Organ Donation: Opt-out System

Geoffrey Robinson Excerpts

Thursday 13th July 2017 Westminster Hall

[Dan Jarvis (Barnsley Central) (Lab)]

I beg to move,

That this House has considered the matter of the introduction of an opt-out system for organ donation in England.

It is a pleasure to serve under your chairship, Ms Buck. I want to begin by sharing with the House my reasons for tabling my debate and by telling the stories of Max Johnson and Joe Dale. Yesterday, I had the privilege of meeting Emma and Harry Johnson—Max Johnson’s mother and brother. Max is nine years old and has cardiomyopathy—a condition that enlarges the heart and can be life-threatening if left untreated. Max is kept alive by a tiny metal pump in his chest, and has been waiting for a heart transplant for six months. He is one of 6,388 people in the UK waiting for an organ donation. Last year, 457 people died while still waiting.

Joe Dale was a constituent of mine. He died last month after a sudden asthma attack, which caused devastating brain damage. He was just 16 years old. After his death, his family made the selfless decision to donate some of his organs so others might have the chance to live. Because of their decision, Joe became one of the hundreds of deceased donors who save and improve lives every year in the UK. I know that right hon. and hon. Members will want to take the opportunity to join with me in passing our condolences to Joe’s family and giving our thanks for their brave determination to help others in spite of their personal tragedy.

The stories of Joe and Max, the work of my hon. Friend the Member for Newport West (Paul Flynn) and the very important Daily Mirror campaign have re-energised my long-held belief that as a country, as politicians and as a legislature we can do more to help those in need of organ transplants.

[Mr Geoffrey Robinson (Coventry North West) (Lab)]

I will be very brief. My hon. Friend mentioned the Daily Mirror campaign and the private Member’s Bill introduced by my hon. Friend the Member for Newport West (Paul Flynn) and other supporters, which failed due to the prorogation of Parliament and the general election. Luckily, I have position No. 6 in the ballot, and I want to inform my hon. Friend the Member for Barnsley Central (Dan Jarvis)—I compliment him most sincerely on conducting today’s debate—that I intend to reintroduce the Bill pretty much as it stands. I will be presenting it next Wednesday in the House of Commons, and I hope I can count on my hon. Friends’ support. That also applies to the hon. Member for Strangford (Jim Shannon).

[Dan Jarvis]

I join my hon. Friend in paying tribute to the Daily Mirror, which ran a very important campaign for some time, and thanking it for the work it has done. I also thank him for confirming, I think for the first time, that he intends to use his private Member’s Bill as an opportunity to introduce a legislative mechanism for the Government to change the law in England, should they wish to use it. I hope that will provide a forum where this matter can be further debated constructively in Parliament. I am very grateful to him for taking that decision, and I look forward to supporting his Bill and working with him and, I hope, the Government to make it a great success.

Four hundred and fifty seven unnecessary deaths a year is too many, and I believe it is our duty to reduce that number and save the lives of people such as Max. By changing the law to an opt-out rather than an opt-in system we in Parliament can do that.

The truth is that there is a common misconception about how organ donation works. Only a very small number of people die in a way that allows for organ donation. The vast majority of people on the organ donor register will never actually donate their organs. The figures are startling: about half a million people die every year in the UK, yet last year, out of that half a million, only 5,681 people died in circumstances that made donation possible—about 1%. Although there are hundreds of thousands of people across the country who are registered as potential donors, only a handful will ever be in a situation that allows donation to take place. The reality is that there are simply not enough registered organ donors. People in the UK—specifically in England—are dying as a result.

Accompanying those alarming facts are some more positive recent statistics, as reported in this week’s “Organ Donation and Transplantation Activity Report for 2016-17”. Last year, there was a 4% increase in the number of deceased donors to 1,413—the highest number ever in the UK. Coupled with more than 1,000 living donors, that has resulted in 4,753 life-transforming transplants this year—a 3% rise from last year. The number of patients whose lives were saved or improved by an organ transplant has increased by 3% to 4,753. All that means that more than 50,000 people are alive today thanks to a transplant.

The “Organ Donation and Transplantation Activity Report” is a good news story, but I believe we can make it an even better news story. Behind every statistic there are people, and, as Lorna Mason and Gary Masterson wrote this week in the annual transplant activity report:

“Every transplant is the result of a complex collaboration between donors and their families, a host of clinicians working in different parts of the NHS and finally in transplant recipients and their family.”

They went on to say that

“opportunities for donation continue to be missed...While we cannot quantify every missed opportunity precisely, we need to work collaboratively to make sure that these are as few as possible.”

Despite the excellent campaign run by the NHS to encourage organ donation—details of which can be found at www.organdonation.nhs.uk—the UK still has one of the lowest rates of consent in Europe for organ donation.

The “Taking Organ Transplantation to 2020” strategy, published in 2013, set the target of increasing the donation consent rate from 57% to 80% by 2020, in line with the better-performing countries in the world. That is the rate at which families who are approached by NHS Blood and Transplant actually go on to become donors afterwards. Although the consent rate has increased to 63%, it is still too far below this year’s target of 70% and the 2020 target of 80%. Now is the time for us to do something about that.

I believe that the best way for us to increase the number of lives saved through organ donation is to adopt the so-called opt-out system—sometimes known as a system of deemed consent. Under the current law in England there is an opt-in system of organ donation. In other words, people must proactively state that on their death they would like their organs to be donated to someone else. And yet surveys consistently show that there are many more people who would like their organs to be donated when they die, but they are not registered. Polling conducted by the British Medical Association supports this and has shown that 66% of people in England would donate their organs after death, but only 39% have signed the organ donor register. That means millions of people here in England are willing to donate their organs, but are not registered to do so.

I am sure we all understand that people lead busy lives and that organ donation is not something most people think about on a day-to-day basis, but the reliance of the opt-in system on our not only thinking about it but finding the time to sign up is reducing the number of organs available and the number of lives saved. That is why many other countries use a different system.

Wales has had an opt-out system since December 2015 and only last month the Scottish Government announced plans for a similar system of organ donation in Scotland. In a statement, the Scottish Health Minister said:

“Moving to an opt-out system of organ and tissue donation will be part of the long-term cultural change in attitudes to encourage people to support donation.”

That view is increasingly shared by countries around the world and by many of our European neighbours such as Austria, Belgium and Spain, which all use variations of the opt-out model. It is time that we in England joined them, modelling our system on that in Wales where they offer three clear options: first, to register someone’s wish to be a donor by opting in to the system; secondly, to register their wish not to be a donor by opting out; and thirdly, to have their consent to donation deemed by taking no action.

It was argued when the law was passed that the availability of the three options would increase the number of organs available for donation, and that that in turn would save lives. I am pleased to say that the evidence from Wales suggests that such assertions were correct and that the new law is working. Indeed, the potential pool of organ donors has almost trebled since 2014-15, and the opt-out system does not appear to have deterred individuals from proactively opting in. It is right, of course, that we strike a note of caution with that data, but the initial signs are encouraging.

I now want to address some of the concerns that people have about an opt-out system of donation. This is undoubtedly an emotive issue and there are strong feelings on both sides of the debate. I would not want to question anybody’s motives in deciding whether they wish to be a donor. It is, after all, a deeply personal matter. Under an opt-out system, people would not be required to give a reason for choosing not to be a donor, as the system is not about trying to shame people into becoming donors. Also, similar to what is happening in Wales, any new law would need to be accompanied by an active public awareness campaign: first, to ensure that people understand the new system; secondly, to encourage more people to make the positive decision to become an organ donor; and thirdly, to give people who may want to opt out the information they need to do so.

1 understand that some people have concerns that an opt-out process raises the risk that a person will have their organs taken against their will and against their families’ wishes, which in turn could cause unnecessary distress to the families of the deceased. I also understand that such concerns may be more prevalent within some ethnic and religious groups and that some members of our Muslim and Jewish communities have different interpretations of the religious legitimacy of deceased donation. I completely get that. I understand their views and have the utmost respect and sympathy for them. However, I firmly and wholeheartedly believe that not only do the benefits of an opt-out system far outweigh the risks, but that the risks can be mitigated through a public awareness campaign tailored to different ethnic and religious communities and through the use of in-hospital safeguarding measures. Any new system would have to ensure there were safeguards in place to ensure that no one’s organs were donated against their wishes; that the opt-out system applied only to those over the age of 18; and that for those under 18 it continued to be the case, as it was with my constituent Joe Dale, that the family have the final decision, because it is vital that nobody feels as though they are being coerced.

I also accept that changing the law is not the only change we need to make. It would need to be part of a wider package of measures to increase organ donation. We need to redouble our commitment to the “Taking Organ Transplantation to 2020” goal of increasing the consent rate to 80%, and to consider carefully whether the strategy needs strengthening in the light of the progress so far.

The evidence from Wales and from countries across Europe gives us the confidence to say that an opt-out system would be an important step forward. For that reason, I very much hope that we can proceed on a cross-party basis. I respect anyone who takes a different view on an issue of conscience such as this, but it is clear that the principle of deemed consent has support from Members of all parties across the House.

The Health Secretary recently told the House that an opt-out system has “a lot of merit”. Only yesterday at Prime Minister’s questions, the First Secretary of State told me that

“organ donation is clearly a hugely important part of our system, and the Department of Health is looking at the impact of those changes to see if those can give rise to further improvements in the number of available organs.”—[Official Report, 12 July 2017; Vol. 627, c. 290.]

I welcome such statements because I know that an opt-out system has merit. When the Parliamentary Under-Secretary of Health, the hon Member for Thurrock (Jackie Doyle-Price), winds up the debate, will she tell us what work is taking place in her Department and when it will report?

Before I conclude, I want to take a moment to say how much my hon. Friend the Member for Sunderland Central (Julie Elliott) wanted to be here today. About a year ago, her daughter, Rebecca, a fit young marathon-running mother of one, had blood tests that indicated kidney failure. Three weeks ago she had surgery at the Freeman Hospital in Newcastle to enable her to start dialysis. Today, she joins the 6,000 other people on a waiting list for an organ donation. The average wait for a kidney on the transplant list is two years. I know that all hon. Members will want to join me in wishing Julie, Rebecca and their entire family all the very best. Also, I want to take this opportunity to thank charities such as Kidney Care UK for their work. Because of these stories we should move forward as quickly as possible; children such as Max and mothers such as Rebecca do not have the luxury of time to wait. Anything that we can do to help them get a new organ is a step worth taking so that they can join the thousands of people in our country who have benefited from organ donation.

We have a duty of care to those in our society who need help, and that includes those who need transplants. We can and must do more to help them. We cannot save the 457 lives lost last year, but who knows how many we could save in future? As an old friend once told me, “The best time to plant a tree was 20 years ago. The second best time is now.” I very much hope that the Government will act.