Stephen Cole SICSAG September 2009 “making donation usual, not unusual”

Deceased donors, transplants and active transplant list : UK

 Increasing numbers waiting for transplant

 What this means is one extra donor per year from each donating unit in Scotland

Recommendation 3 Urgent attention is required to resolve outstanding legal, ethical and professional issues in order to ensure that all clinicians are supported and able to work within a clear and unambiguous framework of good practice. Additionally, an independent UK- wide Donation Ethics Group should be established. Organs for Transplants Ethical, legal and professional issues

Role of NHS Donation as part of EOL care Recommendation 4a All parts of the NHS 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 part of all end-of-life care when appropriate.

Recommendation 4b Each Trust should have an identified clinical donation champion and a Trust donation committee to help achieve this. Role of NHS Clinical leads/ Donation Champions

Role of NHS Minimum referral criteria ?? Recommendation 5 Minimum notification criteria for potential organ donors should be introduced on a UK-wide basis. early referral is vital The DTC should be notified as soon as the decision to perform brainstem death tests has been made. The DTC should be notified as soon as the decision to withdraw active treatment has been made.

Donation Committee Local governance Recommendation 6 Donation rates in all Trusts should be monitored. Rates of potential donor identification, referral, approach to the family and consent for donation 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. “making donation usual, not unusual”

Potential Donor Audit Possibly BSD, not tested Reasons for not testing (approx 350 / year)

 Carried out in every ICU in UK on monthly basis.  Uses WW data  Clinical Engagement with this process is vital  NHS BT performance management organisation

 Patients with catastrophic brain injury who never get to ICU,  Failure to test,  Poor consent rates  failure to optimise donor physiology,  and donation after cardiac death.

Role of NHS Brainstem death testing Recommendation 7 BSD testing should be carried out in all patients where BSD is a likely diagnosis, even if organ donation is an unlikely outcome.

Heartbeating donors in UK

91% is the consent rate when patient is known to be on ODR

Consent rates by Region < 30% 30 – 39% 40 – 49% 50 – 59% 60 – 69% 70 – 79% > 80%

Donation after Cardiac Death

 Slow planned development across Scotland  National protocol  Adults with Incapacity v’s Human Tissue Act  Organ Donor Register  OUTSTANDING ETHICAL & LEGAL CONCERNS

 Resolution of ethical and legal issues (R3)  Performance management (R6)  Training (R11)  Recognition of donors (R12)  Guidelines for Procurator Fiscal Service (R14)

Heartbeating donors in the UK

 donation after cardiac death  transfer from A&E  donor stabilisation  early referral to DTC  early consultation of ODR

 Ethical issues  Planning for independent Ethics group completed  Home established  High profile chair  First meeting in May 2009  Legal issues  QC opinion received  Being translated into policy statement

Clinical Lead What it is………. Development of clinical collaborative –action plan Guideline development –diagnosis of death –donor identification & referral –donor management –family approach Local training programs

Clinical Lead What it is………. Potential Donor Audit –Improved data collection –Extension to A&E –Local ownership Review of the big issues –A&E –NHBD –consent

 1. Raise public and professional awareness  2. Increase numbers on ODR  3. Uniform practice within units and between units  4. Resolve outstanding ethical & legal concerns  5. Engagement with DTC to ensure PDA data is accurate.