Organ Donation (Deemed Consent) Bill

Lord O'Shaughnessy Excerpts

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

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord O’Shaughnessy) (Con)]

My Lords, I join the noble Baroness, Lady Thornton, and the noble Lord, Lord Carlile of Berriew, in congratulating noble Lords on a superlative debate on a vital and highly sensitive issue. It is a credit to this House. I thank the noble Lord, Lord Hunt, for bringing the Bill to the House and presenting it in such an authoritative way. I also thank MPs in the other place, Geoffrey Robinson and Dan Jarvis, both for bringing the Bill forward and for their collaborative work with the Government on it. I thank them and everybody else who has worked so hard to get the Bill this far for their ongoing dedication.

As has been remarked, the passing of the Bill would mark a significant step towards transforming and saving the lives of hundreds, if not thousands, of people in the UK waiting for a life-saving transplant. As my noble friend Lord McColl said, what is at stake could hardly be more important. While we have made great strides in recent years, we can and must do better, as we were reminded by the moving story of the noble Lord, Lord Elder.

The Government are committed to the Bill. In October 2017, the Prime Minister committed to changing the current system of consent to shift the balance of presumption in favour of organ and tissue donation in England. Her position gained support from leaders of all parties and Members in both Houses, for which I am truly grateful. As I said, the Government welcome the Bill and support it wholeheartedly as an additional and necessary measure to address the tragic death rates due to the lack of organs and tissues available for donation. As the noble Lord, Lord Oates, reminded us, public support for higher donation rates is already there, as it is among critical organisations in the healthcare family. Our job as legislators is to put in place a system that responds to public demand, but in an ethical, practical and effective way. I think that the Bill succeeds in this regard.

As has been said, the passing of this legislation is neither a silver bullet nor a magic wand, but I believe that it will play a significant role in changing the culture towards organ and tissue donation in England. Like the noble Lord, Lord Hunt, I pay tribute to Max Johnson and the family of Keira Ball. Max, whose plight captured the hearts and minds of the public and whose bravery has been remarked upon, was fortunate enough to receive the gift of life from nine year-old Keira Ball, whose family took the extraordinary and generous decision to transform and save the lives of others by making her organs and tissues available to those in need. We should never forget the importance of such gifts. I want to be absolutely clear that under the new approach set out in the Bill, organ donation will be a most precious and joy-giving gift, to use the phrase of the noble Baroness, Lady Crawley.

NHS Blood and Transplant does tremendous work in recognising the generosity of donor families in various ways, including by awarding them the Order of St John. I reassure all noble Lords that celebrating donation will continue; it is an important aspect of making organ donation part of our culture. Enough gratitude cannot be given to families who, at a time of such grief, take the big-hearted decision to transform or save the lives of others. I assure the right reverend Prelate the Bishop of Carlisle that, as I said, organ donation will always be a gift; that will remain the case. The decision of donation will remain: everyone will continue to be able to opt in or opt out of donation. To save more lives, we will still need more people to take the positive step of registering their decision to donate, so that if they die in circumstances where donation is a possibility, their organs and tissues can be made available to help those so desperately in need and the family can support that positive decision.

I should like to reflect on some important changes made to the Bill in the House of Commons where, as has been remarked, there was broad cross-party support. A set of amendments were made in the other place, including a power to remove novel forms of transplantation, such as faces and limbs, from the scope of the Bill. On this point, I want again to reassure noble Lords that the Bill will not change the list of organs and tissues currently considered standard donation. These are heart, lung, kidney, liver, pancreas, bowel, and tissues such as corneas, skin, bone and tendons. To ensure consistency with Wales and the proposal in Scotland, I confirm that for the rarer, more unusual types of transplants, known as novel transplants, as we will set out in regulations, there will continue to be a requirement for express consent to be given for donation to proceed.

If, following advice from medical experts and NHS Blood and Transplant, there is a need to update the list of novel transplants, we will consult on the relevant regulations, which will be laid under the affirmative procedure so that there will be full parliamentary scrutiny. On the point made by the noble Lord, Lord Hunt, I can go further today and confirm that the Government will lay a Written Ministerial Statement after any changes are passed by Parliament to give absolute clarity on how regulations have been updated and what they mean in practice for deemed consent.

We all know that this change in the law is important, but it is not the whole story. Making sure that the public are aware of the change and of the importance of organ donation is the critical change. The consent system needs to be accompanied by a comprehensive public awareness campaign to give the public time to understand the changes, have a discussion with their family and make an informed decision about whether they wish to donate their organs and tissues. The Government will develop easy-to-understand material, kept up to date with information about the options, what organs and tissues can be donated and other details.

I take seriously the points made by the noble Baroness, Lady Thornton, the noble Lord, Lord Patel, and my noble friend Lord Ribeiro about the importance of this campaign reaching the BAME community. A campaign on that front started in July but clearly, we need to do much more and have much greater opting in and awareness in these communities. We have had some success on this front with blood donation; we need the same kind of success in these communities with organs and tissues.

On the point made by the noble Baroness, Lady Randerson, I can confirm that, following Royal Assent, working with charitable and other groups—and learning very much from the Welsh example—we will launch a 12-month communication campaign to support donation. The new system will go live in 2020, after the initial transitional communication campaign has ended. However, the Secretary of State will continue to uphold his duty to promote organ and tissue donation, as set out in the NHS Act 2006. We know that changing the culture around organ donation requires continuous engagement with the public and is not a one-off exercise. I can reassure the noble Baroness, Lady Deech, that we are committed to follow-up campaigns in the years to come, and the noble Baronesses, Lady Finlay and Lady Randerson, whom I applaud for their extraordinary work in Wales, that we are keen to learn from the Welsh experience what works and what, if anything, we can improve on.

Another issue that noble Lords have raised is the importance of the family. As my honourable friend the Member for Thurrock highlighted several times during the Bill’s passage through another place, one of its important aims is to encourage everyone to think about what they want to do and talk to their friends and family about their wishes, so that they are left in no doubt about what their loved one would have wanted. As the noble Lord, Lord Elder, said, no consequence of the Bill could be more important.

Of course, some find such conversations difficult, but the benefit is that in the sad circumstances when a family is involved in discussions with the specialist nurse following a death, they do so in the knowledge that they are doing what their loved one would have wanted. Registering a decision on the Organ Donor Register is the best starting point for that conversation, and the most effective, as the noble Lord, Lord Oates, reminded us.

When families have not spoken to their loved one about organ donation, they are much more likely to reject donation. Some families come to regret that decision when they realise that they could have helped someone who was still alive. But let me leave you in no doubt that, as now, there will always be a discussion with the family on the best way forward. To reinforce the point made by my noble friend Lady Chisholm and in reply to questions from my noble friend Lord Leigh and the noble Baroness, Lady Deech: no family will be forced to agree with the donation if they are strongly opposed to it. My noble friend Lord Lansley spoke from great experience about the importance of good guidance for staff when implementing this regime. I will turn to how we will deal with that issue shortly.

As has already been mentioned by the noble Lord, Lord Hunt, and my noble friend Lady Brady, I confirm that children under the age of 18 will be exempt from deemed consent. That does not mean that they cannot donate but, as is current practice, children of any age will be able to register if they wish to donate or not donate their organs; the parents of the child will always be asked about the child’s decision to donate.

A third issue raised today, and an extremely significant one, is the importance of working with faith communities. I was pleased to hear the noble Baroness, Lady Deech, recognise that the Government have made concerted attempts to work with faith communities to build safeguards into the new system. We have announced various specific measures in the Government’s response to the consultation. For example, from next month, a new option on the organ donor register will allow those who register to ask that their family, or anyone else they wish, has a personal discussion with nurses and doctors about how donation can go ahead in accordance with their religious and cultural customs.

I can state categorically, to reinforce absolutely the point made by the noble Baroness, Lady Thornton, that the state will not take control of anyone’s body as a consequence of this Bill. We will update the current codes of practice on organ and tissue donation for healthcare professionals; in doing so, we will set out how religious and cultural considerations will form part of the discussions with the family and we will involve the different faiths in its development. NHS Blood and Transplant will supplement this with training for healthcare professionals. That work is progressing well and I reiterate the Government’s commitment to working with all faith groups to make sure it is successful.

I mentioned the importance of a new code of practice to implement the new system that we hope to move to; that will be developed by the regulator, the Human Tissue Authority. The existing codes will be updated to reflect the changes and, for ease, we will pull them together in a single code, on which there will be a 12-week consultation period. The noble Lord, Lord Carlile, pointed out that there will also be important implications for the professional regulators. I am sure that the noble Lord, Lord Hunt, will also want to take that on board in the new role we are all pleased to see him playing.

The issue of the NHS’s capacity was raised by my noble friend Lady Sater and others. The Government recognise that it is absolutely necessary for the NHS to manage the increase in donations and to carry out these life-changing operations. My officials have already started early work on planning with NHS England and NHS Blood and Transplant to make sure that the system is ready for the changes. Following these discussions, NHS England will consider the financial and service commissioning implications, so that we have the capacity and expertise to benefit from increased donations.

I will address a couple of issues raised by my noble friend Lord Leigh and reinforced by the noble Baroness, Lady Deech. They asked about the letter written by my honourable friend Jackie Doyle-Price explaining how the Bill would work. I emphasise that the letter is not a supplement to the legislation; it is an explanation of how the system of deemed consent will work in practice. The points that she set out on this hold absolutely. With their permission I would be delighted to share the letter with all noble Lords who are interested in the debate so that they can see the reassurances that we have provided. I believe it will provide some of the answers to questions raised in the debate.

My noble friend also asked whether the organ donor register should be given explicit legal consent. I do not think that is a necessity as the system has been working successfully for 30 years. The Secretary of State continues to have a duty under the NHS Act 2006 to make arrangements to facilitate tissue and organ donation. We believe the system is there; it is about using it to the maximum of its potential.

Before concluding, I will talk about the most important issue of all in getting this right, and that is staff. Specialist nurses for organ donation are highly trained professionals, usually from an intensive care or emergency medicine nursing background. When nurses join NHS Blood and Transplant, they initially receive extensive training over a six-month period. This covers all aspects of organ donation.

A key focus of the training is to enhance nurses’ skills in supporting acutely bereaved and grieving families, as this is an important, indeed essential, element of their role. When a patient has registered their decision to donate or when a family wishes to donate their loved one’s organs, the specialist nurse will skilfully and sensitively navigate the family through the detailed paperwork and mandatory medical history taking. When the family does not agree with the donor’s decision, the specialist nurse is trained to help the family come to terms with that decision. Experience from Wales tells us that this works and I can reassure noble Lords that we will make sure that there are enough highly trained staff to make the most of the changes resulting from this Bill. Our current estimate is that 27 more nurses would be required but, of course, if that number were to rise, we would make sure that they are fully trained and fully financed for the future.

The Government are confident that this piece of legislation will be pivotal in helping to transform and save hundreds of lives. Deemed consent in Wales is already showing promising results, with many more families now agreeing to organ donation when approached for this important discussion with specialist nurses. For those noble Lords concerned about the evidence base for change, we have seen in Wales, as the noble Baroness, Lady Randerson, pointed out, an increase in the number of deceased donors, from 60 in 2014-15 to 74 in 2017. Indeed, she talked about there being 44 in the first six months of this year. So there is evidence for its effectiveness, and our Chief Scientific Officer states in the impact assessment for the Bill that he can say with “moderate certainty”, that systems of opt-out, when introduced with a range of other support, such as logistical support, public awareness and so on, do increase donation rates.

I just pick up one point made by my noble friend Lord McColl on providing an opt-out in the Welsh system which in theory reduces the pool of potential donors. That means that, beforehand, there could have been donors who were having organs taken from them when they were not happy for that to happen. If anything, the Welsh system has provided greater individual autonomy while also increasing the number of donations. That seems to me to tick both the boxes that we would want for any system. The evidence for that is very powerful and gives us cause for hope and encouragement.

I conclude by reiterating the Government’s support for this Bill, congratulating the noble Lord, Lord Hunt, on bringing it forward and thanking all other noble Lords for their excellent contributions. If any noble Lords have continuing concerns about any part of the Bill, I would be more than happy to meet with them to discuss it. The Government are very keen to make progress with this. There is of course a risk that, as the time towards the end of the session gets short, we will not manage that, which would be highly regrettable.

Organ Donation (Deemed Consent) Bill

Lord O'Shaughnessy Excerpts

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

[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.