Human Transplantation (Wales) Act 2013

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

2. Countdown to organ donationchanges in Wales: 21 Days to go

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

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. 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 ormore and are ordinarily resident in Wales in a voluntary capacity • Who have not expressed or recorded a decision • Who also diein Wales

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

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

9. New ODR

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

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

13. ODR registrations by nation. Data as at 5th November.

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.