Part of the debate – in the Senedd at 2:47 pm on 14 June 2016.
Thank you, Presiding Officer. I am grateful for the opportunity to provide Members with an update six months on from the introduction of the Human Transplantation (Wales) Act 2013 and the introduction of deemed consent for deceased organ donation in Wales. This fully came into force on 1 December 2015. Members will know that people aged 18 and over who have lived in Wales for more than 12 months and who die in Wales are now regarded as being willing to donate their organs unless they have expressly said they do not wish to do so.
The path to organ donation is a complex one, but consent is the stage at which most donations are lost and I am extremely proud that Wales now leads the way as the first nation in the UK to move to a soft opt-out system of consent. I fully expect that the new system will create a step change in consent for organ donation in Wales and early indications are that that is the case. In line with many other European countries with similar systems, this law was introduced to address the chronic shortage of organs for transplant that we face in Wales. I am sure we’ve all heard heart-breaking stories about people on organ waiting lists. However, based on international evidence, we anticipate that the new system will increase organ donation by around 25 per cent, or an additional 45 organs per year.
In preparation for the change in the organ donation consent system, a great deal of work was undertaken to inform and engage the public. In the two years prior to full implementation, we undertook the largest and most wide-ranging public health information campaign in the history of devolution to explain these changes. Now, regular information has been collected on public awareness and the understanding of the organ donation law to monitor the effectiveness of that campaign. The latest survey in February 2016 showed that 74 per cent of the Welsh public could describe the changes unprompted, compared with 53 per cent in 2012. Now, this is an unprecedented level of understanding for something that was considered by some as being complicated. That 21 percentage point difference highlights a highly effective campaign, and I’d like to express my heartfelt thanks to the people of Wales for not only embracing this ground-breaking legislation but for also taking the time to consider, to discuss and to register their decision about organ donation.
As of 28 May 2016, just over 167,000 people in Wales, or roughly 5 per cent of the population, are registered on the NHS organ donor register to opt out. That’s far less than was anticipated in June last year, when a survey showed that 14 per cent of Welsh residents would opt out. It’s really important that people who do want to positively opt out of the system have the opportunity to do so. But, in addition, there are now over 1.1 million people in Wales, over 35 per cent of the population, who are now positively registered to opt in to organ donation.
I’d like to thank the numerous stakeholder organisations for their unstinting support. I’d especially like to thank all the patients and families who helped with our public information campaign by generously sharing their own experiences, their moving experiences, to personalise the campaign. None of this would have been possible without the hard work and support of a very large number of people across Wales and beyond.
The redevelopment of the organ donor register was a key part of the work needed to provide the means to record an opt-out decision. That work was carried out with NHS Blood and Transplant and the other UK nations, and it was delivered six months before the law came into force. This allowed people enough time to record their decision. Everyone in the UK is now able to record their organ donation decision, whatever that might be. This has only been possible by the support provided by people across this Chamber in the development and implementation of the Act.
There will continue to be a need to maintain an understanding of the new system and the organ donation choices that people have in Wales: opt out, opt in or to do nothing. The communication plan for the coming year will focus on promoting conversations between families and loved ones on their organ donation decisions, whilst also encouraging people to register their decision on the organ donor register.
Although an increase in awareness levels is a measure of success, the real indication that that our legislation has delivered the required outcome will be an increase in donors, resulting in more patients and families benefiting from transplantation. Results for the first six months of the new legislation being in place, from 1 December last year to 31 May this year, showed 18 cases where consent was deemed in Wales. Ten of those proceeded to donation, but there were 42 consenting additional donors in total for that period. For the same period in 2014-15, there were 38 consenting donors, and 31 in 2013-14.
If we look solely at the 18 cases where we can identify that consent was deemed, 10 patients proceeded to donate. From those donors, 37 organs were donated and 32 went on to transplantation. In comparison to the figures for the similar period prior to the change in the law for all proceeding donors, these numbers do look very positive indeed. A formal evaluation of the impact of the new law has been commissioned and will be published next year.
I am grateful to Members of all parties for their contributions over the last few years in ensuring that Wales has been able to lead the UK in developing a soft opt-out system of consent for organ donation. Wales needed a transformation in donor and family consent, and the implementation of the Human Transplantation (Wales) Act 2013, I believe, has delivered that change. I look forward to hearing Members’ comments and questions.