Deceased donation data in the UK. Paul Murphy National Clinical Lead for Organ Donation United Kingdom

Deceased donation data in the UK Paul Murphy National Clinical Lead for Organ Donation United Kingdom

Deceased donation data in the UK And the story behind it Paul Murphy National Clinical Lead for Organ Donation United Kingdom

A doctor went to work today and three people died

He never met the people who died His employers did not notice He was not censured

Somebody else s patients Somebody else s problem

Number The aching gap in 2006 8000 7000 6000 Deceased donors Deceased donor transplants Active transplant list 5396 5487 5518 5665 5837 6024 6543 7102 5000 4000 3000 2000 2386 2334 2339 2333 2222 2454 2195 2316 1000 745 777 778 770 709 814 753 779 0 1999 2000 2001 2002 2003 2004 2005 2006 Year

The Organ Donation Taskforce What is the root cause? Spain 33.8 Belgium Austria France Italy Ireland Portugal 26.4 24.3 23.2 21.7 20.2 20.1 Norway Germany Sweden Croatia United Kingdom Netherlands Denmark Australia 16.2 15.3 15.1 12.9 12.9 12.8 11.5 9.8 0 5 10 15 20 25 30 35 40 deceased donors pmp, 2006 How could the rates of organ donation be so much higher in so many other countries.?

Organ donation as part of end of life care The paradigm shift Donation should not be viewed as something optional, something to be inflicted upon patients and families after end of life care for the benefit of a third party.

Organ donation as part of end of life care The paradigm shift X Donation should not be viewed as something optional, something to be inflicted upon patients and families after end of life care for the benefit of a third party. Rather, it should be considered to be a fundamental component of end of life care and not denied to patients because they are dying in the wrong place or in the wrong way.

Local donation champions Advocates for change All parts of the National Health Service must embrace organ donation as a usual, not an unusual event. Local policies, constructed around national guidelines, should be put in place. Discussions about donation should be part of all end-of-life care when appropriate. Specialist Nurse for Organ Donation (SN-OD) Clinical Lead for Organ Donation (CLOD) Each hospital should have an identified clinical donation champion, an assigned specialist nurse for organ donation and a Trust donation committee to help achieve this. Non-clinical Donation Committee Chair

The UK framework for organ donation NHS Blood and Transplant National ODO Employment of coordinators Commissioning of retrieval Audit Public engagement Education and training Funding Resolution of ethical and legal obstacles Regulation Public recognition Departments of Health and Professional Societies Clinical leads Embedded coordinators Donation Committees Acute hospitals More patients having their wishes to donate recognised, fulfilled and maximised

Referral rate (%) Increasing Donor Numbers Donor identification and referral DBD DCD 100 90 80 70 60 50 40 30 20 10 There were 893 missed DCD referrals in the UK in 2016/17 0

UK donor numbers, 2007-2013 1600 1400 Donation after Brain-stem Death Donation after Circulatory Death 49.8% 1200 1000 800 600 200 288 335 373 436 507 400 200 0 609 611 624 637 652 705 2007-8 2008-9 2009-10 2010-11 2011-12 2012-13 2013-14 2014-15 2015-16 2016-17

UK donor numbers, 2007-2017 1600 1400 Donation after Brain-stem Death Donation after Circulatory Death 74.7% 1200 1000 800 600 200 288 335 373 436 507 540 510 578 584 400 200 609 611 624 637 652 705 780 772 786 829 0 2007-8 2008-9 2009-10 2010-11 2011-12 2012-13 2013-14 2014-15 2015-16 2016-17

Age of actual deceased donors

BMI of actual deceased donors 100 N= 771 886 942 995 1086 1211 1319 1282 1363 1413 90 19 20 24 20 23 26 24 26 25 25 80 70 Percentage 60 50 40 75 72 70 73 71 68 70 67 68 69 30 20 10 0 6 7 5 7 6 6 6 7 7 5 2007-2008 2008-2009 2009-2010 2010-2011 2011-2012 2012-2013 2013-2014 2014-2015 2015-2016 2016-2017 BMI 0-19 20-29 30+

Number Deceased donors, transplants and the transplant waiting list 2007-2017 8000 7000 7877 7997 7800 7655 7636 7288 7026 6943 6000 5000 6476 Donors Transplants Transplant list 6389 4000 3000 2381 2552 2645 2695 2912 3112 3514 3342 3531 3712 2000 1000 809 899 959 1010 1088 1212 1320 1282 1364 1413 0 2007-08 2008-09 2009-10 2010-11 2011-12 2012-13 2013-14 2014-15 2015-16 2016-17

Cadaveric solid organ transplants in UK

Long term renal replacement therapy in UK 600 500 400 300 200 100 Dialysis Transplant 0

Long term renal replacement therapy in UK Organ Donation and Transplantation in Canada: System Progress Report 2006 2015

Cadaveric solid organ transplants in UK

Cause of death in DBD donors

Implementation of the Taskforce report Relevant and persuasive message Well planned and resourced communications plan Extensive training programme for hospital donation leads Regular local, regional and national gatherings Series of targeted strategy documents

Regional variations in deceased donor numbers, 2016-7 (donors pmp) Country Deceased donors pmp England 21.1 Northern Ireland 22.7 Scotland 25.5 Wales 21.9 UK 21.8

Organ donation challenges Deceased donors pmp, 2015

DD transplants per million population Organ donation challenges Deceased donor transplants pmp, 2015 100 90 91.6 91.4 80 77.1 74.2 70 60 50 40 70 69.6 62.6 60 53.5 53 51.7 50.2 48.3 47.9 44.4 44.1 41.9 37 36.9 34 30 20 10 8.3 0

Organ donation challenges Family consent rates in UK

International refusal rates In 2016/17, 1172 / 3144 families said no. A family refusal rate of 20% 343 additional donors

heart transplants / DBD donor Organ donation challenges Organ utilisation heart transplants / DBD donor, 2013 0.45 0.40 0.35 Strategic objective: 35% 0.30 0.25 0.20 0.15 0.10 0.05 0.00

Are all donation pools the same?

UK framework introduced in 2008 Hospital donation leads, committees Strong principled basis Summary Comprehensive portfolio of guidance and professional development To date 75% increase in donation 56% increase in transplantation Recognised leader in cdcd Challenges Family refusal Organ utilisation Limited donor pool