Organ Donation and Transplantation Strategic Performance Update 27 March 2014

Overview Overview of planned initiatives and timescales 2013/14 Performance against ODT strategic targets Updates on actions and progress against each outcome

Taking Organ Transplantation to 2020: Outcomes 1.Action by society and individuals will mean that the UK’s organ donation record is amongst the best in the world and people donate when and if they can. 2.Action by NHS hospitals and staff will mean that the NHS routinely provides excellent care in support of organ donation and every effort is made to ensure that each donor can give as many organs as possible 3.Action by NHS hospitals and staff will mean that more organs are usable and surgeons are better supported to transplant organs safely into the most appropriate recipient 4.Action by NHSBT and Commissioners means that better support systems and processes will be in place to enable more donations and transplant operations to happen.

Yr 1Yr 2Yr 3Yr 4Yr 5Yr 6Yr 7 Develop national strategies to promote a shift in behaviour and increase consent and test progress with regular public surveys. The relevant Government Health Departments should explore with Education Departments the possibility of incorporating donation and transplantation issues into schools curricula. All Governments should provide regular reports to Parliament/Assembly on progress in their nation and Health Ministers should have a duty to promote organ donation and transplantation effectively leading to a significant improvement in public attitudes and consent for organ donation. There should be national debates to test public attitudes to radical actions to increase the number of organ donors. For example, whether those on the Organ Donor Register should receive higher priority if they need to be placed on the transplant waiting list. Ensure that the introduction of a system of deemed consent to organ and tissue donation in Wales as described by the Human Transplantation (Wales) Bill is as successful as possible and learn from this experience. Develop a community volunteer scheme to support trust/health board donation committees to promote the benefits of donation in local communities, particularly amongst groups with little tradition of organ donation. Following the experience in the USA, ensure everyone who has made a decision to donate during their life has their wishes honoured, if they die in circumstances where donation is possible Outcome 1: Action by society and individuals will mean that the UK’s organ donation record is amongst the best in the world and people donate when and if they can.

Outcome 1 – Performance against target 2013/14

Outcome 1 – Regional variations in performance

Outcome 1 - Progress Public Behaviour strategy presented to earlier describes evidence based approach to changing public behaviour. Human Transplantation (Wales) Bill proceeding with £2m to be spent on communication strategy. New advanced consent training programme for SNs underway. Utilising national forums such as British Transplantation Society Congress to open a national debate

Yr 1Yr 2Yr 3Yr 4Yr 5Yr 6Yr 7 End of Life Care standards should promote BSD testing as the preferred method of diagnosing death, where this can be achieved and is in the best interests of the patient. End of Life Care practices should be reviewed to establish whether they might be adjusted so as to promote donation after DBD. Establish a National Referral Service to improve support to hospitals. Scope the potential for donation following unexpected cardiac arrest in the UK, learning from the pilot programme in Scotland. Families of potential donors will only be approached by someone who is both specifically trained and competent in the role, training packages and accreditation will be provided to those who wish to develop this competence. Work collaboratively to reduce instances of objection to organ donation from the coroner and procurator fiscal service and the police. Publish hospital data to include: brain stem death testing rates, donor referral rates, family approach rates, Specialist Nurse involvement and other key measures. Outcome 2: Action by NHS hospitals and staff will mean that the NHS routinely provides excellent care in support of organ donation and every effort is made to ensure that each donor can give as many organs as possible.

Outcome 2 – Performance against target 2013/14

Outcome 2 – Progress National Referral Service vision agreed Project to work with Coroners and Police underway: gathering data on impact of coronial refusals and building relationships with Coroners & their teams Hospital specific data routinely published on NHSBT clinical website

Yr 1Yr 2Yr 3Yr 4Yr 5Yr 6Yr 7 Improve donor management for potential cardiothoracic donors, providing a 24/7 service to assist if pilot schemes prove effective. Review what pre-mortem interventions could legally and ethically be undertaken to maximise the potential for organ donation (such as the administration of heparin, elective ventilation etc.). Evaluate new techniques and technologies for the preservation of retrieved organs with a view to their use in the UK. Develop a system of peer review that is underpinned by a set of agreed standards for retrieval/transplant centres. Provide guidance on levels of acceptable risk in relation to offered organs, particularly from extended criteria donors, relevant to the individual recipient’s needs and wishes. Publish centre-specific risk-adjusted patient survival from listing as well as from transplantation. Ensure clinicians are aware of and follow, best practice to increase patient and graft survival. Outcome 3: Action by NHS hospitals and staff will mean that more organs are usable and surgeons are better supported to transplant organs safely into the most appropriate recipient.

Outcome 3 – Performance against target 2013/14

Outcome 3 - Progress Data from ‘Scout’ project to improve cardiothoracic donor management indicates an increase in cardiac donation. Peer Review system (with NHS England and other commissioners): aims & objectives being agreed with stakeholders. Proposals due in autumn. UK DEC consulting on an ethical framework for DBD donation. New perfusion technologies: Horizon Scanning event held for clinical community & working group established.

Yr 1Yr 2Yr 3Yr 4Yr 5Yr 6Yr 7 Develop a workforce strategy for the organ donation service which will tailor the service to the needs of individual hospitals and seek to provide a workforce that is focused on supporting the potentially conflicting demands of providing a service to the donor family, donor management and donor co-ordination. Subject to variations in Government policy, agree a formal contract for organ donation with hospitals specifying how hospitals and the NHSBT donation service work together to achieve excellence Regional Collaboratives to lead local improvement in organ donation, retrieval and transplant practices and in local promotion of donation and transplantation. Ensure that transplant centres have the capacity and surgical expertise and other clinical skills to meet the demands for transplantation as donor numbers increase. Surgical capacity Theatre capacity Develop training programmes to sustain and increase clinicians’ organ donation understanding and expertise. Optimise the processes, timescales, resources and supporting IT at every stage of the pathway from donor identification to long-term survival. Review the current processes for donor characterisation (especially for microbiology and tissue typing). Develop and implement a training and accreditation programme for all retrieval surgeons and extend this to supporting post-mortem technologies when these are introduced. Investigate the feasibility and implications for the provision of a 24/7 provision of expert histopathology advice. Outcome 4: Action by NHSBT and Commissioners means that better support systems and processes will be in place to enable more donations and transplant operations to happen.

Outcome 4 – Progress (1) NORS Review: independent chair appointed & plans in development. New objectives for Regional Collaboratives & CLODs developed. CLODs & Donation Committees Chairs surveyed. Workforce Strategy and SNOD role review in progress: meetings for staff, literature review, benchmarking in progress ahead of discussion with external stakeholders. Organ donation training proposal for ICU trainees agreed – needs funding.

Outcome 4 – Progress (2) Training and accreditation programme for retrieval surgeons in development: engaged with Royal College of Surgeons. Operational Improvement Process Workshops for Duty Office held and initial process improvements underway. Review of IT systems and applications undertaken: initial stakeholder discussions being held to build understanding of the need for a programme of improvement.

Outcome 4 – Performance against target 2013/14

Performance against Strategic Targets Outcome Final Target 2012/13 performance 2013/14 performance TargetTarget dateTargetQ1Q2Q3Q4 Year to Date 180% 31 March % 61.5 % 58.8%59.7%59.6%59.4% 226 pmp 31 March pmp 19.8 pmp 19.5 # 20.5 # 20.9 # 3 Increase of 5% 31 March 2020 Baseline year 0% 0.5%0.6%2.5%5.0%2.7% 474 pmp 31 March pmp 50.3 pmp 50.0 # 53.0 # 55.0 # 1 Consent/authorisation for organ donation – aim for consent/authorisation rate above 80%. 2 Deceased organ donation – aim for 26 deceased donors per million population. 3 Organ utilisation – aim to transplant 5% more of the organs offered from consented, actual donors. 4 Patients transplanted – aim for a deceased donor transplant rate of 74 pmp. # based on rolling 12 month period.

Strategy Governance Groups 2020 Oversight Group Chaired by Elisabeth Buggins Initial meeting held: organisation specific plans due for discussion in May (4 HDs, Professional Bodies etc) Oversight Group Chaired by Elisabeth Buggins Initial meeting held: organisation specific plans due for discussion in May (4 HDs, Professional Bodies etc) Strategy Stakeholder Group Chaired by Prof Gurch Randhawa First meeting held in January, group have agreed to share examples of good practice and initiatives prior to next meeting in May at which Public Behaviour Strategy will be discussed Strategy Stakeholder Group Chaired by Prof Gurch Randhawa First meeting held in January, group have agreed to share examples of good practice and initiatives prior to next meeting in May at which Public Behaviour Strategy will be discussed.

Future challenges Operational Funding – secured for 2014/15 but urgently need longer term agreements. Delivering cost improvements quickly – especially where politically sensitive or IT dependent. Funding for major developments: –Public Behaviour Strategy –Workforce & Role Redesign Strategy –New Perfusion Technologies –Replacing creaking IT systems and applications