The Human Transplantation (Wales) Act 2013 Making it work

1. The Human Transplantation (Wales) Act 2013 Making it work 2/12/2014

2. Human Transplantation (Wales) Act 21013 • Human Transplantation (Wales) Bill received Royal Assent September 2013 • Not all of the act came into force immediately • Main sections will not apply until 01/12/2015 • Communications campaign began in Dec 2013 to ensure everybody is aware of their choices.

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. 4 Choices • Opt in – When somebody registers their express intent to be a donor (express consent) • Opt out – When somebody registers their express intent not to be a donor • Appoint a representative to make a decision on their behalf • Deemed consent the default position which will apply if the person has NOT indicated an express intent (Chosen to do nothing)

5. Deemed consent Will apply to • People over the age of 18 who ordinarily live in Wales and who also die in Wales Will not apply to • People who have opted in or opted out • Under 18s • People who lack capacity to understand the notion of deemed consent • Individuals who appoint a representative • People whose family or friends object because they know the deceased would not have consented • Living donors

6. Communications campaignThe countdown to organ donation changes in Wales • Welsh Govt communications team • Clare Mumford and Sandra Jenkins • The Agencies • Cambrensis communications- PR & Media • Golly Slater- Advertising & Creative • Group Media- Digital & Social Media • CognitionAssociates- BME & Faith Engagement • Started in Dec 2013 and will last two years and consist of different phases of information, including writing to every household and engagement with hard to reach groups • People will be given plenty of time to decide whether to register an express wish and be encouraged to talk to their families

7. Time to change the way we become organ donors in Wales • Dec 2013 Time to think • April 2014-Dec 2014 Time to talk • Jan 2015- May 2015 time to talk (more detail) • June 2015-Dec 2015 Time to Choose • Dec 2015- Onwards There’s always time

8. New ODR • All four UK countries have agreed the specification for a new, single UK-wide register • Steering Board is overseeing the work which is being led by NHSBT • The advantage for clinicians is that there will be only one place to look • The register will be technically more robust than the existing ODR and will be capable of registering opt-in and opt-out decisions as well as up to two appointed representative details

9. Registering a No on the ODR • Any person from Scotland, N. Ireland, England and Wales who wishes to register a No to organ donation will be able to do so on the new ODR • There won’t be any promotion in England,to inform the general public of this option • Scotland and N. Ireland will undertake promotion to choose

10. New ODR • User Acceptance testing to commence Jan 2015 • Data migration is expected to be complete by April 2015 • On track to enable opt out registrations via the web site by June 2015 • +or – opt out registrations via Welsh Gp’s

11. Human Tissue Authority Code of Practice • Public consultation took place from September – December 2013 • The Code will need to be approved by the Minister and Secretary of State for Health & then laid before the Assembly (Sept 2015) and Parliament

12. Subordinate Legislation • Section 150 order is being scrutinised by the joint committee on subordinate legislation and will be laid before parliament in the new year. • Online consultation on 3 draft regulations under the HT(W)A 2013 ends Jan 2015.

13. Training for healthcare professionals • Training needs to be based on the HTA codes of practice • Clinicians need to be ready to operate within the Law • Requiring development of specific effective training • Operating procedures reviewed and amended • Documentation reviewed and amended

14. There are a large number of different groups of people who will be either affected by the new legislation or the implementation of the new ODR • Different training requirements for professionals in different roles

15. Priority 1 ODR team Duty office SNODs CLODs RCLODs National referral centre Call centre Priority 2 Tissue services Eye retrieval ICU clinicians/ nurses ED clinicians/ nurses ODCC Independent tissue organisations Other staff involved in the consent process Training approach

16. Priority 3 Wider NHS Wales staff (GPs; non ICU/ED clinicians and nurses) Priority 4 Wider NHS staff in the UK

17. Objectives/ Goals • All users of the ODR are proficient in the use of the ODR system to carry out their roles; • All SN-ODs and clinicians directly involved in the consent process fully understand the types of organ donation decisions which can be registered and their implications in detail; • Other hospital staff have an understanding the of the legislation, code of practice and the processes; • Wider NHS stakeholders are aware of the legislation and code of practice for organ donation.

18. Training Delivery (yet to be determined)

19. General Public Wales • Awareness of the new legislation and organ donation decisions for the general public in Wales will be addressed by the Welsh Govt communications strategy. • Awareness for the general public in the rest of the UK is being undertaken by their individual governments except in England.

20. Go live