Organ Donation: Opt-out System

Jim Shannon Excerpts

Thursday 13th July 2017 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in this debate. I congratulate the hon. Member for Barnsley Central (Dan Jarvis) on presenting what I thought was a passionate, honest and fair contribution. This is a matter I am also interested in and seriously believe in. I will say early on that I subscribe to the opinion put forward by the hon. Gentleman, because I feel that is the way things should be. That is a personal opinion. All of us here obviously agree that organ donation is important, but we might look at it in different ways.

I am not interested in this only because of my role as the DUP’s health spokesperson; I also have a personal interest relating to family members. The hon. Gentleman gave the example of one of his constituents. My nephew Peter was born with a kidney the size of a peanut, which is probably fairly hard for people to comprehend. From the day he was born to the day he had the transplant, he was on dialysis treatment, which, once someone has started, they cannot come off. I am very aware of the issue, and I will make an honest, personal contribution to the debate.

Someone in this world donated that kidney to Peter, who is alive today because of it. The alternatives were looked at by the family, and everyone looked at it in the way that they thought best. His mother was going to give her kidney, but then she became pregnant, so that opportunity fell away. In the meantime, someone else came forward with a kidney donation, which Peter had. Peter is the same age as my second boy, so I can quite honestly relate to the difference between the two boys as they grew up. I understand the importance of organ donation, and believe that people certainly should be on the register.

I was on the Organ Donation Northern Ireland website just before we came here, and the first sentence I read really impacted upon me:

“Most people would accept an organ if they needed one.”

That is not really surprising, is it? Yet only 40% of us in Northern Ireland have signed the NHS organ donor register. We would all want an organ donation if we needed it, but we have not all signed up. I have to ask the question honestly, sincerely and fairly to those here: if that is the issue, would they not donate their organ? I know that I would.

I carry a wee organ donation card, although it does not make any difference. It is long faded because it has been in my wallet—they say that the money in that wallet is like a prisoner, but that is by the by. I signed up for the card when I was 18, although that is no longer necessary, because when people sign up for their driving licence and tick that box, they are registered forever. That is how we do it in Northern Ireland. The card is very faded, but it says:

“I would like to help someone to live after my death”.

That is its purpose.

I was returned for Strangford with 42% of the vote in 2015, and this year—I thank the people of Strangford for this—I was returned with 62%. I have to tell hon. Members that it is a much better position to be in this time around than in 2015. It is a lot more safe and secure, but how much more so for those who need donations as a matter of life or death? Last year, 12 people died in Northern Ireland while waiting for an organ transplant. That may not seem a huge number, but speak to those 12 families and hear exactly what it means to them. Every one of us in the Chamber— those in the Gallery and hon. Members who are contributing—will know exactly what it means. It is a phenomenal loss.

The sad fact is that some people who passed away in that same year may well have wanted their lives to make a difference by donating their organs, but because their families did not know, it did not happen. It is about raising awareness, having the debate today and every one of us searching our souls and consciences for how to respond. It is really important that we do so; it is a conscious decision that everyone should consider. I completely believe that this is a matter of conscience. In fairness, the hon. Member for Barnsley Central said that in his contribution. He recognises that it is a matter of conscience, and I heard that in what others said as well.

I will look down on no one who feels that, due to a religious belief or some other belief, they cannot donate their organs. That is freedom of belief in action and the conscience clause is important, but what I cannot understand is someone who simply refuses to consider or discuss the possibility. I agree with the Welsh example: I believe that people should be on the list unless they opt out. We have to up the ante and move forward constructively.

I mentioned the case of my nephew. There is another case that I always remember. There was a gentleman in Newtownards whose son was injured in a car accident. Unfortunately, he was on life support and was going to die. His dad told me that his son, by his death and donation, was able to save six lives. In Newtownards we also have a very active group of people who are donation recipients. The council at that time—it was called Ards Council then; it is now Ards and North Down Borough Council—had made a remembrance garden, which we had an opening ceremony for. Many people in not only my constituency but across the whole of the United Kingdom of Great Britain and Northern Ireland understand exactly what this means.

The last time I spoke about organ donation in this Chamber, I said that 30% of people in the UK were registered to donate. That figure is now 36%. That is great, but it is still not enough. That is why we have to do something and look seriously and honestly at what is being proposed today. Registered donor numbers have increased every year since 2012 and are 20% higher than five years ago, yet three people a day are still dying needing a transplant. Is that right? No, it is not. We have to do something about that. The figure could be lower if people were prepared to think or talk to loved ones about it.

I see so many driving licence forms in my office. It is not for me to judge, and I will not—I never judge anybody on donation—but on too many of those driving licence forms people have not ticked the box to say that they want to be a donor. I do not know why they have not done it. It is up to them to make their own mind up, but when our time comes to pass on from this side of the world, we can help someone. If I can help someone with this old, fragile, diabetes 2 body standing here, why should I not? It is time that people understood the importance of this decision.

I am conscious that other Members want to speak, so I will not ramble on too much longer, but I want to make a wee comment about Wales. We are all aware that in Wales, where they have had so-called deemed consent since December 2015, only 6% of the population has chosen to opt out, which speaks volumes. More importantly, in that one year in Wales, as the hon. Member for Newport West (Paul Flynn) said, 39 organs were transplanted through deemed consent out of a total of 160 transplants. That 39 out of 160 was a significant contribution to saving lives. Why should we not do that? I cannot get my head around it at all.

I will finish with this, because you are giving me the eye, Ms Buck, so I need to be careful. I urge people to be aware of the decision and the impact that it can have on families. We must take more positive steps to see a better take-up of organ donation, while always ensuring that people can make the choice themselves. I am conscious of the conscience clause. The simple fact is this: we can save lives in our deaths. Let us encourage people to do this in a manner that is sensitive and yet makes clear the case that we would nearly all take an organ if we needed one—would we not?—and should therefore all be willing to give one.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Jackie Doyle-Price)]

It is a pleasure to serve under your chairmanship, Ms Buck. I thank all Members who have participated in this debate. Organ donation has been such an established practice in the NHS for quite some years that we often forget about it. The way that everyone has brought the subject to life today, with references to their own stories and experiences, has reminded all of us how important it is. Perhaps it is time this subject had some renewed focus, if only to raise awareness and encourage people to opt in, whether or not we ultimately introduce an opt-out system.

I pay tribute to the hon. Member for Barnsley Central (Dan Jarvis). He could not have done a better service to his constituents Joe Dale and Max Johnson in the way he expressed his argument with considerable persuasion. Perhaps through him, I could send my good wishes to Joe Dale’s family. I hope they get some comfort from the fact that Joe lives on by giving life to others. As we know, one organ donor can save or transform up to nine lives. What better legacy can we have than for other people to live on? We, as Members of Parliament, could perhaps be more proactive in giving that message, as we breathe life into this much neglected subject.

I am told that we last considered organ donation on the Floor of the House in 2014. This opportunity to discuss it is very welcome, and we will have many more opportunities, given the confirmation from the hon. Member for Coventry North West (Mr Robinson) that he will use his private Member’s Bill to push this issue forward. I am sure it will get a good airing.

The hon. Member for Washington and Sunderland West (Mrs Hodgson) presented tests at the end of her speech for what we should bear in mind when deciding what to do in this space. I think we should do all those things, in any case, as we talk about kidney donation. The key has to be public awareness and ensuring that medical professionals do their bit to encourage people to participate in organ donation. We must also engage with community groups where there is a specific problem. That is my biggest priority.

I want to say a bit more about the context. Obviously, we want to encourage as many people as possible to make clear their intention to donate after death and to have that conversation with their families. That is often where the decision is made. Medical professionals need the requisite training to have these sensitive conversations.

As the hon. Member for Barnsley Central mentioned, not many people understand the system of organ donation. We can all sign up to be on the donor register, but not all of us will be in a position for our organs to be used. Quite often, organs can be used after an unexpected and traumatic death, and it is very difficult for any medical professional to have a conversation with the family about what should happen to the deceased’s organs. We need to have a lot more understanding and be a lot more willing to make it clear to our loved ones that we would want our organs to be donated if we were ever unfortunately in that position.

I must pay tribute to all those in the national health service who work in this area. Their determination and commitment makes donation and transplantation possible. Although we still need more transplants, we have seen a significant increase in donations in the UK. We saw 1,413 donors giving 3,712 transplants in the last year, which illustrates how many lives can be saved by one successful approach to donation.

It is incredible that, as NHS Blood and Transplant told us only this week, more than 50,000 people are now alive thanks to organ donation and transplantation. The first transplants took place in my lifetime, and they were seen as revolutionary. One reason we have not given this subject as much attention is that donations now tend to be seen as commonplace.

There is much to celebrate, but there is also much more to do, not least because 457 people died last year while on the active transplant waiting list. That ignores the 875 people who were removed from the list because they had become too ill to receive a transplant. Many of those will have died shortly afterwards. At any one time some 6,500 people are on the waiting list, and again, although waiting times are declining, we cannot be complacent. We need to make sure that those people have hope that, when they are on the list, they have a realistic chance of receiving a transplant.

Our biggest challenge is black, Asian and minority ethnic donors, for two reasons. First, black and Asian people are more at risk of illnesses that may require a transplant, such as high blood pressure and diabetes, and secondly, the consent rate for those communities is half that of the white population. The same is true for blood, so we need many more blood donors from the black community. There is a constant need for that because of the prevalence of sickle cell anaemia, but we know that only 1% of the nation’s blood donors are black. So we need to do much more not only in organ donation but in blood donation.

There is some encouraging news. Last year, more than 6.4% of all deceased donors were from black and Asian communities. That is a significant increase, so the direction of travel is positive, but we need to do much more. Average waiting times for kidney transplants have fallen for everyone, and that rise in donations from black and Asian communities has meant that the biggest fall in waiting times is for black and Asian patients—down from four years to two and a half over the past seven years. The direction of travel is good, but we need to do more, because people from black and Asian communities still wait at least six months longer than white patients. That problem needs to be tackled, because recipients are matched according to blood and tissue types, which differ across ethnic groups.

As we set out in our manifesto, we are determined to target that audience, and we welcome the involvement of all hon. Members in that. We are looking at other partner agencies, and we are working with the National Black, Asian and Minority Ethnic Transplant Alliance. However, many other groups need to be engaged, not least to tackle misplaced cultural concerns about donation. It is not incompatible with Christian beliefs to bequeath one’s organs, and we need to make sure that that message gets out loud and clear by engaging with all community leaders in this space.

We have heard some persuasive arguments on opt-outs and why we should move towards an opt-out system, and I certainly understand the thinking behind that proposal. To add my personal experience of this, my constituent Patricia Carroll regularly lobbies me on the subject. Her daughter Natalie suffered from anorexia and diabetes, and died awaiting a kidney and pancreas transplant. Patricia tried to donate her own kidney to Natalie but was not a match. Following Natalie’s death, she decided to become a live donor. Last year—I think it was around Christmas—she gave a kidney to a 22-year-old young man called Joe who had been on dialysis for three or four years.

What Patricia has done for that family—it is the family, not just the individual—has transformed their lives. I again pay tribute to all live donors. That is an incredibly altruistic thing to do when recognising the impact it can have on the donor’s own health. It is amazing, particularly when there are donors who have absolutely no personal relationship with the beneficiary of their organ. Patricia will be watching with interest to see what I have to say about this.

There are obvious attractions to opt-outs as a tool; anything that will increase the pool of available organs will obviously be attractive. However, opt-outs on their own are not a panacea, and the references to what we can learn from Spain are significant. The issue is about what is wrapped around that. Specifically, it is not just about public understanding and public awareness of why we need donation and what it means, but about how the medical profession deals with it.

The crucial point that affects donation is the conversation in the room between medical professionals and bereaved families. We have seen examples of families refusing consent because they are not convinced that their relatives wanted to donate and it feels safer to say no. Equally, we have seen that being overruled. We find that the highest rates of donation are achieved when we have specially trained nurses who have that conversation with the family in a sensitive way. When such conversations take place, rates of donation go up significantly. Those conversations are critical. If we look at the experience of Spain, we see that that injection of medical advice achieved the step change in donation rates, over and above having an opt-out system.

None the less, we are interested to see the experience in Wales. We are certainly prepared to consider that, and obviously we need to consider it sooner than we might have intended, given the private Member’s Bill, but opt-out will never be a silver bullet to achieve more donation. We are committed to ensuring that we do whatever we can to increase donation. Our strategy, “Taking Organ Transplantation to 2020”, contained the ambitious targets that the hon. Member for Barnsley Central mentioned. Although we have not actually achieved the 70% that we are aiming for, the direction of travel is positive. The fact that more than 23.5 million people have opted in to donate their organs is quite an achievement, although I am not complacent. To give credit where credit is due, the NHS and everybody involved have achieved a great deal in achieving those figures.

The key thing is the availability of specialist nurses. We must ensure that organ donation is embedded as a normal consideration of end-of-life care, where that is available. We have looked at developing a new organ donor register that makes it easier for people to opt in. We are trying to make available as many opportunities as possible for people to do that, for example when people sign up for a new driving licence. In any interaction with Government, we need to give people that option, because where it is a positive choice, it is more likely to be effective.

[Jim Shannon]

We all agree about the need to raise awareness on the mainland and across the whole United Kingdom of Great Britain and Northern Ireland. When it comes to raising awareness—I presume the Minister will do so imminently—will she engage with the Northern Ireland Assembly, provided that it is still going, and with Scotland and Wales to ensure that we have a UK-wide programme of awareness to get people on the register?

[Jackie Doyle-Price]

The hon. Gentleman makes an excellent point. He might have seen that I am wearing a pin, which is a nice pink heart that says, “Yes”. That campaign is being run by NHSBT to highlight the need for people to offer to be a donor. If people are prepared to do it, they should wear this nice pin. We need to use any number of the tools at our disposal, and we need to be a lot more imaginative about the ones we use. I look forward to seeing him with his nice pink heart.

I should conclude my remarks to allow the hon. Member for Barnsley Central an opportunity to respond to the debate. I think that we are all united in the outcome we are trying to achieve, which is to encourage more people to be willing to donate their organs to achieve more transplants. With regard to the tools we employ to achieve that, we will look at opt-out and consider whether that would do anything, but in the meantime we are prioritising engagement with black and minority ethnic communities. We will continue to invest in specialised nursing to have those very sensitive conversations, because they need to happen. We will look at what more we can do to encourage more families to be willing to give consent at the time it needs to be given. I thank everyone for contributing to the debate.