1. Human Transplantation (Wales) Act 2013 & the impact for the UK

2. Countdown to organ donation changes in Wales: 21 Days to go

3. What does the Act do? Sets out how consent is to be given in Wales to the donation of organs and tissues for transplantation.

4. Creation of 2 types of legal consent: 1. Express Consent Decision to donate (opt in) –Yes I want to donate all or some of my organs. Decision not to donate (opt out) – No I don't want to donate. Decision to appoint/nominate a representative to make a decision about donation on their behalf (not in Scotland)

5. 2.Deemed consent (opt out system/presumed consent) Unless a person has taken the deliberate step of recording they do not want to be an organ donor after death, then they will be regarded as having no objection to organ donation and their consent will be deemed to have been given. The Act does not require a person to record their decision about organ donation. It is up to the individual to decide how best to do this.

6. Deemed consent will apply to Adults: Over the age of 18 (from 00.00 on their 18th birthday) Who have lived in Wales for 12 calendar months or more and are ordinarily resident in Wales in a voluntary capacity Who have not expressed or recorded a decision Who also die in Wales

7. Deemed consent will NOT apply to people…. < 18 years of age Who lack capacity to understand the notion of deemed consent Have lived in Wales <12 months or who are not ‘ordinarily residents’ Visitors to Wales

8. Or people who have…. Join the Organ Donor Register 0300 123 23 23 Appointed a representative to make a decision regarding donation on their behalf Opted In or Out Family or friends that object because they know the deceased would not have consented No Not what he wanted No Welsh residents who die elsewhere Novel Transplants

9. New ODR

10. Do Not want to be a donor Do want to be a donor Appointed/ Nominated Representative to make decision No registration on the ODR ODR Registration

11. Establish with family/friends whether first person consent exists i.e. had the patient made a decision in regard to organ donation? Establish with family whether the patient nominated/appointed a representative to make a decision about donation on their behalf (Not in Scotland) In Wales - establish if patient fulfils criteria to apply deemed consent Family consent/authorisation from person in highest qualifying relationship Sequence of obtaining consent when patient is Not on the ODR 1 2 3 4 If not If not applicable If not

12. Weekly Organ Donor Register activity in Wales (based on residency) Data as at 5 November 2015 Week commencingOpt-in decisionsOpt-out decisions Appointed representative on the ODR NNN < 01/06/2015103659865900 01/06/2015313040 08/06/201538111360 15/06/20153765172190 22/06/2015317564620 29/06/2015175039010 06/07/2015166527320 13/07/2015146919371 03/08/2015134211600 17/08/2015149117120 07/09/2015168824500 21/09/2015173028510 28/09/2015180218310 19/10/2015182821130 26/10/2015223567732 Total1080668726358

13. ODR registrations by nation. Data as at 5th November. NationOpt-insOpt-outsAppointed representative England1794947923828 Wales1080668726358 Scotland22541442040 Northern Ireland 653674330

14. Measures of success (Wales) Considered to be a lever for a cultural shift in behaviour & attitudes towards increasing consent Clarify people’s organ donation decision and to share with those closest to them Expect approx 15 additional donors p.a Impact evaluation report due September 2017 will look at number of background factors as well as new law Donor family research on the impact of the Welsh legislation on decision making by Bangor University and NHSBT

15. Considerations for the whole of the UK Increased awareness through publicity will affect consent rates Potential to aid families not to default to a ‘No’ if individuals are able to register a no on the ODR. Welsh residents who die elsewhere in the UK may still think that their consent can be deemed – it cannot. However, a presumptive approach could be made.