intend to define widely the word “information” in proposed new subsection (6B), introduced by Clause 1(4), so that if someone said, “I am convinced that my husband was unaware of the deemed consent law and would have opted out had he known, so you should not take the organs”, this would be regarded as meeting the definition of “information” in the Bill? If the answer is yes, I will happily withdraw the amendment and I will not die in a ditch for my second amendment, but it is entirely reasonable to suggest that the people of England deserve the same statutory assurances on advertising as the people of Wales. I beg to move.

[Lord Carlile of Berriew (CB)]

My Lords, it is always a pleasure to follow the noble Lord, Lord McColl. He has great distinction as a surgeon; I recognise, as I am sure other noble Lords do, both that distinction and the great care he took, perhaps with a little liberality with the rules of the House, in presenting his arguments.

I will be brief. I think that I am one of six former Welsh Members of another place in the House today. At least some of us, perhaps most of those present, were reasonably or very enthusiastic supporters of devolution to Wales. One reason why the law on organ donation has changed in Wales is because devolution has allowed for a much shallower pyramid in the Welsh legislative process. In December 2015, the Welsh Government and the Welsh Assembly changed the system to one of presumed consent. It has worked very well. For me, as a Welsh-born former MP for Wales, it is a matter of great pride to be able to say to your Lordships’ House, on this occasion at least, “Look up to what has happened in Wales”. Indeed, the noble Baroness, Lady Randerson, as a former Welsh Minister, carries some credit for what occurred there.

I offer a few short propositions. First, there is no evidence of sound ethical principles being undermined as a result of the new Welsh legislation. Believe it or not, medical ethics in Wales are at least as good as in England, and patient satisfaction levels are at least as high, if not higher. Secondly, there is clear evidence of a better understanding of organ donation issues among families in Wales. The figures speak for themselves: on 16 November 2018, the Welsh Government announced that the rate of family consent in Wales is now at its highest ever—80.5%. That compares with 66.2% in England, 63.6% in Scotland and 66.7% in Northern Ireland. I suggest that these figures show that understanding of the new organ donation arrangements in Wales among Welsh families and the Welsh public is very high. There is no evidence of any irresponsibility, either legislatively or in the health service, in ensuring that organs are available in Wales.

Finally, I have no particular objection to the ambition of the noble Lord, Lord McColl, that public information levels about the new process of deemed consent for organ donation should be the highest possible. That has happened in Wales, which is why families there understand these issues so much better, as borne out by the figures I just gave. Indeed, can the Minister—who is a she, not a he, by the way—confirm the Government’s ambition for public information levels to be at least as high in England and wherever else the Act will apply, which is a matter for later discussion, as in Wales? The Government would be crazy not to undertake a publicity campaign to explain properly something quite fundamental that needs to be explained to the public. Can she also confirm that patients in other parts of the United Kingdom to which this excellent Bill applies will not be at any disadvantage?

[Baroness Randerson (LD)]

My Lords, I want to make it clear that I oppose firmly Amendment 1. I believe that it fatally undermines the concept of deemed consent and ignores the processes that will be put in place if and when the Bill becomes law.

In some circumstances when people die, medical practitioners have a short window of opportunity to deal with organ donation, and it is simply impossible to get permission from the people who were near and dear to the deceased. Very sadly, some people also die having no one in that category. As it is written, the amendment undermines the principle. If the intention is to write into law that, where possible, family and friends must be consulted about the wishes of the deceased and their own wishes, that would be a different matter. However, as I read it, that is not how Amendment 1 would work.

The noble Lord, Lord Carlile, has been a brief but powerful advocate of the Welsh system. I want to say one or two other things about it. Because we were pioneers on this within the UK, it was very much a matter of taking a belt and braces approach—take no risks. There were years—and I mean years—of public consultation on this issue and then years were spent preparing the resources to make sure that, when it was implemented, it would be done properly. That is why it took over five years from inception to the time when the system was put into place.

The Government need to publicise and inform. I support the noble Lord’s intention in Amendment 3, and I hope the Minister can confirm that the Government would consider incorporating this provision into the Bill—perhaps not in its current wording but in its intention. There would need to be a wide and repeated publicity campaign for the reasons that the noble Lord outlined.

The process of deemed consent will not reduce the pool of donors. Look around the world for the evidence. The top 10 countries in the world for deceased donors per million of population are Spain, Portugal, Belgium, Croatia, the USA, Italy, France, the Czech Republic, Austria and Belarus. Only the USA has an opt-in system; nine out of the 10 do not—there is the evidence. In those countries, in so far as I have been able to look back historically, there has been a great increase in the number of donors following the introduction of an opt-out system. I will not repeat the statistics that the noble Lord, Lord Carlile, has given the House, but the history in Wales is clear. Since 2015, the numbers have increased considerably year on year. Although we in Wales had been lagging behind the rest of the UK in our donor numbers, we are now well ahead.

The rate in Wales of those who choose to opt out is currently 6%. When we held our public consultation, we believed that the rate could be as high as 19%. It is a triumph of the publicity that people have understood it, but an important thread in that publicity was the fact that people were encouraged again and again to talk to their families and make their wishes known, so that due sensitivity could be paid to the wishes of families.

The British Heart Foundation, Kidney Care UK, the BMA and dozens of other organisations deal with this situation day in and day out. They all support this Bill, and I urge noble Lords to do so as well in due course.