Family Approach and Consent

1. Family Approach and Consent Jill Hall and Rachel Rowson Dr Paul Murphy 21st May 2013 NORTH WEST 1

2. Alex Lawes 2

3. Another story… 3 “In 2011, my 16 year-old son Aaron was involved in a road crash, where he sustained fatal head injuries. He was hit at just after 5 pm and his life support machine was turned off at just after midnight. Aaron was a kind and loving child, who had often spoken about organ donation. Obviously we never expected in a million years to be faced with the situation that occurred on that night, but one thing that sticks out in my mind is that we were never asked about donation.” Organ Donation Past, Present and Future

4. Another story… 4 “I raise this issue as a pointer to the service for the future. I utterly regret that I was not given the chance to “share” Aaron with someone else, to give life from his death. At the time, I needed someone to raise the issue. I simply didn’t have the fortitude to do so and in the context of difficult decisions that night, the decision to donate organs would have been the easiest of all.” Organ Donation Past, Present and Future

5. Session Objectives 5 Understanding the importance of consent in overall supply of organs for transplantation. Understanding why families say no. Why using a 1st person consent model is often unhelpful. A 3 stage approach – how best to inform and support families through their decision. Understanding the role of the SNOD in the family approach. Organ Donation Past, Present and Future

6. Regional Data Dawn Lee Team Manager – North West Organ Donation Team NORTH WEST 6

7. Where are potential donors in the North West lost? NORTH WEST 6th 3rd Conclusion: DBD, good consent but we could do more upstream. DCD, good approach but consent poor. 2nd 8th 7 Organ Donation Past, Present and Future

8. Consent DBD NORTH WEST 30% 77% +

9. 100 91 92 92 88 85 80 83 75 75 75 60 62 58 52 40 % approaches where SN-OD involved 20 0 North South South South South Eastern London Midlands Northern Scotland Yorkshire Northern East West West Wales Ireland Central Team -------- National rate DBD NORTH WEST 1 April 2012 to 31 March 2013, data as at 4 April 2013 9 Organ Donation Past, Present and Future

10. Consent DCD NORTH WEST 5% 61% +

11. 100 80 85 80 83 80 76 74 69 65 60 % approaches where SN-OD involved 58 53 53 40 37 20 0 North South South South South Eastern London Northern Scotland Midlands Northern Yorkshire East West West Wales Ireland Central Team -------- National rate DCD NORTH WEST 1 April 2012 to 31 March 2013, data as at 4 April 2013 11 Organ Donation Past, Present and Future