Organ Donation (Deemed Consent) Bill

Baroness Randerson Excerpts

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

[Baroness Randerson (LD)]

My Lords, I thank the noble Lord, Lord Hunt of Kings Heath, for bringing this Bill forward, and for his excellent speech. We have heard moving contributions from across the House this morning. I want to thank the Government for their indication of support for the Bill. I also thank the noble Lords who chose to say kind words about me.

Of course, the important thing is that the greatest tributes must be paid to the donors and their families. There is, however, rare cross-party unity on this issue. That, you may think, is not surprising, because 80% of people say they would consider donation, but only 37% are on the donor register. Importantly, the percentage on the register from ethnic minority groups is a lot lower than that, and yet some of these groups face a greater than average likelihood of developing some of the illnesses that lead to the need for a transplant.

My party has supported this policy since 2002. At a personal level, I believe passionately that a system of presumed consent, a soft opt-out system, is the answer to addressing the gap between the number of donated organs and the number that we really need to save as many lives as possible. As the noble Lord, Lord Hunt of Kings Heath, indicated, I have some experience of this issue. As an Assembly Member in Wales, I was a member of the Health Committee. I was also spokesperson for my party on health issues in 2008 when the Kidney Wales Foundation and the BMA, together with other health groups, started to campaign for a system of presumed consent. I should declare that I was a trustee of the Kidney Wales Foundation from 2010 to 2012.

There was a well-co-ordinated campaign which had an impact on civic debate in Wales and on politicians in the Assembly. It led to the Health Committee deciding to do an inquiry. As part of that, we looked at evidence from across the world. We have heard a lot of statistics today but if you look at the evidence from across the world you will see that rates of donation vary considerably. But one thing you can draw out of it is that in countries with presumed consent, the rates tend to be higher than in countries without. When presumed consent is introduced, the number of donations increases over time as a percentage of the population.

As part of our inquiry, we also visited Madrid. Spain has been mentioned several times in this debate. There, we learned how soft consent works. We also learned that, as well as the legislation, you need the infrastructure to develop the system properly. You need improved training for staff as well as the best equipment. Meeting the clinicians, nurses and counsellors involved in the process in Spain had a huge impact and made us aware of the issues that we needed to tackle. In due course, after taking evidence from many groups, including patients and health campaigners, the Health Committee in the Assembly produced a report, which in fact at that point did not recommend a move to a soft opt-out system because some members were concerned that it might not be within the powers of the Assembly. These were early days for the Assembly and it was feeling its way.

Therefore, along with some other Assembly Members, we produced a minority report supporting a change to a soft opt-out system. Fortunately, the Health Minister at the time, Edwina Hart, was a lot bolder than some Assembly Members and decided to support the change, and she did excellent work in making it happen. It took a long time and years of consultation to get it right. The new Human Transplantation (Wales) Act was passed in 2013 but, even then, preparations took until December 2015, when the new system was eventually introduced.

I have some observations to make about that process. At the time, I was surprised at the extent to which the establishment—some in government and even some health organisations involved—closed ranks against the idea that the new Welsh Assembly could take such a radical path. It is a measure of how the debate has moved on—and I strongly welcome that—so that the Government now welcome it. In 2008, the Government’s Organ Donation Task Force, in its second report, unanimously opposed a change in the law. The UK Government have now accepted that the Welsh Government did indeed have competence to change the law. That happened during the coalition Government, when I was in the Wales Office, and it was not challenged.

In our original debates we were bolstered by the extent of the support from many faith communities. There were thoughtful contributions to the debate and overall support from faith communities. I very much hope that the right reverend Prelate the Bishop of Carlisle will study the Welsh experience in detail and look at exactly how much care was taken on the key and very important issues that he raised. The noble Lord, Lord Carlile of Berriew, is right that devolution in Wales made this a manageable initiative, with Wales being the first part of the UK to adopt the system. The noble Baroness, Lady Finlay, was right to emphasise the extensive public information campaign, and there has been no backlash, as some predicted. In addition, I emphasise that the public information campaign came not just from the Government but from third sector organisations, so it involved not just public money.

The fundamental objection is the fear of coercion. That has to be addressed through thorough information and careful explanation. It is called a soft opt-out system for a reason. By convention in this country we have always put the wishes of the deceased and their next of kin at the forefront so, whatever the legislation in this situation, it is important that that care over the wishes of the deceased and their relatives continues. You cannot rely on the law alone; you need a big investment in intensive treatment units and many more trained nurse counsellors. The conversation prior to or at the point of death is difficult but crucial. We cannot expect clinicians to do it as an adjunct to their work. Their mission is to save lives. It is very difficult for clinicians to be working to save a life at the same time as talking to the family about the point after death.

Difficult conversations need to be had as well in preparation in advance of death, where that is possible. Along with this approach to individual cases, you need, as several people have mentioned, a big national conversation, a campaign to encourage people to tell their loved ones what they want to happen to their body after death. I do not know if noble Lords have had those conversations. My son came out and told me that he wanted to donate his organs but I found it very much more difficult emotionally to raise that issue with my daughter, and it was the public information campaign in Wales that made me feel that I had a duty to discuss these issues within the family. So the open conversation is really important.

Evidence from Wales is also there to say that people also talk about not allowing cardiopulmonary resuscitation, which is often something on which there is confusion. Our system in Wales is being widely commended within the medical world, and we have evidence of overwhelming change in that too.

I want to spend a moment or two on the outcome because it is difficult to keep up when the situation is changing so fast. The Wales studies, prior to legislation, allowed for a 19% opt-out rate. In fact, as we have heard, it has been very much lower at 6%. At the same time consent rates in Wales have increased from 58% in 2015 to 72% in 2017, compared with 65% in England. Specifically, consent rates for brain-dead donors are now 89%, and for donors after circulatory death, donation rates have increased from 53% in 2015 to 68% in 2018.

The donation of eyes is always a particularly sensitive issue, and there is worldwide evidence to show lower rates of donation on those. The deficit between the number of corneas being donated and the number of transplants needed is increasing rapidly; it has gone up by 157% in five years. However, by increasing the donor pool across the UK we should be able in the long term to address that shortage.

Overall Wales now has the highest rate of consent for organ donation in the UK. There is also a hidden factor here that I draw to noble Lords’ attention: organs cross borders. There is anecdotal evidence in Wales that additional donations have helped in England, Scotland and Northern Ireland, and indeed beyond, in the EU, to produce better outcomes. The number of organ donors has gone up, from 60 in 2015 to 74 last year, and 44 in the first six months of this year. Wales has a population of only 3 million, so the numbers are necessarily small.

It takes time to build the new system but I am delighted that it looks now that, thanks to the change in Wales, things have improved there. I am very pleased indeed that it now looks as though, thanks to this Bill, England has the chance of following in the footsteps of Wales. I urge those who will, I hope, have the responsibility of introducing a new system to look carefully at the procedures and experience in Wales. As several of your Lordships have said, deemed consent is not the whole answer, but it is the golden key to unlock the door. This is an excellent Bill because, most importantly, it retains the key principle that organ donation is a gift, and it must remain freely given.

Organ Donation (Deemed Consent) Bill

Baroness Randerson Excerpts

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

[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.

[Lord O’Shaughnessy (Con)]

My Lords, I want to make a brief contribution because I was in my noble friend’s position at the Second Reading of this Bill. It is important to reflect on the theme of the amendments tabled by my noble friend Lord McColl: they are about trust. He is of course absolutely right that in the course of any changes we make in the future and whatever system we create, we must maintain the trust of British citizens, patients and their families. I agree completely with him in that intention. That is why, as the noble Baroness, Lady Randerson, has just said, I support the intention of having a good campaign, although I do not think that it is the sort of thing which ought to be put into legislation, for the obvious reasons. Indeed, as the noble Lord, Lord Carlile, pointed out, it would be barmy for any Government to undertake this kind of policy change and not pursue that, because to do so would be to fatally undermine the trust that already exists. At the moment, we have a very strong system in England which we intend will only get better.

I am sure my noble friend the Minister will confirm that it has always been our intention to provide a thoroughgoing, lengthy and extensive campaign for every new generation coming through in support of the idea of deemed consent. This policy has been supported by successive Prime Ministers: Gordon Brown supported it, David Cameron had an interest in it and Theresa May has made it a personal commitment. Given the benefits that such an approach yields, as has been demonstrated in Wales and elsewhere, it is inconceivable that any Government would not put the necessary resources into it. Indeed, we have an excellent record on public health campaigns and information campaigns in this country. The intention behind Amendment 3 is right, although I do not think that it is appropriate to put it into primary legislation.

--- Later in debate ---

[Baroness Manzoor]

My Lords, I will come on to donor cards. I hope that with the enactment of the Bill more people will be able to take proactive action to record their decision on organ and tissue donation and discuss it with their family.

It is fully recognised by the Government that the new system must be well publicised for the changes to have the greatest effect. As part of developing the code of practice, the Human Tissue Authority will propose what information the specialist nurse should consider. The principle, however, will be that such information represents the wishes of the deceased rather than those of the family.

Without wanting to prejudge discussions with the stakeholders in the planned public consultation, we are aware that organ donation in some cases may be against someone’s culture, faith or belief, as my noble friend Lord McColl pointed out. It is for this reason that I confirm again that the Government will launch a 12-month communications campaign after the Bill receives Royal Assent. We are working with NHS Blood and Transplant on plans to reach out to as many people as possible. Plans are already in train to write to each household in England; to use different advertising channels, including TV, radio and social media; to promote the campaign in health settings; and, through partners, to engage the media in work to ensure that we reach hard-to-engage groups so that as many people as possible in England are aware of the changes.

My noble friend also raised the question of foreign students. The regulator will work with the Universities and Colleges Admissions Service to raise awareness with them.

We are also keen to work and align our message with the many charities that are already doing great work to promote organ and tissue donation. Key stakeholders are now part of the NHS Blood and Transplant communications advisory group and they are considering how best to do this.

[Baroness Randerson]

The Minister has given a list of organisations that she will be working with but I have not heard the word “schools”. The noble Lord made a good point about young people coming up to the age of 18 needing to be fully informed. Schools are an effective way of passing on information about basic rights in our society.

[Baroness Manzoor]

I agree. Schools and universities will be included. It is important that the message is carried in those settings and institutions. I have already said that NHSBT will work closely with universities and other organisations to ensure that key messages are available.

On donor cards and short-circuiting the family, there is no name on the card but it is a good starting point to knowing the wishes of the deceased. Efforts will be made to track down the family to determine lifestyle history.