Welsh Legislative Changes

1. Welsh Legislative Changes

2. 3 people die in the UK every day waiting for a transplant

3. In 2013 we achieved our target of a 50% increase in donors over 5 years

6. Public support?

7. Average 68% 51%

10. Legislative options Opt-in system • Current system in the UK Mandated choice • Increase organ supply without affecting autonomy? • Irony of enhancing autonomy by coercing choice Required referral • Legal obligation to refer brainstem dead patients Opt-out systems • ‘Consent’ presumed unless you opt-out • Hard v soft systems relate to family influence

12. Recommendations July 2008 “not at this stage to seek a Legislative Competence Order” “if presumed consent in Wales [or UK] a‘soft’ system should be used” Implement the Organ Donation Task Force recommendations as a matter of urgency

13. Welsh Health Minister 2007-11 Rejected the committees recommendation “did not reflect the weight of public opinion” Launched a public consultation 2009 3 major parties promised to legislate White paper 2011 Draft bill 2012

14. Evidence Opt out systems are associatedwith increased organ donation rates It can not be inferred that this means presumed consent causes increased organ donation Public Support 49% - 63% in favour of change

15. New legislation • 10th September 2013 • Bill passed and became an Act • Opt out system of ‘deemed consent’ • Hope is an extra 15 donors per year • 45 extra organ transplants in the UK

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

17. Creation of 2 types of legal consent from 1 December 2015 Express consent Yes, I want to donate my organs No, I don’t want to be an organ donor Appoint or nominate a representative Deemed consent (opt out system/presumed consent) Unless a person has taken the deliberate step of recording that 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.

18. Advertised simple choices

19. Welsh have 4 choices • Register a decision TO donate • ‘Express consent’, same as current situation • If family refuse, reasons explored • Able to specify organs • 2. Register a decision to NOT donate • Inform family why they are not being approached • 3. Appoint a nominated representative to decide on their behalf • 4. Do nothing or no decision registered  ‘Deemed Consent’

20. Deemed consent: Wales Only Applies to people • Over 18 years • Dying in Wales • Ordinarily living in Wales • Who have not expressed or recorded a decision Will Not apply to people • Who registered a wish verbally or via the ODR not to donate • Under 18 years • Visiting Wales • Dying outside of Wales • That lack mental capacity • Whose family/friends knew the deceased objected • Considering novel Tx or living donation

21. Deemed consent: 3 stage test Law only applies to those over 18, living and dying in Wales

22. Exclusions to deemed consent

23. Ordinarily resident • Qualities of residency (para. 53-61) • Adopted voluntarily • Resident for settled purposes • Residency supported the regular order of their life for the time being

25. Donation conversation ODR Registration DO NOT want to be a donor ODR Registration DO want to be a donor Appointed Representative No registration on the ODR Identify patients Wishes Express consent/ authorisation Deemed consent If applicable 1/12/2015 Wales only Family consent/ authorisation Family accept decision Express consent Required research etc Presumptive conversation

26. Family play a key role • Need residency and medical information • Last known decision • Difficult to imagine over riding family

27. Implications for the UK • Welsh resident dying outside of Wales • HTA 2004 or HTA (Scotland) 2006 • Need to check donor register (opt in or opt out wish) • Deemed consent will not apply outside of Wales • Non-Welsh resident dying in Wales • They fail the 3-stage residency test • Current rules and approach apply • Will be able to opt out for the first time and appoint a representative

28. New ODR for the UK • New, single UK register • Steering board overseeing work led by NHSBT • Only one place to look for clinical staff • Technically more robust • Register opt-out decisions and up to 2 appointed representatives (available for all of UK)

29. Cyfri’r dyddiau cyn newid y drefn rhoi organauyng Nghymru. Countdown to organ donationchanges in Wales.

31. Communications plan – Phase 2 • Sep – Dec 2014: IT’S TIME TO TALK • TV advertising: 30’ TV ad, four weeks in October. Stations include ITV1 Wales, S4C, Sky Adsmart, ITV Player, 4OD. • Radio: November • Online: Displaynetwork across Wales November - December • Outdoor: • Bus street liners 4 weeks November • 6 sheets / digital 6 sheets, 2 weeks, across student campuses • Direct mail: eDM via UCAS to all students who have accepted a place in a Welsh university and live outside of Wales

32. Communications plan – Year 3

33. Comprehensive and practical guide to the new legislation Via HTA website: www.hta.gov.uk

34. Questions?

35. Useful resources on the NHSBT microsite www.odt.nhs.uk www.organdonationwales.org www.rhoiorganau.org Cyfri’r dyddiau cyn newid y drefn rhoi organau yngNghymru. Countdown to organdonation changesin Wales.