Human Tissue Authority

The regulator for human tissue and organs

Organ donation: Lessons from Wales

28 August 2019
Author: 
Mike Stephens

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.

Last updated on: 30 Aug 2019

Comments

The year-long public information campaign hasn't begun yet (aside from a few posts on Facebook that are gradually being toned down after the authoritative tone taken by NHSBT staff that 'things will be made clear to families')There is a lot of public opposition to this new law, and the Government, NHSBT and other stakeholders are sticking their fingers in their ears and ignoring it. This change in the law is running the very real risk of reducing the number of donations to a level lower than today, from which we will be unable to recover from as we will have a new list of people objecting to organ donation that doesn't currently exist. 
Posted by Greg - 30 Aug 19 - 13:41

Hi Greg,

Thanks for taking the time to read the blog and leave a comment.

NHS BT's year long awareness raising campaign has begun, but it may be useful feedback for them that you had not really picked up on this.

Our primary consideration is in ensuring that professionals can be confident working under the new system, and in turn that this can give the public reassurance.

Despite a change to the law, the process involved in assessing whether a donation goes ahead or not does not really change in a practical sense.  Although consent will be able to be "deemed" in the absence of any record of the deceased wishes, their family will continue to be invovled as they are now under the current system, providing information on the wishes of the deceased and key infromation about their medical history and lifestyle.

Please do have a look at our consultation that is currently running on our revised Code of Practice for when the new law comes into effect from spring next year and let us know your thoughts.

All the best,

Matthew

(HTA Head of Communications)

Posted by Matthew Silk - 30 Aug 19 - 16:01
Thanks for responding, Matthew.  If the process in assessing whether a donation goes ahead doesn't really change in a practicle sense, then why change the law? I am aware there was never any proper public consulation on this.  I fail to understand how signing up to the Organ Donation Register, let alone 'consent' being deemed, can meet the requirements for informed consent - that would never be allowed for any other form of sugery or intervention.  I have contacted NHSBT with some concerns, but they are not interested in responding to them.  As it is, NHSBT's current process is for hospitals to refer potentional donors to them without even telling the relatives, so the time can be prefectly chosen to do the approach.  It is not an organisation I would trust, whether it is me as a potential donor, or a relative I may be involved in a discussion about at a future date.  The NHS I think, needs to work on building public trust, rather than working on ways to increase their position of power over the public.
Posted by Greg - 30 Aug 19 - 16:17

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