1. Increasing Organ Donation in the North West South Asian Community through Strategic Intervention Presented by: Agimol Pradeep Job title : Transplant Coordinator

2. What is ‘leadership’? “ The Leadership Framework is based on the concept that leadership is not restricted to people who hold designated management and traditional leader roles, but in fact is most successful wherever there is a shared responsibility for the success of the organisation, services or care being delivered”. (NHS leadership academy)

3. Introduction to the topic

4. Aims of the study Identify the perceptions and beliefs of South Asian (Indian, Bangladeshi, Pakistani) people and to gain a deeper understanding of the barriers towards organ donation. Understand South Asian concept of presumed consent, thereby to inform and direct future national donor recruitment, policy and practice. Increase the cadaveric organ donation rate from the South Asian community.

5. Rationale for the study Need to increase South Asian Donors South Asians three to four times as likely to need a kidney transplant compared to White population (Roderick et al, 1996) South Asian patients have to wait on average twice as long as White patients for a kidney transplant (Rudge et al, 2004). Organs matched by blood group and tissue type increase the chance of a successful outcome, with most suitable matches often being from the same ethnic group (Morgan et al, 2006). Need to educate South Asian communities Limited understanding on scarcity of Asian donors. Lack of awareness, poor understanding and religious uncertainties negatively influencing the topic (Pradeep, 2010).

6. 2011 Population 64 million Whites 89.2% Other ethnic groups: South Asian 5.1% Black 2.5% Chinese 0.7% Arab 0.4% Other 0.6% Mixed race 1.9% 2051 prediction by ONS 2010; Whites 80%, BAME population 20% The BAME population in the UK – 2011 census.

7. Population – 503,200 22.7% non-White  11.2% South Asian  4.8 % Black The BAME population – Manchester

8. Current Organ Waiting List ORGANASIANTOTALASIAN% Kidney1513884717.1% Pancreas51084.6% Kidney/Pancreas123213.7% Heart152206.8% Lung102494.0% Liver425168.1% Heart/lung21612.5% Other multi organ53912.8% Total16041036415.5% ETHNICITYODR ASIAN62838 TOTAL RECORDED4091569 % ASIAN1.5% Data obtained from NHSBT on 18/07/2013 Current Donor Register

9. Kidney Statistics Ethnicity DonorsTransplant Recipients Active transplant list patients 2010- 2011 2011- 2012 2012- 2013 2010- 2011 2011- 2012 2012- 2013 2010- 2011 2011- 2012 2012- 2013 Asian12151923021526010991114 1074 White917988109713051425147349544673 4386 Demographic characteristics of deceased kidney donors and transplant recipients over the past 3 years (1 April 2010 to 31 March 2013)

10. Methods Phase One: Baseline May 2012 – November 2012 Questionnaire survey to capture perceptions/attitudes towards organ donation - translated in three key languages (Urdu, Hindi and Bengali). Also available online via www.southasianorgandonor.org.ukwww.southasianorgandonor.org.uk The questions asked for a either a yes/no response or had a statement with a 4-point Likert scale. The questionnaire had 25 items including: Demographic characteristics (ethnic group, religion, age, gender, education, employment status). Questions eliciting the knowledge, preferences and beliefs of organ donation

11. EthnicityBangladeshi76 ( 8.4 %) Indian625 ( 68.9 %) Pakistani186 ( 20.5 %) Other 20 ( 2.2 %) ReligionChristian360 ( 39.7 %) Hindu202 ( 22.3 %) Muslim305 ( 33.6 %) Sikh 25 ( 2.8 %) Education Other Post School School 15 ( 1.7 %) 802 ( 88.4%) 105 ( 11.6 %) Demographic Characteristics 907 participants ( 554 during the event and 353 online)

12. Result

13. Result Result

14. Result

15. Progress to date Attended 62 events and had meetings with religious & political leaders. Around 1440 individuals joined the organ donor register. 1334 individuals visited my study website (57.8% of this sample visited join the donor website through my study link). 1509 individuals viewed my study YouTube video Presented the study in MDT meetings including European conference Media involvement: Newspapers - both Ethnic - and British, radio talk shows and TV documentaries Best Nurse award by the British Malayali Group

16. Progress to date 1.7% increase from the BME community on the organ donor register following our study related Granada ITV programme.

17. Second phase (Implementation of three interventions) Intervention – 1: South Asian patients will be recruited to the organ donor register by their GP over a 12-month period. Five GP study practices recruited with a high South Asian patient population. Intervention 2: Education of ICU clinicians and SNOD to develop skills and confidence of clinicians to approach South Asian families. Ten ICU sites recruited within highly populated South Asian areas. Intervention 3: Outreach education sessions and media coverage with the help of our steering group members

18. Food for thought “ We cannot wait for great visions from great people, for they are in short supply. We must light our own small fires in the darkness”. (Charles Handy, Writer and Social Philosopher) The measure of life is not its duration, but its donation. Please join the organ donor register and spread this “Gift of Life” message Thank you

19. References 1.Roderick, P.J., Raleigh, V. S., Hallam, L., (1996) The need and demand for renal replacement therapy among ethnic minorities in England. Journal of Epidemiology and Community Healt. 50 (334): 339. 2.Rudge,C. J., Johnson, R. J., O’Neill, J., Fuggle, S. V. and Forsythe, J.L. R. (2004) Renal transplantation for patients from ethnic minorities, [Abstract]. 3.Morgan, M., Hooper, R., Mayblin, M., Jones R.,(2006) Attitudes to kidney donation and registering as a donor among ethnic groups in the UK, Journal of Public Health, 28 (3): 226-34. 4.Pradeep A. (2010). An investigation into the reasons for the scarcity of cadaveric organ donors for renal transplant among migrant South Asians in the North West region of the United Kingdom. Unpublished MSc Dissertation, University of Salford. 5.Office for National Statistics. National Population projections, 2010-based reference volume 6.http://www.leadershipacademy.nhs.uk/http://www.leadershipacademy.nhs.uk/