Organ Donation (Deemed Consent) Bill

Lord Hughes of Woodside Excerpts

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

[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.

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[Lord McColl of Dulwich]

My Lords, Amendment 2 is inspired by Section 2(3) of the Welsh legislation. It requires the Secretary of State at least once every five years to lay before Parliament a report that includes analysis and evidence of whether the introduction of deemed consent under Section 3 of the Human Tissue Act 2004 has been effective in increasing the number of organ and tissue donations.

In the context of knowing, first, that the Organ Donation Taskforce expressed real concerns in its 2008 investigation about presuming consent and, secondly, that, as we have mentioned before, over 180,000 people have opted out of donation in Wales, all having originally been potential donors, it is only right that this kind of commitment to review should be set out in legislation. If the people of Wales deserve the reassurance and protection of a robust statutory assessment then the people of England also deserve it.

My Amendment 2 also requires a review not just of whether the level of organ donation has increased but of whether other factors should be taken into account. When there is talk of any proposed policy to increase donation, we often hear words to the effect of, “Of course, doing X is not the whole answer. It is part of the solution”. That sounds very reasonable but those of us committed to evidence-based medicine need to ensure that it does not become the basis for failing to assess the distinctive contribution of the policy in question to increasing donation rates.

The point has been made that the Welsh Government invested a huge amount of political capital in deemed consent. They wanted to do something distinctive and for other parts of the UK to follow them, and they could not allow it to fail. In this context, although there has been a huge amount of publicity around presumed consent, it is very interesting that in the same timeframe there has, I understand, been increased investment in critical care beds, specialist nurses in organ donation and advertising promoting donation, as opposed to presumed consent.

We know that if you increase investment in critical care bed capacity, it increases donation. We know that if you increase investment in specialist nurses in organ donation, that increases donation. We know that increased advertising encouraging donation increases donation. We also know that presuming consent always reduces your total pool of potential donors because some people will opt out. As I said earlier, in Wales that number is 182,519 and it has steadily increased since the introduction of deemed consent.

In that context, it is entirely possible that simultaneously we are doing some things that will increase donation and others that will reduce it. It is also entirely possible that if you have three initiatives that push donation in the right direction and one in the wrong direction, the net effect will still be in the right direction. It is entirely possible too that if, for political reasons, you choose to highlight in publicity one of the four options, people might conclude that the highlighted option is the reason for success, when actually quite the opposite applies.

In assessing the efficacy of deemed consent, it will be really important to highlight the other steps that we take alongside presumed consent so that there is an honest attempt to find out whether the downside of deemed consent—the withdrawal of potential donors—is offset by positive changes resulting from deeming consent or whether it is offset only by other, less high- profile initiatives that have nothing to do with deeming consent.

In moving this amendment, I particularly congratulate the Welsh Government on the hard-hitting television campaign they introduced for organ donation in the last two years. What is really striking is that it make no reference to deemed consent. It is basically designed to encourage families to talk about organ donation so that family members are familiar with each other’s donation wishes. It is a great advert that could be run in an informed consent jurisdiction such as England. Although the advert has nothing to do with presumed consent, one would expect it to have made a very positive contribution to donation in Wales in the period since presumed consent was introduced.

In that context, I ask the Minister to acknowledge that there is a real challenge here and to commit to putting in place a really robust assessment process that seeks, with energy and determination, to isolate the distinctive contribution of deemed consent from the contribution of other, less controversial mechanisms for increasing donation, such as more critical care beds, more specialist nurses in organ donation, more adverts encouraging donation, et cetera. If it transpires in five years’ time that the policy lever for maximising donation is not presumed consent, I hope that we will be ready both to move on from it and to focus the resources thereby released on organ donation policies for which there is a robust evidence base.

[Lord Hughes of Woodside]

Can the noble Lord say precisely whether there is any value nowadays in carrying a donor card or whether that is now obsolete?

[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.