'How’s Mark keeping?' – the words of the then Welsh Health Minister, now First Minister, Mark Drakeford as I walked into his office in the Department of Health in Cardiff back in 2014. We were meeting to discuss the opt-out Bill which the Welsh Parliament had passed the previous year, and it was so touching to me for Mark to ask after my Mark who has lived with chronic kidney disease since birth and was my motivation for bringing forward a similar Bill at the Northern Ireland Assembly.
Fast forward to 2023 and on Thursday 1 June, Northern Ireland becomes the last of the four UK nations to adopt an opt-out Organ Donation system. This means that all adults are considered willing to be a donor unless they opt out or are in an excluded group. (The excluded groups are people under 18 years old, those not ordinarily resident in Northern Ireland and those who lack the mental capacity to understand the law change for a significant period before their death.)
As the original proposer of the legislation, which will be known as Dáithí’s Law, I wanted to take this chance to reflect on the over ten year journey it has taken. I also want to look at the further steps which are needed to ensure we continue to promote and encourage the most selfless act of love and kindness through being an organ donor and passing on one or more organs when we no longer need them. It truly is one of the greatest legacies any of us can leave behind.
Changing legislation alone doesn’t save lives, people do. By continuing to talk about organ donation, highlighting the myriad of local human stories of love and compassion, we can encourage more and more people to share their wishes with their loved ones which remains as crucially important under the new law as it did in the past and, we know, makes donation much more likely.
In my view, this is one of the best pieces of legislation the Northern Ireland Assembly has ever passed. But while changing to an opt-out system is the right thing to do, it’s not the only thing to do and the campaign to save lives doesn’t stop there.
It’s hugely positive to see the Public Health Agency’s public awareness campaign moving ahead which, alongside the continued vital patient-centred promotion of all our local charities, will ensure consent rates for organ donation can only continue to rise, giving everyone who needs a transplant renewed hope and a greater chance.
Political unity
The all too rare union which was achieved across all our local political parties must be commended, as the fact that common ground was reached on the issue of organ donation reform must give us all hope for the future.
Indeed the crucial reforms and investment which the Northern Ireland Health Service so urgently needs would require a similar unity of vision – reforms which will have an impact on earlier diagnosis and on our local transplantation services.
Like the countless other patients who have been through their amazing care I cannot speak highly enough about our local kidney transplant teams across Northern Ireland, and I’m extremely proud of the continued support we provide to them through Kidney Care UK. However without reforms, backed up by increased investment, alongside greater staff training and advancement opportunities we will not fully achieve the future continued improvements we need to see in our organ donation services.
The solution will only come through decisive political leadership however part of the answer lies within the recommendations of The Organ Utilisation Group, which reported in February, and we understand that Northern Ireland would like to follow these. These include placing the patient at the heart of the service, better use of data, improved workforce planning, and building on the lessons from the Covid pandemic.
A rich heritage
Dáithí’s law has a rich heritage and I cannot help think of those who have gone before us and whose support, over many years, has been crucial to achieving it. The contribution – both individually and collectively – of our wonderful transplant charities who never lost faith that we would modernise our laws is to be richly recognised.
I said earlier that changing legislation doesn’t save lives, people do – however it takes people to change legislation and the person who made it happen, who brought the issue back into Stormont and who ensured that the Bill would pass was our former Health Minister Robin Swann. Robin made a commitment many years ago and I commend him for his leadership in seeing this through.
At Kidney Care UK we are proud to have been involved throughout the legislative process of the opt-out law and we continue to work with elected representatives and Department of Health officials in the best interests of everyone living with kidney disease and those who need transplant.
While it is right that we celebrate this achievement its equally right that our Department of Health and local Health Trusts focus firmly on the future and the important roll out of the public information campaign.
Four nations
I will never forget Mark Drakeford’s kindness and advice back in 2014, and how alongside Anne McTaggart MSP who was advancing an opt-out Bill in Scotland, he travelled across to Northern Ireland. Representing the three devolved nations we spoke with one voice in the Long Gallery at Stormont about the life-saving and life-transforming potential of Northern Ireland moving to an opt-out system.
Just as Thursday 1 June 2023 is a landmark day for organ donation in Northern Ireland, Tuesday 1 December 2015 was Wales’s day, as their opt-out system came into operation.
I remember many of us viewing the Welsh legislation, rightly as it turned out, as the beginning of a tidal wave of change in our national organ donation laws. Where Wales led, the rest of the Country has followed and it has been the case that as a national charity Kidney Care UK has been supportive and involved throughout the process as each nation changed its laws.
It is an extremely proud day for me to see Dáithí’s law come into being – but it is in the weeks, months and years ahead that we will see the real impact. It will be felt by people and families who most likely haven’t heard much about organ donation, transplantation or kidney disease
Those of us who are part of the organ donation family will not rest until everyone who finds themselves in need of an organ transplant has the best possible chance of receiving one. Dáithí’s law is an historic milestone in the unstoppable campaign to save lives through the power of organ donation.
Whatever your personal views on organ donation, it’s vital that you share these with your loved ones. Only 1% of people die in a way that enables organ donation to take place, so it’s unlikely your family will ever be asked, but on the chance that this were to happen it’s so important that they know what your wishes are. Families will always be consulted, so have the conversation today.
You can register your decision on the NHS Organ Donor Register.