Organ Donation and Transplantation in Paediatrics

Deceased donors, transplants and active transplant list in the UK Paediatrics only (<18 yrs)

Transplant waiting lists

Paediatric patients (<18 yrs) on active transplant list at 9 July 2015 KIDNEY

Paediatric patients (<18 yrs) on active transplant list at 9 July 2015 HEART

Paediatric patients (<18 yrs) on active transplant list at 9 July 2015 LUNG

Paediatric patients (<18 yrs) on active transplant list at 9 July 2015 LIVER

Paediatric patients (<18 yrs) on active transplant list at 9 July 2015 SMALL BOWEL

Possible and actual organ donors

Deceased paediatric donors (<18 yrs), by donor type

Deceased paediatric donors (<2 yrs), by donor type 5 years: 1 April 2010 – 31 March 2015 Number

Number of paediatrics (<2 yrs) at each stage of DBD donation process Number 5 years: 1 April 2010 – 31 March 2015

Number of paediatrics (<2 yrs) at each stage of DBD donation process, by year

Number of paediatrics (<2 yrs) at each stage of DBD donation process, by age group 5 years: 1 April 2010 – 31 March 2015

Number of paediatrics (<2 yrs) at each stage of DCD donation process 5 years: 1 April 2010 – 31 March 2015

Number of paediatrics (<2 yrs) at each stage of DCD donation process, by year

Number of paediatrics (<2 yrs) at each stage of DCD donation process, by age group 5 years: 1 April 2010 – 31 March 2015

Reasons for lack of family approach and for family refusal

Reasons for families of eligible DBD donors not being approached Age group < 2 months2-6 months6-12 months12-24 monthsTotal Coroner/Procurator Fiscal refused permission Other Family considered too upset to approach Not identified as a potential donor / organ donation not considered Other medical reason Patient's general medical condition Total Coroner refusals due to non-accidental deaths and police investigations, and social services involvement. Text stated under ‘other’ text for 5 cases includes information regarding police investigations and legal objections 5 years: 1 April 2010 – 31 March 2015

Age group <1 month1-2 months2-6 months12-24 months6-12 monthsTotal Not identified as a potential donor / organ donation not considered Patient outside age criteria Other Patient's general medical condition Coroner/Procurator Fiscal refused permission Other medical reason Family considered too upset to approach Family stated that they would not consent/authorise before they were formally approached Resource failure Total Reasons for families of eligible DCD donors not being approached Coroner refusals due to need to examine all organs for PM, social services/police involvement, some CODs not explained Text stated under ‘other’ text includes information regarding donors being too young for DCD donation (local criteria quoted as 6 months up), too small, police investigations, and no suitable recipients 5 years: 1 April 2010 – 31 March 2015

Age group < 2 months2-6 months6-12 months12-24 months Total Strong refusal - probing not appropriate Family felt the body needs to be buried whole (unrelated to religious or cultural reasons) Family did not want surgery to the body Other Family felt it was against their religious/cultural beliefs Family wanted to stay with the patient after death Family felt the length of time for donation process was too long Total Reasons for family consent/authorisation not given for DBD donation Text stated under ‘other’ text for 3 cases includes no reason given by Consultant following their approach, and emotional reasons from family members 5 years: 1 April 2010 – 31 March 2015

Reasons for family consent/authorisation not given for DCD donation Age group <1 month1-2 months 2-6 months months 6-12 months Total Family felt the length of time for donation process was too long Strong refusal - probing not appropriate Other Family did not want surgery to the body Family wanted to stay with the patient after death Family felt the patient had suffered enough Family felt it was against their religious/cultural beliefs Family felt the body needs to be buried whole (unrelated to religious or cultural reasons) Family were divided over the decision Family concerned that organs may not be transplanted Family did not believe in donation Total Text stated under ‘other’ text for 14 cases includes emotional reasons from family, child’s size, and contesting of medical decision RE WLST leading to a court case 5 years: 1 April 2010 – 31 March 2015