14/23 NHS BLOOD AND TRANSPLANT 30 JANUARY 2014 REPORTS FROM THE UK HEALTH DEPARTMENTS. Reports from Scotland, Wales and Northern Ireland are attached.

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1 14/23 NHS BLOOD AND TRANSPLANT 30 JANUARY 2014 REPORTS FROM THE UK HEALTH DEPARTMENTS Reports from Scotland, Wales and Northern Ireland are attached. Lynda Hamlyn Chief Executive January 2014

2 Scottish Government Update for NHSBT Board Meeting: January 2014 In 2013, for the first time ever, there were more than 100 deceased donors in Scotland in any one calendar year. 113 people donated their organs after their death up from 53 in In the same year, 309 people benefitted from solid organ transplant also a record number. The last two meetings of the Scottish Transplant Group have very much focused on the actions necessary to ensure the implementation of the recommendations made in A Donation and Transplantation Plan for Scotland which sets out the ways in which we hope to improve donation and transplantation in Scotland. Encouraging people to talk about organ donation and to join the NHS Organ Donor Register has once again been the focus of the Scottish Government s annual advertising and publicity campaign which was launched at the end of October The TV and radio campaign ran for six weeks in the run up to Christmas and is now on its final run up until the end of January however PR and digital activity will continue to run for the remainder of the financial year. A full evaluation of the campaign will be undertaken in due course and will guide our plans for the campaign. We are particularly pleased with the performance of the Organ Donation Scotland (ODS) website and the ODS Facebook page which has had 17,000 likes in just under 3 months. Both these sites have created a focus for our annual campaigns, making joining the NHS Organ Donor Register (ODR) easy and allowing people to share their organ donation stories. We have provided a grant to Kidney Research UK to enable them to run a 2 year peer-educator project with the South Asian communities in the West of Scotland. The project manager, Neerja Jain, will recruit a network of peer-educators who will work with the South Asian communities to raise awareness of organ donation and encourage sign-up to the ODR. A news release will be issued and a launch event will be held on the 28 th January. Plans for the new national memorial for organ and tissue donation are now at an advanced stage and the actual build will commence in March. The artist, Alec Finlay, has created a blog to document the development of the memorial In early December donor families braved a severe storm to attend a donor recognition ceremony organised by NHSBT and the Order of St John and held in the City Chambers in Edinburgh. This ceremony was very much appreciated by all who attended. Pamela Niven OBE Programme Manager, Organ Donation and Transplantation 2

3 Wales Update Report for NHSBT Board Meeting 30 January 2014 Organ Donation and Transplantation Human Transplantation (Wales) Act 2013 The Human Transplantation (Wales) Act 2013 will come fully into effect on 1 December The implementation project is now underway and there are four main strands. These are: Communication and engagement campaign New bilingual website was launched on 1 December The two year advertising campaign started week commencing 6 January The first phase of the campaign will be seen across the UK top 450 websites, Facebook and those websites that are owned by regional press and radio in Wales. The adverts are interactive and provide a lot of detail about the legislation, and if users want more information they can click directly through to the new website. The online advertising will run continuously until March. Two radio adverts will run for a two week period w/c 20th Jan and again for a week w/c 24th Feb on Real Radio. This will be supported by press advertising in all regional publications across Wales, including Golwyg and Papurau Bro, Buzz magazine and the Big Issue. Redevelopment of the register the project has now moved into its detailed design phase following receipt of NHSBT Board and Cabinet Office approval and the signing of contracts with the supplier. Code of Practice, training and information for NHS staff the Human Tissue Authority s consultation on its Code of Practice closed on 23 December and a revised version of the Code will be considered at the HTA meeting on 28 January. A timetable for the formal Assembly/Parliamentary approval process will then be agreed. A meeting is planned for 4 February to begin discussions for training requirements and business change processes linked to the register redevelopment and to the new legislation. Subordinate legislation in line with the powers set out in the Act, we will be bringing forward regulations on those materials to be excluded from deemed consent; people who may act as appointed representatives and consent to transplant activities for living adults lacking capacity. These will be consulted upon before going through the affirmative procedure in the Assembly. There is also a significant evaluation programme running alongside the implementation of the new legislation, with research focussing on public attitudes, views of wider NHS staff, specialist nurses and clinical leads and the impact of the legislation. The second meeting of the project implementation board took place on 22 January. Taking Organ Transplantation to 2020 Wales Action Plan To complement the UK strategy the Wales Organ Donation Action Plan was launched at the Towards 2020 Organ Donation and Transplantation Conference on 26 November. 3

4 This plan will act as a work programme for the Welsh Government, Wales Transplantation Advisory Group, the NHS in Wales and stakeholders to ensure the actions set out in the UK strategy are delivered alongside any specific actions which may be required in Wales. Wales Transplantation Advisory Group On 3 December 2013, Wales Transplantation Advisory Group had the first of a series of meetings with representatives from Local Health Boards in Wales which focussed on the variation in organ donation performance and the progress being made. Blood All Wales Blood Service The Board is aware of the project to establish an all-wales blood service by To manage the change, an All Wales Blood Service Programme Board is in place chaired by Simon Dean, Chief Executive of Velindre NHS Trust. There are a number of work stream groups focussing on the transition of services. The appointment of a programme manager has been further delayed but an interim programme manager has been put in place. The Programme Board expect to agree a transfer date at their next Board meeting along with the service model they propose to take forward. There have been discussions regarding the transition costs and data transfer and work is being taken forward to progress these issues as quickly as possible. 4

5 NHSBT Board Meeting on 30 January 2014 Northern Ireland Update Media Campaign following publication of report on attitudes towards organ donation 1. Early last year the Minister, Edwin Poots MLA, announced his intention to consult on public attitudes towards organ donation, including the possibility of an opt-out system for organ donation, in Northern Ireland; this work was taken forward by the Public Health Agency (PHA). 2. The report on the PHA s findings on the survey of the general public and focus groups with key stakeholders was published on 16 October. Some of the main findings included Just over half of respondents said they knew the donation wishes of their wife/husband/partner, and fewer knew the wishes of their family and friends. Whilst 84% of respondents supported the idea of organ donation, just over half supported the idea that everyone should register for organ donation. More than a third of respondents were not aware of the organ donor register (ODR). Awareness was lowest among the youngest (16 29 years) and oldest (over 65 years) age groups. This illustrates the importance of promoting the ODR and encouraging people to sign. 78 % of respondents said they would be willing to accept an organ if they needed one. And the same amount agreed that it is important to discuss your donation wishes with your family and/or friends. However, only 38% had done so and only 43% thought their family/close friend would know their wishes. 56% of respondents said that they would be in favour of changing to a system where it is presumed that I have consented to donation ; however, this decreased to 49% when respondents were asked to rate the extent to which they agreed with the statement, everyone should be presumed to be an organ donor unless they register a wish otherwise. 3. The PHA also announced plans to run a major public awareness campaign on organ donation, which will run in February / March The campaign has been based around the following objectives To raise awareness of the issue of organ donation in Northern Ireland; To encourage people to talk about organ donation with family and close friends so they are aware of their wishes; 5

6 To increase awareness of the organ donor register (ODR) and how to sign up; To increase the number of people in Northern Ireland on the ODR; and To support clinical staff in their ongoing work to improve consent rates for organ donation. 4. Plans for the campaign are currently being finalised and include the following TV adverting campaign; Radio adverts; Outdoor posters; Internet campaigns on various platforms; A dedicated website; Support material such as leaflets and posters for places such as GP surgeries; PR marketing with the local press; and Continued promotion with the local voluntary sector. 5. The Minister is currently considering the PHA s report and will decide on the way ahead for organ donation in Northern Ireland, including a legislative opt-out, if that is considered necessary. DCD Kidney transplants 6. Although DCD organs have been donated in Northern Ireland, there had not been any DCD transplants carried out in Northern Ireland; however, the first two DCD kidney transplants recently took place in Belfast. Private Member s Bills 7. There are currently two separate Private Member s Bills concerning organ donation being developed in Northern Ireland To change the organ donation law to establish a new soft opt-out system; and 6

7 To change to a system of prompted choice question on organ donation when drivers in Northern Ireland apply for, or renew their driving licence. 8. Both Private Member s Bill s are still in development and have no confirmed dates for introduction to the Northern Ireland Assembly. 7

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