Below is the text of the speech made by Dan Jarvis, the Labour MP for Barnsley Central, in the House of Commons on 19 May 2020.
Thank you, Mr Deputy Speaker. It is a pleasure to be called in this debate—and hopefully to be heard.
From tomorrow, as we have heard, changes to the organ donation system following the implementation of the Organ Donation (Deemed Consent) Act 2019, more commonly known as Max and Keira’s law, come into effect. This means that every adult in England will be considered to be a donor unless they opt out or are excluded. This new law has the potential to save hundreds of lives every year. For all those desperately waiting for a transplant, the efficacy of these changes is literally a matter of life and death. We owe it to them to ensure that it is a success.
I would like briefly to pay tribute to the constructive spirit in which the Government approached the Bill from the outset, and to all those without whom the campaign to change the law would not have succeeded. First and foremost, my friend and former colleague Geoffrey Robinson, formerly of this parish, showed real leadership in promoting the Bill from the outset. The former Health Minister, the hon. Member for Thurrock (Jackie Doyle-Price), was brilliant throughout the passage of the Bill, as were the right hon. Members for Maidenhead (Mrs May) and for South West Surrey (Jeremy Hunt), my right hon. Friend the Member for Islington North (Jeremy Corbyn), the current Secretary of State, and Lord Hunt of Kings Heath. Alison Phillips, the editor of the Daily Mirror, and her fantastic team also championed this cause and very helpfully raised public awareness. Kidney Care UK provided outstanding support during the campaign and continues to provide outstanding support to ensure that Max and Keira’s law will be a success.
Most of all, though, I would like to thank Max Johnson, his mother Emma, and the family of Keira Ball. For those who may not be familiar with it, as stories go there are few more powerful than Max and Keira’s. Keira Ball was nine years old when, tragically, she died. Despite the unimaginable grief, Keira’s parents bravely and selflessly chose to donate her organs, including her heart, to a young boy, Max Johnson, who was in urgent need of a transplant. Max recovered from his operation and has been a tireless champion of the new opt-out system for organ donation. Tomorrow will be a very special day for many people, but for Max it will be especially poignant.
I am extremely proud to have worked with Geoffrey and with others to take Max and Keira’s law through Parliament. I would like briefly to reflect on the reasons I believe that it is so important. First and foremost, this law is about saving lives. We are all, I know, extremely grateful for the outstanding job that NHS Blood and Transplant does. In the year to this April, there were 3,763 organ transplants from deceased donors, in addition to 970 living donations. Yet despite the incredible efforts made, demand for organs heavily outweighs supply. Last year, as the Minister reflected on, more than 400 people died while waiting for a transplant and hundreds more were suspended from the waiting list after becoming too ill to undergo the operation they so desperately needed. There are currently about 5,000 people in the UK who, just like Max was, are living under a cloud of uncertainty, waiting and hoping for an operation that will save their life.
One of the many devastating knock-on consequences of the coronavirus crisis is the impact it has had on those in need of an organ transplant. Operations have been postponed and the number of people dying while waiting for a transplant has sharply risen. The coronavirus is putting huge extra strain on a system already under pressure.
As well as offering hope to families, I believe that Max and Keira’s law will also benefit society by helping to bring people together. The decision that Keira’s parents took was an act of compassion that represents the best of humanity—a lesson in solidarity from which we can all learn. We must be mindful, however, that the new organ donation system will not in itself be a silver- bullet solution. We all still need to play our part. We know that this law will improve the consent rate. The devolved Government in Wales introduced their opt-out system in December 2015. The result was stark: Wales now has the highest consent rate of any UK nation at 77%, up from 58% five years ago.
However, if we are going to make a success of the new system, NHS Blood and Transplant will require additional capacity to deal with an increase in donors. That means that the Government must ensure that our NHS trusts have the resources they need to perform the operations, to support the donors and their families, and to care for the patients after their transplants.
This also includes the medical staff, so they understand the new system and encourage bereaved families to talk, understand and support their loved one’s wishes. The Government must also maintain their support for the public awareness campaign, so that the changes are widely understood and everybody knows that the choice to donate is still yours to make. Donors should know that they will be treated with dignity and respect, and the family of the deceased will still be involved.
I am very aware of the Department of Health and Social Care’s work, including with the National Black, Asian and Minority Ethnic Transplant Alliance and the launch of the community investment scheme, but it is essential that we continue to direct our efforts into BAME communities, which are often most affected. Nearly a third of those on the active transplant list are from black, Asian or ethnic minority backgrounds, and it is members of that community who also wait longer for operations. Improving education and raising awareness is important so that everyone has an equal chance, regardless of their ethnicity, of having a life-saving transplant.
We also all have a responsibility to record our choice on the NHS’s organ donor register and, crucially, to tell our loved ones what our intentions are. The coronavirus has left thousands of families in mourning, shattered our economy and upended our entire way of life. Good news is in short supply, but the implementation of Max and Keira’s law affords us a rare glimmer of hope—the hope that more lives will be saved and the hope that we, too, can act with decency and empathy, even in the worst of times. Thank you to all those who made it happen.