Organ Donation (Deemed Consent) Bill

Baroness Manzoor Excerpts

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

[Baroness Thornton (Lab)]

My Lords, I shall say just a few words. The noble Baroness, Lady Randerson, and the noble Lords, Lord Carlile, Lord O’Shaughnessy and Lord Lansley, have made the arguments extremely well, so there is no need to repeat them. I just make the practical point that if we want this on the statute book it has to be unamended. We can have these discussions— they are helpful—but that is the truth of the matter. We will all have received a briefing yesterday from Kidney Care UK, which stated that three people die every day waiting for a kidney. That is what we need to bear in mind.

[Baroness Manzoor (Con)]

I was expecting the noble Baroness, Lady Thornton, to talk for a little longer, so I thank her very much.

I thank my noble friend Lord McColl for initiating this discussion on the role of the deceased’s loved ones under the proposed new system. This is an important issue that has rightly been the focus of much of the debate in the other place and here. My noble friends Lord McColl and Lord O’Shaughnessy rightly stress the issue of trust. As both my honourable friend the Member for Thurrock and the noble Lord, Lord O’Shaughnessy, have confirmed on a number of occasions, the family will remain at the heart of the new arrangements, as now. I believe this reassurance has also been given in correspondence to my noble friend and has been confirmed by NHS Blood and Transplant’s medical director and national clinical lead for organ donation. I am happy to give further clarification on this point.

The legislation sets the framework for consent to organ donation and reflects what we already know—that most people support donation and agree that the decision of the potential donor should be paramount. We have, however, always said that, as now, organs and tissues will not be taken without full consultation with persons in a qualifying relationship—that is, the deceased’s close family and friends. There will always be a personal discussion between the specialist nurses for organ donation and the family. This is NHS Blood and Transplant’s current policy and will not change under the new system.

In addition to this policy, the Bill as drafted allows for a person in a qualifying relationship to the deceased to provide information about the deceased’s wishes on donation of their organs and tissues. This is an important safeguard, to find out what the deceased would have wanted and the best way forward. I remind the House that healthcare professionals have a duty of care not only to the patient but to the family. Specialist nurses for organ donations are highly trained professionals 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 supporting families to make end-of-life care decisions, including on organ donation. A key focus of the training is to enhance their skills in supporting acutely bereaved and grieving families.

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[Lord Hughes of Woodside (Lab)]

Can the Minister confirm that the carrying of a donor card short-circuits the long process of finding relatives and so on, or is that simply a figment of my imagination?

[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.

[Lord Berkeley (Lab)]

I may have misheard, but I do not think the Minister answered my noble friend’s question about donor cards. If she does not have an answer, will she write to him?

[Baroness Manzoor]

I thought I had, but if my answer was not clear enough, I will of course write to the noble Lord.

A campaign will take place before the new system is brought into force. The Government fully understand that changing the culture around organ donation requires continuous engagement with the public and that the communications campaign alone will not achieve this.

My noble friend Lord McColl raised the important issue of a zealous doctor taking the organs of one’s loved one without consulting the family. I reassure him that it is unlawful to remove organs and tissues for transplantation purposes without appropriate consent as defined in the legislation. The Bill sets out the system of deemed consent, and families will play an important role in establishing the views of the deceased. If organs and tissues are removed without proper consent, an offence is committed. This is clearly set out in the Human Tissue Act 2004.

The noble Baroness, Lady Jolly, asked about opting in and opting out. I understand the point she made about having an opt-out card, and my noble friend also made that suggestion. People do not usually carry the card at the time of donation. That is why it is vital to record a decision on the organ registry, which nurses always check. It will show what the deceased wished.

As set out by my noble friend Lord O’Shaughnessy at the Bill’s Second Reading, the Secretary of State will continue to uphold his duty to promote organ and tissue donation, as set out in the National Health Service Act 2006. This duty has been delegated to NHS Blood and Transplant which, after the initial national communications campaign, will promote deemed consent as part of its ongoing awareness-raising activity each year. The Government are planning to spend around £18 million on communicating until 2021-22 and to fund follow-up campaigns after that. The campaigns and the relevant information made available to the public will cover all aspects of how the new arrangements will work, including the role of the family.

My noble friends Lord McColl and Lord Lansley and the noble Baroness, Lady Randerson, spoke about funding the system. We will make sure that the system is funded as it should be. I assure noble Lords that we are working closely with NHS Blood and Transplant on its operational costs, which we will fund.

My noble friend Lord McColl mentioned that specialist nurses do not attend donors in 10% of cases and do not speak to the family. Specialist nurses for organ donation attend to speak to the family whenever they are informed of a potential donor. In a very small number of cases the nurses are not contacted, but this is often because the family has already raised the issue with their doctor and stated that they do not want donation to occur and do not wish to speak to a specialist nurse. NHS Blood and Transplant is working to achieve 100% referral and family approach.

I thank the noble Lord, Lord Carlile, for his support. Our ambition is to reach 80% of the population of England, so we are very ambitious. It is important that we do this. As I said, the Government intend to spend around £18 million on communications in 2020-21.

I hope that I have given noble Lords enough reassurance. If even one life is saved as a result of this change in culture—and we are looking for a change in culture—it must surely be worth it. I hope that, with the further assurances that I have given my noble friend and have categorically put on record, he will be able to withdraw his amendment.

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[Lord McColl of Dulwich]

We have always encouraged the carrying of donor cards. We used to keep a whole stack of them in our pockets and hand them out to the patients at Guy’s. As for the evidence, I am not sure, but they cannot do any harm and I would certainly encourage people to carry them.

Finally, and keeping in mind the need for review at a more general level, I ask the Minister in passing whether consideration has been given to extending the proposal that Muslims and Jews should be able to carry donation cards that say that they wish to donate but only subject to their faith being respected. On the basis of the views I have encountered, I think that this would provide reassurance to members of other faith communities as well. I beg to move.

[Baroness Manzoor]

My Lords, I thank my noble friend for introducing this amendment, which relates to a very important issue. Like him, I believe in evidence-based medicine.

The Government have maintained, and have been clear, that a change in the law by itself is unlikely to lead to an increase in the number of organs and tissues available for donation. However, it is an important measure in addressing the tragic death rate due to a lack of organs and tissues available for donation, and we hope that this will be a significant step towards changing the culture regarding organ and tissue donation in England, as I said previously.

I point out to the Committee that NHS Blood and Transplant already has a legal duty to report to the Secretary of State on all its activity and is a world leader in collecting and analysing data on organ donation, retrieval and transplantation. The ongoing data collection encompasses data regarding the registrations on the organ donor register, the number of potential and actual donors, organ retrieval and organ transplantation activity. This data is published in a variety of formats, placed on its website and set out annually in a comprehensive report.

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[Lord Morrow (DUP)]

My Lords, I will be very brief. I accept that this Bill is primarily about what happens in England, but it includes references to Northern Ireland in Clauses 2 and 3. It is the latter clause that my amendment explores and to which my interest turns.

To give some background to my comments, I should first say that there were discussions about introducing deemed consent in Northern Ireland in 2015-16 but considerable concerns were raised and the Bill did not become law. The Department of Health continues to take its responsibilities seriously to promote organ donation in Northern Ireland, has recently consulted on this topic and, in December, announced a £250,000 programme of co-ordinated activities to increase organ donors across Northern Ireland.

Secondly, health matters continue to be delegated to the Northern Ireland Assembly, which is acknowledged by paragraph 44 of the Explanatory Memorandum accompanying the Bill and paragraph 28(c) in the Government’s memorandum concerning the delegated powers in the Bill. Thirdly, I want to thank the Minister for taking the time this week to discuss my amendment and his officials for being in touch with me regarding it. What they sent to me and what they said was quite reassuring. However, I want to put my comments to the Minister today. To be quite frank, getting them on the record is what I am about.

I return to my concerns about Clause 3 and the purpose of Amendment 4: Clause 3(1) says that the Bill extends to Northern Ireland, which I would expect to mean that all three clauses apply to Northern Ireland. However, the title of Clause 1 is “‘Appropriate consent’ to adult transplantation activities: England”. There thus appears to be something of a contradiction in the Bill, which my amendment seeks to resolve. I recognise that Section 3 of the Human Tissue Act 2004 extends to Northern Ireland, but I want to be very clear that the proposed changes to that section, set out in Clause 1 of this Bill, do not. For the sake of complete clarity, I am proposing an amendment that excludes Clause 1 being extended to Northern Ireland and hope that the noble Lord, Lord Hunt of Kings Heath, who is the sponsor of the Bill in this House, and the Minister, will put on the record that there is no intention of Westminster bringing in deemed consent for organ donation in Northern Ireland.

[Baroness Manzoor]

My Lords, I thank the noble Lord, Lord Morrow, for raising the issue of territorial extent and its application in this Bill. I clarify that that the Bill does not change the rules of consent in Northern Ireland and introduces deemed consent only in England. The reason Northern Ireland is included in the extent is because the Bill amends an existing piece of legislation, the Human Tissue Act 2004, which extends to England, Wales and Northern Ireland. While the Bill has been drafted to have a matching extent to that Act, which is the recommended approach when an existing Act is amended, we are changing the law to introduce deemed consent in England only. Deemed consent will not apply to Northern Ireland.

On the second part of the noble Lord’s amendment, the Bill as drafted ensures that organs removed in England under deemed consent can still be stored and used in Northern Ireland as now, even if Northern Ireland does not have deemed consent. This is why Northern Ireland is included in Clause 2(2) and (3). However, for such a provision to have effect in Northern Ireland, there will be a need for a legislative consent Motion from Northern Ireland.

I hope this reassures the noble Lord that we have not undermined policy in Northern Ireland in any way, and reassures the Committee that this amendment is not necessary. I hope the noble Lord will withdraw his amendment.

[Lord Hunt of Kings Heath]

My Lords, the noble Lord has asked me to confirm the view of the Minister, and I so do.