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.
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