Increasing Organ Donation in the North West South Asian Community through

Strategic Intervention

Presented by: Agimol PradeepJob title : Transplant Coordinator

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)

Introduction to the topic

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.

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).

2011 Population 64 millionWhites 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

.

Population – 503,200•22.7% non-White

11.2% South Asian

4.8 % Black

The BAME population – Manchester

Current Organ Waiting ListORGAN ASIAN TOTAL ASIAN%

Kidney 1513 8847 17.1%

Pancreas 5 108 4.6%

Kidney/Pancreas 12 321 3.7%

Heart 15 220 6.8%

Lung 10 249 4.0%

Liver 42 516 8.1%

Heart/lung 2 16 12.5%

Other multi organ 5 39 12.8%

Total 1604 10364 15.5%

ETHNICITY ODR

ASIAN 62838

TOTAL RECORDED 4091569

% ASIAN 1.5%

Data obtained from NHSBT on 18/07/2013

Current Donor Register

Kidney Statistics

Ethnicity

Donors Transplant Recipients

Active transplant list patients

2010-2011

2011-2012

2012-2013

2010-2011

2011-2012

2012-2013

2010-2011

2011-2012

2012-2013

Asian 12 15 19 230 215 260 1099 1114 1074

White 917 988 1097 1305 1425 1473 4954 4673 4386

Demographic characteristics of deceased kidney donors and transplant recipients over the past 3 years

(1 April 2010 to 31 March 2013)

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.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

Ethnicity Bangladeshi 76 ( 8.4 %)

Indian 625 ( 68.9 %)

Pakistani 186 ( 20.5 %)

Other 20 ( 2.2 %)

Religion Christian 360 ( 39.7 %)

Hindu 202 ( 22.3 %)

Muslim 305 ( 33.6 %)

Sikh 25 ( 2.8 %)

Education

Other

Post School School

15 ( 1.7 %)

802 ( 88.4%) 105 ( 11.6 %)

Demographic Characteristics907 participants (554 during the event and 353 online)

ResultResult

ResultResult

ResultResult

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

Progress to date

• 1.7% increase from the BME community on the organ donor register following our study related Granada ITV programme.

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

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

References1. 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 volume6. http://www.leadershipacademy.nhs.uk/