On December 1 2015, Wales became the first country in the UK to implement a ‘soft opt-out’ system for organ donation. Earlier this year we learnt that this has significantly increased consent rates for deceased donation when compared with England. At the time of the law change consent rates in Wales were the lowest in the UK (less than 50%). Now they are the highest by some distance (77% compared with 67% for the rest of the UK).
It’s fair to say there was fairly widespread pessimism from other parts of the country that this legislative change would have any positive impact, and some thought it may negatively affect donor numbers. The scepticism was based predominantly on the lack of scientific evidence that opt-out on its own is effective, coupled with anxiety that legislation could undermine the delicate gift of organ donation.
Perhaps it is not appreciated but there was a similar level of concern and anxiety amongst professionals in Wales at the start of this journey. However this was not a change that happened overnight. The stakeholder and public engagement discussions started in earnest in 2011 and it took two years before the law passed through the Welsh Assembly. There also followed a further two years of publicity before the law became effective in 2015). It was clear from those early stakeholder events that the professionals were cautious, but the public were strongly in favour of the law change.
Of course there were opponents, some very vocal, but there were also many who said the law change didn’t go far enough and that we should be introducing a ‘hard’ opt-out system instead. There followed a mature debate and for the first time ever organ donation was a common topic of discussion around the family dinner tables in Wales.
On reflection, those early days of the stakeholder and public discussions resulted in some important changes of position. The politicians moved their standpoint from “this is an easy vote winner” to “we need to do this carefully” after listening to the professional’s concerns. The professionals moved their view from “this is too risky” to “this is what the public want, how can we make it work?” after listening to the debates and narratives from the general population. The public started sharing more of their stories about the positive impact of organ donation, both for donor families as well as for the recipients of organ transplants.
How has Wales successfully implemented such a huge and controversial change in health policy? There isn’t a simple answer but a key part of it has been listening. The law change in essence simply moved the starting point from “no I don’t want to donate” to “yes I want to donate”, which is consistent with the majority view. It also increased autonomy, as for the first time ever there was a way to register a decision not to donate.
It’s difficult to find fault in those fundamental changes. However the success actually came from the co-productive approach to shaping and then implementing the law, where the initially separate views of the public, the politicians and the professionals merged into one common position. Working together at every turn, with each component doing their part and at the same time respectfully listening to the views from others.
Perhaps Welsh pride had a bit to do with it too. We wanted this to work and we were determined to make it successful! When the initial figures showed consent rates and donor numbers hadn’t really changed in the early months after the implementation, it was co-productive research that identified the reasons and therefore the solutions.
So if I were to offer advice to England and Scotland as they themselves move to an opt-out system, it would be simple. Listen respectfully. Listen to the practical advice from Wales on messaging and operational aspects. Listen to what people are saying about organ donation, both the public and those who work in the healthcare system.
Engage them and let them shape it. They will then have the same pride and desire to make it succeed as we have in Wales.
Don’t just assume a law change itself will increase consent rates as it will not. However this is a fantastic platform on which to educate and promote the messages of organ donation and transplantation, clarify misconceptions, and to allow people to have their say. Like most things, it can be done if people work together.
Mike Stephens is Consultant Transplant and Organ Retrieval Surgeon at the University Hospital of Wales in Cardiff.
In preparation for deemed consent, we are holding a consultation on changes to our Code of Practice F. Find out more and take part.