Advancing Organ Donation: can we really make it happen?

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Advancing Organ Donation: can we really make it happen? Current Strategy and thoughts out of the box Mr Chris Rudge FRCS National Clinical Director for Transplantation

Agenda Current Strategy Is it working? What more do we know? How can we improve it? What else could we do?

Agenda Current Strategy Is it working? What more do we know? How can we improve it? What else could we do?

Organs for Transplants January 2008 14 Recommendations Legal and ethical issues Clarified roles Acute hospital Trusts Departments of Health/NHS Review of co-ordination & retrieval Training Public promotion Target 50% increase in donation over 5 years

NHS Blood & Transplant A UK Model for Donation National ODO Effective co-ordination and retrieval Education, training and audit Public engagement Department of Health Funding Resolution of ethical and legal issues Performance Management Training Public recognition Acute Hospital Trusts Clinical leads Embedded co-ordinators Donation committees More donors

NHS Blood & Transplant A UK Model for Donation National ODO Effective co-ordination and retrieval Education, training and audit Public engagement Department of Health Funding Resolution of ethical and legal issues Performance Management Training Public recognition Acute Hospital Trusts Clinical leads Embedded coordinators Donation committees More donors

Review of Donor Transplant Recommendation Coordination The current network of Donor Transplant Co-ordinators should be expanded and strengthened through central employment by a UK-wide Organ Donation Organisation Well underway: 189/246 DTCs & 13/29 team managers now recruited; all new teams now established

Ethical, Legal and Professional Issues Recommendation Urgent attention is required to resolve outstanding legal, ethical and professional issues to ensure that clinicians are able to work within a clear and unambiguous framework of good practice Additionally, an independent UK-wide Donation Ethics Group should be established Ethical issues: Donation Ethics Committee established, first meeting held Feb 2010 Legal matters: Guidance published

Legal guidance Guidance published in England and Wales (November 2009) and Scotland (May 2010)

Donation Champions Recommendation Each Trust should have an identified clinical donation champion and a Trust donation committee to help achieve this Well underway. 185/191 Clinical Leads appointed. 155/177 Donation Committees in place

Donation Committee Local governance Recommendation Donation rates should be monitored. Rates of potential donor identification, referral, family approach and consent should be reported. The Trust Donation Committee should report to the Trust Board and the reports should be part of the assessment of Trusts through the relevant healthcare regulator Underway. Donation Activity supplied to all Trusts from August 2009

Summary 1 Good progress with the infrastructure Coordinators Clinical Leads Donation Committees Good progress with legal and ethical support Legal Guidance Donation Ethics Committees Progress with everything else Training Public awareness (>17m on ODR) Research

Agenda Current Strategy Is it working? What more do we know? How can we improve it? What else could we do?

Trends in donation and transplantation 8000 7655 7877 7997 7000 7219 6698 6000 6142 5000 5532 5604 5654 5673 Donors Transplants Number 4000 Transplant list 3000 2311 2247 2388 2396 2241 2196 2385 2381 2552 2645 2000 1000 773 745 777 770 751 764 793 809 899 959 0 2000-2001 2001-2002 2002-2003 2003-2004 2004-2005 2005-2006 2006-2007 2007-2008 2008-2009 2009-2010 Year

Trends in donation and transplantation 8000 7655 7877 7997 7000 7219 6698 6000 6142 5000 5532 5604 5654 5673 Donors Transplants Number 4000 Transplant list 3000 2311 2247 2388 2396 2241 2196 2385 2381 2552 2645 2000 1000 773 745 777 770 751 764 793 809 899 959 0 2000-2001 2001-2002 2002-2003 2003-2004 2004-2005 2005-2006 2006-2007 2007-2008 2008-2009 2009-2010 Year

Deceased Donors 1000 900 800 700 Number 600 500 400 300 200 100 0 2000-2001 2001-2002 2002-2003 2003-2004 2004-2005 2005-2006 2006-2007 2007-2008 2008-2009 2009-2010* Year

Deceased Donors 1000 DBD DCD 900 800 700 37 42 61 73 87 128 159 200 288 336 Number 600 500 400 300 736 703 716 697 664 637 634 609 611 623 200 100 0 2000-2001 2001-2002 2002-2003 2003-2004 2004-2005 2005-2006 2006-2007 2007-2008 2008-2009 2009-2010 Year

Agenda Current Strategy Is it working? What more do we know? How can we improve it? What else could we do?

The falling potential for DBD BSD Patients DBD donors 1600 1400 1200 1000 800 600 400 200 0 2004/5 2005/6 2006/7 2007/8 2008/9 2009/10

Predicted steady-state DBD donors Predicted 1000 950 900 850 800 750 700 650 600 550 500 2004/5 2005/6 2006/7 2007/8 2008/9 2009/10

Potential for DBD donation - Trends in key rates 100 2004-2005 2005-2006 2006-2007 2007-2008 2008-2009 2009-2010 (Apr - Sep) Percentage (%) 90 80 70 60 50 40 72 75 80 76 78 75 75 78 83 85 88 89 60 61 61 62 63 61 46 48 49 50 51 49 30 20 10 0 BSD testing rate Referral rate Family consent / authorisation rate Conversion rate (potential to actual)

90 DBD conversion rate by English SHA 80 East of England 70 Percentage (%) 60 50 40 30 2007/2008 2008/2009 2009/2010 (Apr - Sep) Year

40 DCD conversion rate by English SHA North East 30 Percentage (%) 20 10 0 2007/2008 2008/2009 2009/2010 (Apr - Sep) Year

There are: What more do we know? Summary Fewer patients with BSD likely Fewer patients with BSD diagnosis Fewer possible DBD donors Static number of actual DBD donors Large variations across the UK in both DBD and DCD performance

Agenda Current Strategy Is it working? What more do we know? How can we improve it? What else could we do?

How can we improve it? More DBD donors Admit more patients to ICU Diagnose BSD in emergency medicine Understand the variation across the UK

How can we improve it? More DCD donors Understand the variation across the UK Consensus Report in preparation Donation from emergency medicine Consensus Meeting held on 4 th October

How can we improve it? More organs Better donor management for DBD donors Perfusion systems Hypothermic perfusion Normothermic perfusion re-conditioning Ex vivo lung perfusion

Cardiopulmonary Transplantation Unit Freeman Hospital Newcastle Upon Tyne Institute of Cellular Medicine Ex vivo lung perfusion (EVLP) the Newcastle experience Program started in 2008 Pre clinical phase of program included 5 lungs Clinical phase of the program so far 11 lungs 4 lung transplants performed from donor lungs originally clinically rejected for transplantation

Ex vivo lung perfusion model

Improvement of lung graft during EVLP 1 hour post perfusion 6 hours post perfusion

Clinical Transplant from EVLP

Marginal Organs EVLP September 2010 Lund 7 Patients All Early Survivors Toronto 27 25 Survivors (NB 17 DCD) Europe Madrid 6 all Cat 2 DCD Vienna 6 UK 12 Patients 2 Manchester 6 Harefield 4 Newcastle

Agenda Current Strategy Is it working? What more do we know? How can we improve it? What else could we do?

What else could we do? Move potential donors to a dedicated donation facility

What else could we do? Move potential donors to a dedicated donation facility Move a donation facility to the donor

What else could we do? Move potential donors to a dedicated donation facility Move a donation facility to the donor Limit transplants to people who are registered on the ODR

What else could we do? Move potential donors to a dedicated donation facility Move a donation facility to the donor Limit transplants to people who are registered on the ODR Lower our expectations

What else could we do? Move potential donors to a dedicated donation facility Move a donation facility to the donor Limit transplants to people who are registered on the ODR Lower our expectations Accept a lower transplant success rate Measure outcomes from the time of listing, as well as from transplantation

What else could we do? Move potential donors to a dedicated donation facility Move a donation facility to the donor Limit transplants to people who are registered on the ODR Lower our expectations Put ICU doctors in charge of donation