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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.
Caroline Nokes (Romsey and Southampton North) (Con)
As ever, it is a pleasure to serve under your chairmanship, Mrs Osborne. I congratulate the hon. Member for Strangford (Jim Shannon) on having secured this timely debate. As he said, it is national transplant week, and I wish to emphasise a particular aspect of organ donation.
The hon. Gentleman said he seldom reads The Sun; I assure him that I rarely read the Daily Mail. However, the Daily Mail has joined the campaign to encourage more organ donation and it has picked up on the case of a young boy who lives in my constituency. James Lewis, just four years old, is one of the 32 British children who desperately need a new heart. He was diagnosed last year with restrictive cardiomyopathy, which means that the lower chambers of his heart are rigid and cannot fill up with blood. His parents Kate and David have now spent nearly a year hoping and waiting for a donor, but importantly for them they have thrown their energies into Live Life then Give Life, a charity campaigning to save and improve the lives of all those in need of, or in receipt of, organ and tissue transplants. The charity exists to improve education and awareness of organ donation, and to fund projects that increase the number of successful transplants in the UK.
Little James has become something of a poster boy for the campaign and his parents have taken the brave decision to talk about child organ donors, to remove the stigma surrounding the issue of organ donation by children, as well as the superstition about it that there sometimes is. The hon. Gentleman spoke about the amazing technology that exists, including the ability to resize lungs, but unfortunately hearts cannot be resized. James is a four-year-old boy and because of his condition he is tiny; he can accept a heart only from a donor who is, at most, three times his body weight. Inevitably, therefore, that organ would have to come from another child.
I am sure that many of us here today have registered as organ donors ourselves, but how many of us have also signed up our children? As Kate Lewis says, organ donation needs to be much more visible and that is part of the reason why she has been so open about James’s condition. If she could ask one thing of the Minister today, it would be a Government-backed campaign in hospitals, doctors’ surgeries, Sure Start centres and schools as a way of removing the taboo that surrounds child organ donation.
We all appreciate how hard it must be for any parent to have to make a decision about organ donation at a dreadful time after a tragic event. However, there are significant time pressures because organs have to be retrieved very quickly. That is why it is so important for people to talk about organ donation and to understand what their loved ones’ wishes are, so that at a very difficult time the decision, in many ways, has already been made and people know what everybody’s wishes are.
I am sure that my hon. Friend the Minister will want to tell us what strategies are in place to encourage organ donation and to increase the sign-up to the donor register. It is a sad fact that although 31% of adults are signed up to the donor register, it is thought that about 57% of parents would not give consent for their child’s organs to be donated.
I urge my hon. Friend the Minister to consider pushing for discussion of organ donation to be included as part of citizenship education or personal, social, health and economic education in schools. For many children, the issue can be astonishingly straightforward, and many of them have said that they see it as being just like recycling—making good use of something that would otherwise go to waste. It is Kate’s belief that children are far more open to the idea of organ donation than their parents, and I have no doubt that she is right.
Children such as James desperately need replacement organs; their futures are entirely dependent on receiving them. As I said at the beginning, I wholeheartedly congratulate the hon. Gentleman on securing this debate, which is an opportunity to bring this issue out into the open and for ideas from a range of charities to be debated. I have mentioned Live Life then Give Life. The Cystic Fibrosis Trust has also been in touch with me, and its “Hope for More” report gives some really good pointers as to the way forward. This week is an opportunity to bring this issue to the fore and to discuss the myriad ways in which we can break any remaining taboos surrounding this life-giving issue.
Kerry McCarthy (Bristol East) (Lab)
Mrs Osborne, it is a pleasure to see you in the Chair, as always.
I thank the hon. Member for Strangford (Jim Shannon) for securing this debate and for raising awareness in the House of the desperate need to increase organ donation. I will focus on cystic fibrosis. As the Minister will know from an Adjournment debate I secured a few months ago, I have a nine-year-old niece who has CF. Thankfully, she is in pretty good health at the moment, but as a family we obviously live with the knowledge that her condition is likely to deteriorate, particularly as she gets into her 20s.
In that Adjournment debate, I spoke about the excellent CF centres that we have in Bristol for children and adults with the condition, and one of the key things that I discussed with people when I visited Bristol’s adult CF centre was the desperate need for lung transplants. Thankfully, life expectancy for people with CF is increasing; it used to be very much a childhood disease, as people with CF did not survive into adulthood. However, it is still a life-limiting illness and most of the 10,000 people with CF in the UK will need a lung transplant to extend their lives.
CF is the third most common reason for lung transplantation and CF patients have the best survival rate among those who receive lung transplants, with 60% of them living for at least another five years and some for much longer. Obviously, given medical improvements, the situation is getting better all the time. The Cystic Fibrosis Trust gives the example of 43-year-old Vicky Petterson, who was successfully given a transplant when she was 28, enabling her to watch her son grow up and to celebrate two decades of marriage. A lung transplant is not a cure for CF, but it can give the recipient and their family the priceless gift of more years of life.
Generally, there are about 60 people with CF on the transplant waiting list at any given time. On average, they will be on the list for 412 days, and it is quite shocking to compare the UK’s statistics in this area with those of some other countries. In Austria, the average wait is 107 days; in France, 110 days; in Spain, 180 days; in Belgium, 194 days; and in Germany, 244 days. The Netherlands is much worse than those countries, with an average wait of 594 days, but the UK figure is one of the worst in Europe, with an average wait, as I said, of 412 days, which obviously puts a huge strain on patients waiting for transplants. While they wait, their condition will deteriorate quite significantly; many of them will become dependent on oxygen and will have to spend most of the time they wait in hospital, as they require intensive treatment. Usually, they would not be expected to live for more than two years without a transplant, so a clock is ticking as they wait for the call about a transplant coming through.
A few months ago, the case of Matt Lodge was reported in The Bristol Post. Matt was 23 and had done pretty well throughout his time at university, but then his condition had suddenly deteriorated. While he was waiting for a transplant, he always had to stay within four hours of Birmingham, so that he could be ready to drop everything and go there for a transplant. One night, he received a phone call at 1.30 am to tell him to go to Birmingham. He obviously headed up there, only to be told that there had been a mistake and his blood type was not compatible with the donor organ, so the operation could not go ahead. Several months later, he is still on the transplant waiting list; we can only imagine how traumatic that must be for him. It was very brave of him to have gone public with his experience and to use it to support the opt-out campaign and to try to encourage more people to come forward as donors.
As the hon. Member for Strangford said, the Cystic Fibrosis Trust is campaigning to maximise the use of organs. The trust’s “Hope for More” campaign has already been mentioned, as has the national transplant week’s “Spell it Out” campaign.
Some 32% of the UK population—just over 20 million people—are registered at the moment, but it is important to note that lack of registration is not necessarily a problem, because fewer than a third of donors would have been registered in the first place. The biggest issue is consent. The CF Trust reports that the UK has one of the highest rates of family refusal in the western world. Obviously, it is difficult for families to face such a big decision when they have just lost someone: they might feel that it is a violation of their loved one’s body or they might just not be ready to talk to doctors about such issues, particularly if the death has been sudden. That is why it is so important for people to discuss the issue with their families. It is one thing carrying an organ donor card or being registered online, but the best thing people can do is tell their family in advance that they would want that done, because then the decision is much more straightforward.
The hon. Member for Strangford talked about resizing—downsizing—lungs. The “Hope for More” report details ways, including resizing lungs, to reduce the time that people spend on the waiting list, other than just increasing people’s willingness to be donors.
Just 23% of donated lungs were successfully transplanted last year. Some of those not used may have been clinically viable, if only certain procedures could have been followed. As the hon. Gentleman said, the CF Trust is concerned that the criteria used to assess whether a lung is safe and to designate “extended criteria lungs” may not reflect current scientific knowledge because those criteria were mainly developed 30 years ago and need bringing up to date. The trust’s report accordingly calls for a
“renewed focus on understanding what lungs are suitable for transplant”
and for more transplant surgeons to be trained in downsizing donor lungs. As the hon. Gentleman said, only three people are trained to do that. Downsizing is particularly important for CF patients, as the hon. Gentleman also said, because they tend to be smaller than usual and cannot necessarily cope with average-sized lungs.
Techniques such as ex-vivo lung perfusion could be used to assess and potentially repair sub-optimal lungs. I understand it is still experimental at this stage, but the CF Trust reports that researchers suggest it could improve transplant rates by up to 30%.
The hon. Gentleman has obviously been well briefed by the CF Trust—I was listening to him, thinking, “Okay, cross those bits out”—so I will not go into too much detail about the national lung allocation system. However, as he said, lungs are allocated to the nearest transplant centre, which will assess the patients on its own list for the most suitable match. That would apply even if there were a patient in more urgent need on another transplant centre’s waiting list.
This year, NHS Blood and Transplant has developed a super-urgent group—some people will be considered a national priority and will be able to receive compatible lungs from anywhere in the UK. However, the CF Trust is keen for the measure to be rolled out and used anywhere. Of course, it is quite difficult to assess who is the most urgent case, but the issue needs to be looked at. As the hon. Gentleman said, there is already a similar system for heart transplants.
Jason McCartney (Colne Valley) (Con)
I, too, work closely with the Cystic Fibrosis Trust here in Parliament. I have hosted a number of events and have met people who have had lung transplants. The hon. Lady is right to highlight the UK’s average waiting time of 412 days, one of the highest in Europe. I lend my support to the CF Trust’s idea of a national lung allocation system, which could be a big step forward in reducing that waiting time and could make the use of those organs a lot more effective.
Kerry McCarthy
I understand that the hon. Gentleman chairs the all-party group on cystic fibrosis. I am grateful for his support.
My final point is about the importance of psychosocial support for patients preparing for and recovering from a lung transplant. It can be a stressful process, yet support is not commissioned as a demand-led service. The fact that lung transplants have been cancelled because patients did not feel psychologically prepared or able to go through with them, despite all the desperate waiting, indicates that more consideration needs to be given to psychological support and a more holistic approach to the whole process.
I hope today’s debate has underlined the need for a more joined-up approach across the board to improve organ donation. The issue is not just about registration and donation rates; it is also about innovation, to improve the availability and allocation of donor lungs. I look forward to the Minister’s response.
Glyn Davies (Montgomeryshire) (Con)
I am sorry that I did not give you prior notice that I wanted to speak, Mrs Osborne. Although this is an important issue to me, I did not realise that it was on the agenda and I am grateful for the opportunity to speak. I congratulate the hon. Member for Strangford (Jim Shannon) on introducing the debate. I agreed with a substantial part of his speech, although not all of it. I will come to that point later.
Organ donation and transplantation is one of the most important developments in modern medical science, enabling treatment of patients with failing and damaged organs. Huge advances in transplant surgery and immunosuppression have enabled great advances to be made. Hearts, kidneys, livers, lungs, pancreases, and other organs, are successfully transplanted, but the demand continues to grow. Medical science is enabling more transplantation and we are living longer, but still about 500 people die every year while waiting. We always have to be looking for ways of increasing the levels of donation and transplantation.
My interest in the subject stems from a friend of mine receiving one of the early heart and lung transplants at Papworth, probably about 25 years ago. It was phenomenal at the time, but since then it has become much more common and is more accepted. I have had an interest since that time and that has developed in terms of promoting support for those suffering from kidney disease in my constituency, for example, with the development of a dialysis unit, and it continues here. I am also a trustee of Kidney Foundation Wales, a wonderful organisation promoting transplantation in Wales, although I disagree with it about presumed consent. I have always been disappointed in that regard and somehow feel isolated, because all the other trustees of Kidney Foundation Wales favour a change to presumed consent, which is now a new Welsh law. However, I am implacably opposed to it, because I just do not believe it will work. I will come to that point later, as one of the two points that I want to make today.
We all want to increase the level of organ donation—that is, all those in favour of presumed consent and all those in favour of continuing with informed consent. Providing new life to a fellow citizen is undoubtedly the greatest gift that any of us can give. I have spoken on this issue several times before, but there are two new issues to consider that I want to mention.
First, I emphasise how much amazing success we have had in promoting organ donation. We all owe a debt to the right hon. Member for Kirkcaldy and Cowdenbeath (Mr Brown), who established the organ donation taskforce—in 2005, I think—under the chairmanship of Elisabeth Buggins, an outstanding leader in this debate. That taskforce produced a report in 2008, with a target of increasing organ donation by 50% over five years. That target was met last year. However, it does not stop there. The latest figures show that, after six years, there has been a 63% increase, and it is still rising. We have seen a phenomenal increase as a result of the organ donation taskforce’s recommendations, which did not include presumed consent; in fact, it said that that was not a recommendation. It recommended an increase in the number of intensive care beds and specialist nurses, copying what had happened in Spain, which had delivered great success there in increasing organ donation. It is important to recognise that we can continue to build on the great success that we have achieved.
Secondly, I am disappointed that the British Medical Association takes a different view from me, supporting the introduction of presumed consent. However, it decided to do that on the basis of a show of hands at a conference meeting, and it was the quality of the speakers in the debate that led to that decision. Its decision was not based on a comprehensive report, like that of the organ donation taskforce; it was just a show of hands.
The point that I really wanted to make in contributing to this debate, because it is important and supports my view that no self-respecting surgeon would remove a patient’s organs without the support of their next of kin, is that the Royal College of Surgeons has in recent weeks withdrawn its support for the BMA’s position. The Royal College of Surgeons said:
“Evidence from these countries demonstrates that investment in public awareness campaigns and infrastructure that supports transplantation services, such as the availability of intensive care beds and number of specialist nurses in organ donation, can substantially increase organ donation.”
That is key. It continued:
“It is therefore of profound importance that investment in these areas is increased to support organ donation.”
It also said that
“we believe that there is insufficient evidence that an opt-in or opt-out system increases rates of organ donation. We consider the issue to be a matter for personal ethical and philosophical deliberation. We believe that to improve organ donation rates it is vital that investment in public awareness campaigns and infrastructure that supports transplantation services is increased.”
That is the key point on which I want to finish. There is no evidence that moving to an opt-out or presumed consent system will deliver any more organs. The Welsh Government incessantly repeat that it will, which is why popular support is seen when people are asked about the system. Clearly, if people are told again and again by the Government that the system will increase the number of organs, they will say that they support it. If I believed that it would increase the number of organs, I would support it, but I do not, because it simply will not do that. An important point to remember is that we need to invest in those things that work.
Jim Shannon
In my introduction, I referred to three countries that have shown that the soft opt-out option was successful: Belgium, Croatia and Norway. There is evidence and, with respect, the hon. Gentleman cannot deny that.
Glyn Davies
I have not studied the situation in Norway, but for many years the example in this debate was always Spain. Spain was the great success story, and it is indeed the best performer in the world. The Welsh Government have recently claimed Spain to be a presumed consent country. The reality is that the law was passed in 1979 and was effectively not followed. It was abandoned in 1980 and remains on the statute book, but it has never been activated. Ten years later, Spain introduced the changes recommended by the organ donation taskforce and had spectacular success. As a nation—I hope the Minister will say that we will carry on doing this—we need to continue doing what we have done, which has produced success: focusing on intensive care beds, specialist nurses and the example that the hon. Member for Bristol East (Kerry McCarthy) mentioned of people telling their next of kin. If all families knew, we could raise the consent rate, perhaps by 20%, to the levels that Spain sees, and we would deliver all the organs we need. The key is people telling their next of kin, so that their next of kin know what they desire. Far more transplants would be carried out and more people suffering would live.
Mrs Madeleine Moon (Bridgend) (Lab)
I well remember watching the television as a child in 1967, hearing the news of Dr Christiaan Barnard’s first heart transplant and being absolutely amazed. It seemed like something out of a science fiction book, yet we have moved in a relatively short space of time so much further forward. The one area, however, where we have not moved forward is public recognition of the essential part they have to play in donating a life. We have to raise awareness of that and of transplantation’s possibility and viability. Government and surgeons can only do so much; the public are the vital missing component.
We have, as has been said, a large percentage of public buy-in to the concept of transplantation. Some 97% agree with it, but only 30% carry donor cards. I follow the hon. Member for Montgomeryshire (Glyn Davies), and he and I co-chair the all-party kidney group. That statistic is important, since those awaiting a kidney are the largest group of people requiring a transplant. Some 5,640 people are awaiting transplants. Since April this year, 457 people have received kidneys from deceased donors and 158 have received kidneys from living donors. Those who are still waiting and their families and friends are deeply worried that a donor will not be found in time. In the meantime, they face kidney dialysis, which is a lifesaving but traumatic event. For many, it happens three or four times a week, and their life is on hold.
I disagree with the hon. Gentleman on the initiative taking place in Wales. People frequently say things are half the size of Wales or have twice the population of Wales. We are always used as a measure, but I have long felt that we are a nation of 3 million people that has huge potential for trying new ideas and huge opportunities for breaking new ground. In Wales, 56 people were donors in 2012-13, enabling 211 organ transplants to take place. Some 200 people are on the waiting list in Wales. We have to look at anything that makes a difference. We are a small country and we have to be creative.
The Human Transplantation (Wales) Act 2013 comes into effect on 1 December 2015. Will it make a difference? It provides an opportunity to learn a lesson, not just for Wales, but for the whole of the United Kingdom and, hopefully, the whole European Union and the whole world. I held a debate in Archbishop McGrath, which is one of my local Catholic schools, and the students chose the subject. They wanted to debate it. As young people, they felt that the issue affected them. What was interesting was that over and over again, issues came up where we have to be up front politically and enter into the debate. There was a fear about harvesting and people being allowed to die because surgeons wanted their organs. They were shocked to find, when they did their research, that in reality someone has to die to be an organ donor, in the right way, at the right pace and in the right place at the right time. The best place to be an organ donor—or the worst place, depending how one looks at it—is a high dependency unit, because there is an idea of when someone will die and there can be time to find the person who needs to receive the organs, an available surgeon and an operating theatre.
I reiterate the issues raised by my hon. Friend the Member for Bristol East (Kerry McCarthy) on psychological preparedness, which we do not highlight enough. There is huge stress and strain on people waiting for an organ. Sometimes, when the day arrives, they cannot face it. They feel terror at the change in their life. People have minutes in which to respond, and we should not underestimate how traumatic that can be, or how traumatic survivor guilt can be, whether that is for the person who died so they can live or for those still on the waiting list. The person taken off the list has a chance to live, while others were turned down.
I will briefly talk about some constituents. Jean Schofield gave her kidney for her son, Mark, who has now had three transplants. It is not necessarily just one transplant that is needed; some people need a lot more. Her fear and anxiety over her son has made her a driven fundraiser. She is an absolutely amazing example of how people can give their energies to organ donation and to fundraising for research and support for those who suffer.
Katy Lloyd, who is 24 and from Bridgend, has cystic fibrosis, which was identified when she was four months old. I cannot begin to understand what her family must have lived with knowing that she would eventually need a double lung transplant. The tension and fear experienced by her parents every time she had a cold or fell ill must have been horrific. Following her transplant, Katy said, “I didn’t think about it. It was all I’d ever known.” Imagine if all you had ever known was that one day you would need to face such an operation and that your life was on hold. She has made a fantastic recovery and is a great example of the difference that an organ transplant can make.
Judith French, a great friend of mine, has polycystic kidney disease. Polycystic kidneys cannot be removed during transplants and continue to grow. She was unable to leave the house and had a frequent, urgent need to be near a bathroom. The transplant was wonderful, but she still has large and growing polycystic kidneys, which is like carrying around a big bag of potatoes. She has high blood pressure, a swollen stomach and back problems, but she was refused access to benefits because she had had her transplant. We must consider how the benefits system recognises that transplants do not necessarily end the difficulties that some patients face and that they may still need support.
Andy Eddy, whom I recently met at an all-party group meeting, is 48 and married with two children aged 11 and 13. He was a practising solicitor and was advised to have a hepatitis C injection. An unknown genetic defect meant that the inoculation—a positive step to protect his health—actually led to the destruction of his liver. He had liver disease and liver failure and faced a long, horrific wait on the transplant list while his health declined. His life has been turned around following his transplant. He joined the British transplant games as a volunteer, winning one silver and three bronze medals, and is now chair of Transplant Sport. I have written to the Minister about the games, because they should be held at the same time as national transplant week, because they help to show the difference that can be made by a donation. Someone can be taken from death’s door to athlete. That is how big the change can be and that is what we must ensure that people understand.
Finally, it is vital that we get the message out about the need for conversations about one’s wish to be a donor. Talk to your family today about what you want. My husband has a motor neurone condition called Pick’s disease and I have power of attorney over his health. We went to see a consultant, who asked me, “On death, would you be willing for your husband’s brain to be donated for medical research?” I can still feel the shock at being asked that question. I said, “My husband still has the capability to make that decision. I want him to make it.” He said, “I want to do it.” I cannot imagine having that conversation at the point of his death. Such conversations must happen now while people are fit and healthy and they must be stark and serious. That is what I want to come out of today’s debate. I want families around Britain to be having those conversations, so we do not get refusals when people are carrying donor cards.
Kate Green (Stretford and Urmston) (Lab)
It is a pleasure to see you in the Chair this morning, Mrs Osborne. I thank the Backbench Business Committee for finding time for this debate during national transplant week. I also thank my hon. Friend—if I may call him that—the Member for Strangford (Jim Shannon) who went to the trouble of taking the proposal to the Committee. It has been really good to hear so many powerful speeches this morning, in particular that of my hon. Friend the Member for Bridgend (Mrs Moon), who moves me every time she talks about what is happening to her and her husband. It is incredibly brave to talk about such things publicly. For people paying attention to this debate, what she said will have brought home why they must talk to their families tonight about being an organ donor not only so that they will know their wishes, but also to inspire other family members and friends to join the register. We must remember that being on the register does not mean that just one life could be saved; up to nine lives could be saved or improved. Being an organ donor is an incredibly good, generous, human thing. If we can achieve one thing from today, I hope that more people will confidently register as donors and that families will give their consent to organs being donated at what are difficult and traumatic times.
The progress that we have made in increasing the number of registered donors is great. I was grateful for the tribute paid by the hon. Member for Montgomeryshire (Glyn Davies) to my right hon. Friend the Member for Kirkcaldy and Cowdenbeath (Mr Brown), who has a family interest in the matter. It is particularly powerful when hon. Members’ personal circumstances inform our debates and policy decisions. However, one under-represented group on the donor register is families from certain ethnic minority communities, which is a big issue in my ethnically diverse constituency. What steps are the Minister and NHS Blood and Transplant taking to increase donation rates among minority communities, because their need for donations is as great as any other?
I want to talk specifically today about lung transplantation, which I have discussed before not least because I was introduced to the issue by a constituent of mine, Natalie McCusker, who received a double lung transplant at Wythenshawe hospital last year. As did other hon. Members, I want to thank the Cystic Fibrosis Trust for the helpful briefing and support given for today’s debate and more generally. I also welcome the progress made since my Adjournment debate on the subject almost exactly a year ago when I talked specifically about the problems with the allocation system and how certain parts of the country, including my region of the north-west, were losing out. It is not just that in comparison with other European countries the UK performs less well; within the UK some zones do much better than others. The north-west is one zone where people have a particularly long wait for lung transplants. I welcome the allocation of super-urgent cases on a national basis and the annual review of the size of zones, which are both good steps forward.
There is, however, scope to do more. We could look at extending national allocation to all super-urgent cases and then perhaps to urgent cases. In due course, we could run the whole country on a national allocation basis. I realise that NHSBT and the Minister will want to examine carefully the possible consequences for patient outcomes, but can she assure us that the proposal remains under live and active consideration? International evidence suggests that a national allocation system could produce as good if not better outcomes. When we are so far down the European league table, it is right to consider what we might learn from other countries.
I am also pleased that NHSBT has reissued some of the guidance relating to transplantation, in particular guidance on the difficult transition from child patient to adult patient, which was exactly the situation that my constituent Natalie found herself in. She was initially being treated at Great Ormond Street hospital, but when it became likely that she would need a transplant, she was coming up to her 16th birthday and so had to transfer to the adult list and effectively lost about a year in terms of her being deemed ready to receive a transplant. I understand that improvements have been made in the guidance on handling that transition. I will be grateful for any update that the Minister can give us.
Supply of organs has been discussed by other hon. Members this morning. There have been important and welcome developments on resizing, which is especially important for children, women and CF patients, who are likely to be of smaller stature. Colleagues also pointed out, however, that only a tiny handful of doctors are able to carry out the resizing operation. What steps are being taken to extend that capacity?
Similarly, what about extending the criteria for usable lungs, which is clearly a sensitive issue? Patients’ own wishes and—I do not say the word in a pejorative sense—prejudices have to be taken into account. As the hon. Member for Strangford said, however, international research suggests considerable potential for more marginal lungs to be reusable, while differentiation between different transplant centres even within the UK is apparent. Harefield is doing particularly well, perhaps showing the way.
Will the Minister update us on what is being done to assess the evidence further on extending criteria and revising guidance? Will she also tell us what is being done about looking at the very different rejection rates in the different centres around the country? That is of particular importance when we are stuck with the zoning system, which means that people may be forced to go to a centre where rejection rates are much higher than if they were in treatment elsewhere.
Like the hon. Member for Strangford, I shall comment on some of the other techniques being developed. For example, the ECMO technique is highly specialist, as he said, and it is clearly appropriate, not in all, but in some circumstances. It will be useful to hear what work is being done to provide detailed guidance.
In particular, I wanted to raise an issue that has not yet come up this morning, which is funding for transplantation. There is no use doing what we are doing so successfully to increase the number of donors and to improve the usability of lungs and the techniques that mean more transplants can be carried out because the surgery and the science are there to enable them, if we have not in parallel put in place the funding to ensure that we can pay for an increased number of transplants. The national commissioning team understood well that the funding models had to be designed and progressed alongside and in parallel with the science, the improving clinical strategies and the successful public registration and awareness campaign.
Other interventions, however, are now competing with transplants for funding, while the specialist services budget, which funds transplants, is under pressure and might even face cuts. At the same time, commissioning is moving to local area teams, which will not have the same understanding of some of the decisions that need to be made on transplantation priorities, which risks us moving to an unco-ordinated approach and widening inequality of outcome between centres.
Transplantation risks becoming underfunded even as the numbers that can be treated are on the rise. We have already seen a significant increase in the number of transplants carried out in recent years, and that will increase further as allocation methods improve, donation rates increase and technology allows more lungs to be used. It would be an absolute crying shame if the strides forward in good practice were stymied by a lack of resource or by a commissioning model that cannot optimise the clinical progress and the public engagement being made.
I am, like others, pleased that we have had the opportunity to explore the subject this morning. I look forward to hearing the Minister’s response.
Luciana Berger (Liverpool, Wavertree) (Lab/Co-op)
It is always a pleasure to serve under your chairmanship, Mrs Osborne.
I thank the hon. Member for Strangford (Jim Shannon) for a debate on such an important issue. In his opening remarks, he alluded to others who have encouraged him, so I thank them, too, and the Backbench Business Committee for granting the debate. I thank all hon. Members who have contributed; they have shared their personal connection and the case studies of their affected constituents. Our discussion today is most timely, given that we are in the midst of national transplant week.
Sixty years ago this year, the world’s first successful kidney transplant was performed by Dr Joseph Murray in Boston, Massachusetts. Dr Murray broke new ground when he and his team transplanted a kidney from Ronald Herrick to his dying twin brother, Richard, which saved his life. Today, kidneys are the organ most commonly transplanted, with about 2,000 transplants each year in the UK.
Organ donation is without doubt one of the great success stories of the latter half of the 20th century. This debate and national transplant week provide the opportunity to celebrate such fantastic achievements, to debate the challenges facing organ transplantation and to increase awareness of organ donation. It is welcome to see so many hon. Members showing their support for the campaign.
Over the past century, organ transplantation has overcome some major technical limitations to become the success that it is today. Breakthroughs include developing surgical techniques to manage the immune response and devising preservation solutions to enable prolonged periods of ex vivo storage. The results of organ transplantation continue to improve as a consequence of such innovations and of improvements in peri-operative and post-operative management.
Major progress has been made with the infrastructure and organisation of organ donation, which has led to a significant increase in donation rates. I am extremely proud of the fact that, in 2001, the previous Government said that we would double the number of donors from 8 million to 16 million by 2010; we achieved that a year early, in 2009. The 19.7 million of us on the NHS organ donor register are testament to the changes made at every level—from hospitals to the critical care and emergency department staff committed to donation. Most of all, there is the generosity of donors and their families.
Despite all those astounding achievements, many challenges persist, most notably the shortage of suitable donor organs. We know that the number of potential donors is declining because people are living longer and fewer are dying in hospitals in circumstances where they could donate. Every year in the UK, about 1,200 people die after death has been diagnosed on neurological criteria, with a further 3,000 people dying after the withdrawal of treatment in circumstances where donation is possible.
The hon. Member for Romsey and Southampton North (Caroline Nokes) highlighted the particular challenge of finding suitable child and infant donors. That makes it more critical than ever to increase the pool of willing donors and to encourage more people to join the NHS organ donor register, which includes engaging with parents to consider the gift of life at a time of child death tragedy.
As many Members have said, market research carried out by NHS Blood and Transplant highlights that, although 51% of the population definitely want to donate their organs and 31% said that they would consider it, only 31% have actually signed the register. Twenty years on from the launch of the NHS organ donor register, people may sign up in many ways, such as through an online form, a 24-hour donor line, a text message, the GP or even a driving licence application. I did so when I signed up for my Boots advantage card. Surely even more mechanisms could be used to sign people up—the hon. Member for Strangford mentioned a debate we had on the issue only a few weeks ago, when I suggested supermarket cards. What more could we be doing to encourage people, particularly young people?
A current campaign, led by the Anthony Nolan trust, goes into schools to encourage 16 to 18-year-olds to consider signing up to the bone marrow register. What more could we be doing across all schools?
Jason McCartney
The hon. Lady has just raised the campaign by the Anthony Nolan bone marrow trust—it is called Register and Be a Lifesaver. As the hon. Member for Stretford and Urmston (Kate Green) pointed out, there is still an issue when it comes to different ethnic backgrounds. As the bone marrow register has been mentioned, I want to point out that northern Europeans have a 90% chance of finding a bone marrow donor, but that figure falls to just 40% for people from black, Asian and minority ethnic backgrounds.
Luciana Berger
I was just about to come to the specific challenges of regional differences and of people from different communities having access to organs. To finish my point about the important campaign by the Anthony Nolan trust, as part of that campaign the organisation wrote to all MPs to encourage us to write to schools in our constituencies to inform them about the opportunity to have the Anthony Nolan trust come in and inform 16 to 18-year-olds about the chance to be a life saver. I want to put on the record that I strongly encourage other Members to write that letter if they have not already done so—I sent mine off only last week—because it is something that we can do as MPs to encourage people locally to get involved.
In response to the hon. Gentleman’s point about specific communities, the challenge, as we have heard from a number of Members, is not simply getting more sign-ups to the register but targeting specific communities and areas that we know are losing out from the stark inequalities in our system. In the north-west, for example, where my constituency is situated, patients are waiting longest for a transplant and we have the highest death rate among those who are waiting: 62.2% of patients in the north-west wait more than six months for a transplant, compared with an average for England of 47.3%. Some 23.2% of patients in the north-west have waited more than 18 months for a lung transplant, compared with an average for England of 15.8%. We need to take regional differences into account.
Many Members have referred to lung donation. My hon. Friend the Member for Bristol East (Kerry McCarthy) referred to the zonal lung allocation system, an important issue that I will focus on in more detail. The Cystic Fibrosis Trust has raised legitimate concerns about that system and is concerned about equity in lung allocation.
Currently the allocation of lungs to transplant centres operates on a rota system. When a donor becomes available, the organs are offered to the closest transplant centre if a matching recipient has been identified. If no suitable candidate is found, the organs are then offered to the next centre, as per the pre-agreed rota. The likelihood of getting a lung transplant and the time frame for the procedure will therefore vary according to where an individual is listed. A donated organ will not currently always reach the candidate most in need anywhere in the country. Will the Minister give her view on the zonal lung allocation system? Does she have any plans to develop a more needs-based system?
It is not just where someone lives that can affect their chance of having a transplant operation if they need one. People from BAME communities are up to three times more likely to need a transplant than others, yet, because organ matching is likely to be closer when the ethnicity of the donor and the recipient are the same, they have to wait much longer. For example, on average a person from a BAME community will wait a whole year longer for a kidney transplant than other patients.
The #Spit4Mum campaign to find suitable stem cell donors for a woman called Sharon Berger—I am not related to her—highlighted the specific challenge of finding suitable donors for members of the Ashkenazi Jewish community. I am a member of that community and I have done my bit to contribute to that specific campaign. But we know that there are many different ethnic minority communities that struggle to find donors of organs and stem cells.
Such inequalities are not acceptable. We cannot accept that some of our citizens will be far more likely to die than others because of where they live or their ethnic background. Will the Minister address that point specifically and outline what concerted action the Government will be taking to tackle it?
Many Members on both sides have raised their concerns about what more we can do to support families in honouring the wishes of their loved ones. It is very difficult when someone passes away, but we know that in 2011-12, 125 families overruled an individual’s intention as recorded on the NHS organ donor register to become an organ donor. Many people do not realise that if they have not made their donation decision clear, their family could be asked to agree to a donation taking place. Nobody wants to leave their family with such a burden, so it is vital that we encourage and support families in having those conversations earlier. The theme of the current national transplant week is “Spell it out”. Will the Minister outline what she is doing to promote that message further? There is a great disparity between those people who sign up and share their intentions with their families and those who do not, and there can then be issues with vetoing.
I will touch briefly on the issue of the opt-out or presumed consent system, which was raised both by my hon. Friend the Member for Bridgend (Mrs Moon) and by the hon. Member for Montgomeryshire (Glyn Davies). There are many obvious advantages to the system. I return to the point I made earlier: there is a gap between the 51% of the population who definitely want to donate their organs, the 31% who would encourage it and the 31% who have actually signed the register. The system will be introduced in Wales in 2015. Any change in legislation will need to take into account the impact of the system in Wales and must have the backing of the public. What consideration is the Minister giving to learning from the introduction of the system in Wales and to introducing a similar system in England?
Sandra Osborne (in the Chair)
Order. I am sorry to interrupt the hon. Lady, but I ask her to be mindful of the fact that the Minister has many points to answer in the debate.
Luciana Berger
My hon. Friend the Member for Bristol East referred to the international comparison that suggests that there is room for improvement in ensuring that we are making the most of donor organs. The Cystic Fibrosis Trust has pointed out that a large number of donor lungs are never used, despite consent from the next of kin. Lungs from fewer than 25% of brain-dead donors are utilised in clinical transplantation. The need for suitable organs must be balanced against possible risks to the recipient, such as transplanting an organ that does not work properly or transmitting a serious disease from donor to recipient. However, I echo the concerns raised by my hon. Friend the Member for Stretford and Urmston (Kate Green) on donor lungs: there are clinically viable lungs within the 75% that are not used and more can be done to address the issue.
Anxiety over the likely function of an organ largely explains why it is only in a minority of cases that all possible solid organs are used. The Government strategy for organ donation and transplantation, published last year, highlighted that sometimes actions that could be taken to improve the function of a retrievable organ are not taken and the organ is declined. On other occasions, organs declined on the grounds of poor function should have been accepted and implanted. What steps are the Government taking to ensure that we are using as many donor organs as possible? I also echo and reinforce the points made and questions raised about supporting patients who are waiting for organs to ensure that, when the time comes, they are psychologically prepared.
This issue is important to all Members, across the political divide. Anyone in this room could one day need an organ donation or have a loved one who does. We are making progress but we must maintain our momentum. I welcome the Government strategy for organ donation and transplantation set out last year. I am happy to work with the Minister and do all I can to promote efforts to improve organ donation and transplantation, to ensure that anyone who needs an organ transplant has one. I look forward to the Minister’s response.
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.