Organ Transplants

Jane Ellison Excerpts

Tuesday 8th July 2014 Westminster Hall

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

This has been an excellent debate, and I am only sorry that I have less than 12 minutes—slightly less time than the shadow Minister took—to respond. As always, I hope colleagues realise that if I cannot respond to substantive points during the debate I will write to them afterwards.

I will try not to reiterate some of the excellent points made about the backdrop to the debate, but I congratulate the hon. Member for Strangford (Jim Shannon) on securing the debate and on being such a stalwart supporter of health debates generally—we are in this Chamber together very often and it was excellent to see him leading today’s debate. There have been many thoughtful contributions today. I would also like to note that as a former member of the Backbench Business Committee I particularly welcome the fact that it has given Parliament the ability to have timely debates. It is excellent that we are having this debate in national transplant week. The Committee is a real innovation that has worked out well.

I join those who have paid tribute to donors and their families and all those who work in the NHS to make organ donation and life-saving transplants such a success story for our nation. Rightly, however, colleagues have focused on where we can do even better, and I will try to respond to some of their points. I will certainly draw the attention of NHSBT to the many good points that have been made.

It has been well established how many people are on the register of those waiting for a transplant. It is also well established what a success the taskforce set up under the previous Government has been. In the six years between April 2008 and April 2014, we saw a real strengthening of the donation programme, with donation rates going up by 63%, and transplant rates by 47%. However, we know that there is more to do, and programmes in other countries are producing even better results.

We have heard of people—in some cases, we have heard moving personal examples of constituents—who are waiting far too long for suitable organs to be donated, and I will touch later on what NHSBT is doing to work with surgeons in that regard. Sadly, many of those people have lost their lives waiting for a transplant, so it is heartening that the number of people registering for organ donation has increased by more than 3 million since 2010 and is now more than 20 million. I pay particular tribute to people in Northern Ireland for the impressive rates there, which the hon. Member for Strangford highlighted.

The critical issue, and one of the things NHSBT wants us all to focus on in national transplant week—indeed, many speeches did focus on this—is the need for people to discuss organ donation with their family. People need to add their names to the register, but they also need to talk with their families about the fact that they have done so. The shadow Minister and others alluded to the fact that a relatively small number of people die in circumstances where they could be donors, and there is some reason to think that that pool of people might actually diminish. The need for people to have a conversation about registering was movingly explained by the hon. Member for Bridgend (Mrs Moon), who used a personal example that highlighted the issue so much better than any number of statistics could.

The UK’s consent rate is the area of particular concern and focus, because it is one of the lowest in Europe. Last year, four in 10 families said no to allowing their loved one’s organs to be donated. In 2012-13 105 families, and in 2013-14 119 families said no, even though they knew their family member was on the organ donation register. Obviously, it is a real concern that they knew that person’s wishes and still said no.

On the point my hon. Friend the Member for Romsey and Southampton North (Caroline Nokes) made about children, it is worth noting that young people can give consent and go on the register if it is obvious they can make that consent real. If they are judged to be old enough to give consent, they can do so; if they are too young, consent will still be down to the parents. That comes back to the point that it is important to have a family discussion, for all the reasons that have been highlighted, and I will talk a little more about that later.

One group of people who play a really important part, and who have made a contribution to the success of our programme, with its higher rates of donation and transplant, are the specialist nurses for organ donation—the SN-ODs. They do amazing work at an absolutely tragic time in a family’s life, and their specialist training has been one of the critical factors in moving us forward. When we last debated this issue, I said that the reality is a long way from cool, calm debating chambers such as this, where we exchange statistics and thoughts on how to improve things. Many decisions about transplant are made at a moment of great trauma; it might be 3 in the morning, and somebody might not even want to be parted from the body of a loved one who has just died. At that moment, the clinicians have a real duty of care towards the family, who will be very distressed, and the reality is that, operationally, clinicians will not overrule a distressed family who are absolutely determined they do not want to donate. This is about having a conversation beforehand, which, as the hon. Member for Bridgend underlined, is so important.

NHSBT and clinicians are very aware of the possible consequences of getting adverse publicity for overriding a family’s wishes. There is a delicate balance to be struck. I should remind Members that lung transplants need to take place within 12 to 16 hours of retrieval of the organ—for hearts, it is up to six hours. That is not a big window of opportunity, and it comes at a terrible moment. That is where specialist trained nurses such as the SN-ODs are so fantastic. However, we need discussions to happen much earlier.

As these debates always do, this debate has touched on diverse opinions about introducing opt-out. I will not go into that in any detail, because we have rehearsed these issues before. However, I would just say that my hon. Friend the Member for Montgomeryshire (Glyn Davies) is right to say that the jury is out on the international evidence regarding whether it is opt-out or opt-in that makes the difference, rather than a concerted programme of many other things—the sort of things, in fact, that our organ donation taskforce has addressed. The strengthening of donation programmes and other steps have made a significant difference, but we will watch with interest the impact on donor numbers of the proposals in Wales. However, we are yet to be entirely convinced that they alone will make the big difference. Again, if a family are strongly against donation when their loved one has died, their strong wishes will not be ignored and overridden, even in the situation in Wales. This still comes down to understanding what families want.

The “Taking Organ Transplantation to 2020” strategy is very much evolutionary, and it builds on the infrastructure we have in place, particularly as regards response rates. Members have mentioned other aspects of it. One aim is to have 5% more donated organs transplanted. Some of the work going on to support that is on improving organ function before retrieval, improving the function of retrieved organs, reducing the rate of declined organs and supporting surgeons in understanding risk. Work is therefore being done under the strategy on those important issues.

During the debate, Members highlighted lots of the good ideas we are using in promoting organ donation and encouraging people to sign up to the register. The Cabinet Office is working on further initiatives, but it always welcomes suggestions. Everyone involved in policy development on this issue is extremely open to good ideas, and I will certainly ensure that the debate is brought to the attention of colleagues in the Cabinet Office.

I also urge Members to do what they can this week. Tomorrow afternoon, NHSBT is hosting a good event of its own, and I hope Members will attend. There have been lots of suggestions of what Members can do. The hon. Member for Strangford said he is using his Facebook page. We can also use links on our websites and social media—MPs are increasingly good users of social media. This week, people are using #spellitout to try to get a conversation going. I urge Members to support the NHSBT event and to use that hashtag. If they are planning an end-of-term bulletin to their constituents, I urge them to pick this issue out to help spread the word.

As was rightly said, it is disappointing to see both the length of time members of ethnic minority communities are waiting for a transplant and the refusal rate in such communities, which is nearly 80%, compared with about 40% nationally. There is a real challenge, which is why my Department is supporting the National Black, Asian and Minority Ethnic Transplant Alliance in looking at some of these issues and addressing the inequality people from such backgrounds face in waiting for a donor.

In June, I supported the launch of a new project to train peer educators from the Pakistani Muslim community in Birmingham to work in communities to increase rates. Sadly, because of parliamentary business, I was unable to join them on the day, but I have suggested that we ask them to join us later this year in Westminster to talk about the project. I will make sure Members are told of the event at the time so that Members—particularly those of us with diverse constituencies—can come and hear about the experience of those involved. In our previous debate, Members mentioned the challenge of trying to recruit more SN-ODs from within ethnic minority communities, because we face a similar challenge with recruitment as we do with the consent rate.

Earlier this year, following our previous Adjournment debate on this issue, the hon. Member for Bristol East (Kerry McCarthy) and I debated cystic fibrosis, and progress has been made. The point about the zones has also been made. The cardiothoracic organs advisory group has recommended that NHSBT review the consequences of introducing the two levels of priority for listing—urgent and routine—along the lines that have been described. Obviously, it is important to make sure the arrangements do not lead to inequity, and I can assure Members that NHSBT will keep the issue under regular review.

I will be talking to NHSBT imminently, at tomorrow’s meeting. Indeed, I have regular meetings with it. In the half a minute remaining, I want to reassure Members that the organisation is extremely proactive and open-minded, and I find it very receptive to new ideas. Many good, constructive and thoughtful ideas have been put across in the debate. I will have a discussion with NHSBT and ask it to review the debate and to respond to hon. Members through me where I have not been able to respond today. I reassure Members that all good ideas are considered and that we are all working in the same direction: we want to increase donation and transplantation rates and to give many more people a chance of life.