Organ Transplants

Baroness Ritchie of Downpatrick Excerpts

Tuesday 8th July 2014 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I am pleased to have the opportunity to speak on this subject. We debated the organ donation register only a few weeks ago, but it is appropriate to highlight the issue in national transplant week. I believe that everyone present is committed to ensuring that organ donation increases throughout the United Kingdom.

I pay special tribute to the hon. Member for Stretford and Urmston (Kate Green), because although I am introducing the debate, I must confess that she asked me to do so. We asked the Backbench Business Committee for an opportunity for this debate, and that opportunity has come this morning. I thank the hon. Lady for giving us all the opportunity to participate, and I hope that the debate will be useful to all involved. I also thank the Backbench Business Committee for giving us the opportunity to speak on this subject in national transplant week. I am passionate about organ donation not just because of the cold facts, but because I witnessed first hand how urgent and important organ transplantation is when my nephew Peter required a kidney transplant.

I was delighted to hear that the latest figures from the British Medical Association show that the number of people who have registered to be an organ donor in Northern Ireland has reached an all-time high of just over 582,000. I checked that figure last night and again this morning because I wanted to make sure that it was right, and it is correct: 582,000 people are registered. That is fantastic news. That all-time high has no doubt been aided by the marvellous work of our Health Minister in Northern Ireland, Edwin Poots, who since 2012 has been dedicated to increasing awareness of organ donation and achieving the desired figures.

That said, much more needs to be done. The UK has one of the lowest rates of organ donor registration in Europe, with 96% of the population supporting the principle of organ donation yet only 30% actually being registered. More than anything else, those low numbers are because the UK population is unaware of and often misinformed about organ donation, how to register, the process involved and how vital transplants are. Many campaigns are under way. I do not often read The Sun, but it is running a campaign on transplants. It pursues many issues, and today it is trying to encourage more people to sign up to the organ transplant list.

Currently, 7,000 people are waiting for an organ transplant, and three people die each week while waiting for organs. That is three people too many: three families left heartbroken by the loss of a loved one who could have been treated if more people were on the list to donate. Just one person can save up to nine lives, so the Government must encourage as many people as possible to sign the register. I know that the Minister is committed and that her response will be positive. With this debate, we want to encourage our nations, collectively, to get involved and sign up.

A third of families refuse to give consent for their loved one’s organs to be donated because they are unaware of their loved one’s wishes. That is just one reason why the Government must consider legislating on the introduction of a “soft” presumed consent system, wherein the families of the deceased can object to donation if the deceased dies without expressly electing whether or not to donate their organs. I strongly believe that people should be on the list as an organ donor unless they opt out. That is very much the soft option. Such a system would undoubtedly increase the number of organs available for transplantation and reduce the number of people dying while on waiting lists.

In 2013, the Public Health Agency in Northern Ireland carried out a survey in an attempt to gauge public opinion about organ donation and came up with some interesting figures. It found that 56% were in favour of presumed consent, just 18% were against it, 8% wanted more information and 18% did not know. A further 62% said that they would not opt out if a soft system was introduced. I believe that there is movement among the people of the United Kingdom of Great Britain and Northern Ireland towards the soft option, which we should consider.

The NHS “Taking Organ Transplantation to 2020” strategy seeks to increase donor rates by 80%, but it does not include or discuss the option of a soft opt-out system. Perhaps the Minister could share her thoughts on that in her response. The lack of mention of a soft opt-out is unfortunate, as the strategy refers positively to the evidence from countries such as Belgium, Croatia and Norway showing

“an increase in donation rates following a move to an opt-out system together with investment in infrastructure and raising public awareness of organ donation.”

It is clear that other nations have made the move and seen the benefits; it is time that our nation moved in the same direction.

The 2013 survey also found that 84% of respondents in Northern Ireland supported the idea of transplantation, but only 32% were on the register. Worryingly, more than a third of respondents were not aware that the organ donor register existed, with that lack of awareness being lowest among 16 to 29-year-olds and people over the age of 65. Perhaps we need to do more to encourage people in those two age categories.

[Ms Margaret Ritchie (South Down) (SDLP)]

The hon. Gentleman is making a compelling argument about the need for organ transplants and has addressed the opt-out system that has only recently been introduced in Northern Ireland. Does he have any suggestions as to the possible reasons why many people do not offer to give their organs for donation?

[Jim Shannon]

I thank the hon. Lady for that intervention. I will come on to address that issue later in my speech, but we can do a number of things. In Northern Ireland, when people apply for a driving licence they must decide whether they want to be on the organ donation list. There is no dispute: they have to answer yes or no. If they answer yes, they are on it; if they answer no, they are not. It is as simple as that. I think that that is one reason why 582,000 people are on the donation list in Northern Ireland. Perhaps the Government here on the mainland can take that approach as well.

I want to highlight a couple of other important points about the 2013 survey. Many of the respondents were wrongly informed on the subject of organ donation—for example, one in five wrongly thought that it was possible for a brain-dead person to recover from their injuries and that only the organs of young people were good for transplants. That shows the need for better understanding of the system, and we should look at how we can educate people through campaigns in schools, TV adverts and in GP surgeries. Maybe we MPs can post on our Facebook pages or websites—not maybe; yes we can. We must encourage people to sign up to the organ donation list.

In Northern Ireland, 78% of people surveyed said that they would accept an organ if they needed one. Some 96% of families claim that if they knew their loved one’s wishes, they would agree to the donation. That shows how important it is for families and friends to discuss organ donation. It should be a subject for consideration. Perhaps a media campaign could be organised and the issue written into the storylines of some of the soaps. That might make it an essential subject matter for discussion around the dinner table.

Several charities have backed this debate, and I would like to mention a few shocking statistics that they have kindly supplied me with. I want to focus on cystic fibrosis; I know that other Members will focus on other things. The chief executive of the Cystic Fibrosis Trust, Ed Owen, said:

“We are delighted to lend our support for National Transplant Week. For many with the life-shortening condition of cystic fibrosis, a lung transplant is the only way to prolong life. Yet it is a tragedy that one in three on the transplant list will die waiting for new organs.

It is vital that more lungs are made available for transplantation. So we strongly support measures to encourage more people to donate their organs in the event of their death—and we continue to support a change in the law to a system of presumed consent to help ensure more people have that vital discussion with their loved ones about their wishes.

Alongside this, more effective action is taken to ensure that a greater number of donated organs are used for transplant with a new national lung allocation scheme and greater use of extended criteria lungs. Our report, ‘Hope for More’, published earlier this year, set out a series of recommendations”.

I want some of those recommendations to be looked at.

Last Saturday, I was judging horses. I do not know very much about horses, but I was lucky; they said to me, “Pick the one that looks the best to you,” which was dead easy. It may not have been the horse the experts thought was the right one, but it was the one that I thought was the right one. At that event, I met a constituent, a gentleman with cystic fibrosis. I remembered him as a healthy, active person, but when I met him on Saturday, he told me that his condition had worsened. I am ever conscious of him and of many other constituents affected by this issue.

In March 2014, the Cystic Fibrosis Trust published the report “Hope for More”, which contained 12 recommendations for increasing the number of successful transplants. Key among them was a call for a national lung allocation system similar to the UK urgent heart system. We have a system in place that works; why can we not extend it to lungs? Regular audits have been key to the success of the urgent heart system. Surely a similar system could be introduced in relation to lung transplants.

In Germany and America, the introduction of a lung allocation system has led to a significant increase in lung transplants and huge decreases in waiting lists. I presume that we could do the same here; there is no reason why we cannot. The current system certainly seems flawed. If a patient in the south of England needs a lung transplant, they must wait for one to become available in their area rather than receiving a lung from the midlands or the north of England. We need some kind of scoring system so that those who are most desperate for a transplant receive one first, and people are ordered from those most at risk to those least at risk.

The Cystic Fibrosis Trust has come up with more ways in which the number of organ donors and therefore transplants could be increased. Although time does not permit me to go into great detail—I am conscious that other Members want to contribute—I believe that those suggestions warrant a committee to consider and delve into the issue. I hope that the Minister will indicate in her response whether she feels that a committee would be helpful in moving the campaign and this debate further on.

Existing lung donor criteria were originally drawn up over 30 years ago. Although they were reviewed in 2001, they have changed little. The criteria place limits on donors according to age, previous health complications and a number of other clinical measures. Although it is important to ensure that only viable lungs are transplanted, those limiting rules mean that lungs from fewer than 25% of brain-dead donors are used in clinical lung transplantation. There are clinically viable lungs among the remaining 75%, and we need to maximise their use. I suggest that we look into that.

On lung resizing, data on organs exported overseas suggest that many lungs from larger donors are not used due to size mismatch. The technology exists to resize organs, and it must be made more widely available. People with cystic fibrosis have smaller than average bodies due to difficulties absorbing nutrients from food.

Extracorporeal membrane oxygenation techniques, which artificially preserve critically ill lung transplant patients and allow them extended time to receive donor lungs, have been developed to prevent death. ECMO is available at eight designated centres in the UK, but guidance is lacking on its appropriate use in lung transplants, where it has been shown to work as a bridge between respiratory failure and transplantation. It is feared that without clear guidance, ECMO will not be used appropriately in such circumstances, leading to adverse outcomes for patients.

The NHS Blood and Transplant 2020 strategy commits to providing

“guidance on levels of acceptable risk in relation to offered organs, particularly from extended criteria donors”.

It notes:

“Clinicians…will use their judgment, based on the current national and international evidence, to draw up criteria for non-acceptance”

and that

“there is variation in acceptance practices throughout the UK.”

Further, the strategy lays out actions

“to improve certainty about organ function”,

including investment in research to identify better biomarkers associated with good or poor function.

The Cystic Fibrosis Trust believes that it is the responsibility of NHSBT to publish guidance that brings together current national and international evidence to provide an up-to-date framework to support and guide clinicians’ judgment. It is a weakness of the NHSBT 2020 strategy that there is no commitment to providing clinicians with such a resource. Since the introduction of a German surgeon, André Simon, as head of transplant at Harefield, transplants have increased by 50%, while outcomes have remained every bit as good. It is ascribed to the culture difference in Germany. André Simon, having transferred that willingness to use extended criteria lungs at Harefield, has had an impact on the transplant programme there.

The 2020 strategy mentions the need for NHS hospitals and staff to be better supported to meet demands. That is welcome, but no mention is made of lung downsizing, and very little is made of extended criteria organs. Elsewhere in Europe, donor lung resizing is commonplace and outcomes are equitable with those of lungs that are not resized. Only three doctors in the UK can resize lungs, so it is a lottery as to whether they may happen to be around when needed. That is not disrespectful to anybody; it is a fact of life. Methods such as those, which involve controlled and safe innovation, are key to improving the likelihood of a lung transplant and go hand in hand with the NHSBT’s aim to

“ensure that transplant centres have the capacity and surgical expertise and other clinical skills to meet the demands for transplantation”.

Innovation has not been addressed in detail in the strategy, but it has been identified as an area on which commissioners must focus in order to make it a reality. Although the NHSBT strategy expresses a desire for a 5% increase in the number of hearts and lungs transplanted from donors after brain death, it is unclear how that will be achieved. We believe that there must be a renewed focus on understanding which lungs are suitable for transplant. There is strong evidence indicating that a new approach is increasing the rates of successful lung transplant elsewhere in the world.

Recent scientific guidance suggests that extended criteria lungs are key to progress in increasing lung transplant rates. Research published over the past 10 years by a range of international centres such as the university of Toronto, Hannover medical school, University Hospital Zurich and the Royal Brompton and Harefield Trust suggests that the use of selected extended criteria lungs may safely expand the donor pool without adverse consequences for lung transplantation. Many lungs designated as marginal by the International Society for Heart and Lung Transplantation criteria are now perceived by experts to be as clinically effective as standard criteria lungs.

Things are changing. Scientific evidence and research shows that more lungs are suitable, and we should be using them. Although the medical evidence is continually evolving, public perceptions are falling behind. We must address the issue of education and perception in the general public. We as MPs, this Government and the House can collectively ensure that that happens.

The charity Anthony Nolan seeks to help people with blood cancer or rare blood disorders who require blood stem cell or bone marrow transplants. The charity has said that despite the fact that there are more than 553,000 donors on the register, there are still not matches for every patient in need of life-saving transplants. Once again, more donors from black and minority ethnic communities are needed, as the only chances of finding a match are among those of similar ethnicity.

The average number of donors per constituency is 796, which is encouraging, but more are desperately needed. In my constituency of Strangford, we have a lot to do, with just 381 donors. I intend to use my opportunities as an MP through Facebook, my website, this debate and the local press to encourage more people to sign up and show the importance of organ donation and transplantation back home, but we must encourage Government to consider new ways of campaigning and raising awareness and new approaches, such as a soft opt-out system and a national lung allocation system.

I have had other correspondence from other bodies relating to organ transplants and blood safety. There are certain risks to organ donors, but they can be monitored in such a way as to reduce safety concerns. Maybe we need to raise the level of awareness and education, so that donors know they are in safe hands. We need to ensure that blood donors and organ transplant patients receiving blood transfusions are as well educated and informed on blood safety issues as they can be.

I am very aware that other Members want to speak and I will give them that opportunity; I also want to give the shadow Minister, the hon. Member for Liverpool, Wavertree (Luciana Berger), and the Minister the opportunity to conclude the debate. I will just give a few figures to put matters into perspective. Since 1 April, 309 people have donated organs; an additional 563 people have donated corneas; 824 people have received the gift of sight; and 804 people have received transplants. However, there are still 6,966 people waiting for the gift of a long and healthy life. Ultimately, choosing whether or not to donate organs will always remain the individual’s right, which is good and proper, but we in this place have a responsibility to ensure that the individual is well-versed in the matter and that the choice they make is an informed one. In organ transplant week, we need to focus on the legislative change that can and will put more people on the organ donor list, so that we can save even more lives. The first stage of that campaign is today in Westminster Hall, and we ask the Minister to respond appropriately.