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

Alex Lawes 2 2

Another story… “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 3 3

Another story… “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 4 4

Session Objectives 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 5 5

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

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

Consent NORTH WEST DBD 30% 77% + 8

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

Consent NORTH WEST DCD 5% 61% + 10

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