Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation The Human Transplantation (Wales) Act 2013 Making it work 13/10/2014

Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation Human Transplantation (Wales) Act 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.

Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation What does the Act do? Sets out how consent is to be given in Wales to the donation of organs and tissues for transplantation.

Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation 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

Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation 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

Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation Communications campaign The communications campaign started Dec 2013 A media services agency has been appointed to create and manage the advertising It 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

Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation

Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation 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

Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation 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, Scotland and N. Ireland to inform the general public of this option

Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation Human Tissue Authority Code of Practice Public consultation took place from September – December 2013 –Public facing events –Drop-in sessions at hospitals for staff – A&E and Intensive Care –Important this consultation is well publicised The Code will then need to be agreed by the UK Govt and Welsh Assembly.

Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation Training for healthcare professionals There is a large number of different groups of people who will be either affected by the new legislation or the implementation of the new ODR

Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation Training approach 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

Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation Priority 3 Wider NHS Wales staff (GPs; non ICU/ED clinicians and nurses) Priority 4 Wider NHS staff in the UK

Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation 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.

Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation Training Content Type 1: Being able to access and use the ODR; Type 2: Understanding what to do based on the information in the ODR; Type 3: Being aware of possible organ donation decisions and their implications.

Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation Training Delivery (yet to be determined)

Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation 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 and the Welsh Implementation project. Awareness for the general public in the rest of the UK is not being undertaken.

Karen Morgan Business Lead Welsh Legislation Project Organ Donation and Transplantation Go live