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.