Human Transplantation (Wales) Act 2013

& the impact for the UK

Countdown to organ donation

changes in Wales:

21 Days to go

What does the Act do?

Sets out how consent

is to be given in Wales

to the donation of

organs and tissues for

transplantation.

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)

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.

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

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

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

New ODR

Do Not want to be a donor

Do want to be

a donor

Appointed/Nominated

Representative to make

decision

No registration on the ODR

ODRRegistration

Establish with family/friends whether first person consent exists i.e. had the

patient made a decision in

regard to organ donation?

Establish with familywhether 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

Weekly Organ Donor Register activity in Wales (based on residency)Data as at 5 November 2015

Week commencing Opt-in decisions Opt-out decisions

Appointed representative on the

ODR

N N N

< 01/06/2015 1036598 6590 0

01/06/2015 3130 4 0

08/06/2015 3811 136 0

15/06/2015 3765 17219 0

22/06/2015 3175 6462 0

29/06/2015 1750 3901 0

06/07/2015 1665 2732 0

13/07/2015 1469 1937 1

03/08/2015 1342 1160 0

17/08/2015 1491 1712 0

07/09/2015 1688 2450 0

21/09/2015 1730 2851 0

28/09/2015 1802 1831 0

19/10/2015 1828 2113 0

26/10/2015 2235 6773 2

Total 1080668 72635 8

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

Nation Opt-ins Opt-outs Appointed representative

England 17949479 2382 8

Wales 1080668 72635 8

Scotland 2254144 204 0

Northern Ireland

653674 33 0

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

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.