Organ Donations

Lord Weir of Ballyholme Excerpts

Tuesday 12th December 2023 Lords Chamber

[Lord Weir of Ballyholme (DUP)]

My Lords, I welcome the debate brought forward by the noble Lord, Lord Hunt, and the focus that it enables on this issue. I am supportive of the principle of the legislation that he brought forward, which balances out the opportunity for increasing those making life-saving organ donations, while still being wedded to the principle of voluntary decisions to donate.

In the short time available, I will concentrate on a point touched on by the noble Lord—the specific position of those suffering from cystic fibrosis. This covers about 10,500 people in the United Kingdom, and organ donation is particularly relevant to them because it is highly likely that the vast majority will require it at some point in their lives. Normally that is in the nature of a double lung transplant, but it can also have impact on organ donations involving the stomach. As he indicated, it is not simply a question of widening the pool of people willing to give a donation. The latest figures suggest that in 2022 there were 33 donors providing lungs within the system, but only six operations involving a lung transplant. The figure cited by the Cystic Fibrosis Trust makes reference to about 15%. That led, in part, to the Government’s establishment of their own Organ Utilisation Group, which reported in 2023 and highlighted a wide variety of practice in both the type of organs and between different units.

We have also seen barriers to utilisation that can happen for non-clinical reasons—for example, the absence of a theatre where the operation can be performed. Arising from that report were 12 recommendations. It would be useful if the Government could indicate whether they are committed to all 12 of those recommendations, and any progress they have made on their implementation.

With cystic fibrosis we concentrate very much on the issue of organ donation supply, but demand is also critical. We know that the modular treatment developed in the past few years can reduce the pressures of demand. Agreement was reached in 2019 between the NHS and those providing medications that lead to modular treatment. On the face of it, the initial reports suggest there is clear clinical evidence that it is of benefit. For example, 96 people joined the cystic fibrosis transplant waiting list in 2019, while in 2022 the figure was just 22. What is concerning is that the initial conclusion drawn is that this provides something clinically effective, but there is a question mark over value for money. It is critical that this be resolved, because it is leaving many families in a very difficult position.

This highlights that widening the pool of people giving consent for organised donation is critical for individual families. That is only one part of the picture—the other issues of utilisation of organs and demand is critical as well. That provides us with the full picture and jigsaw, and I am interested in the Minister’s response on those issues.