All the major religions and belief systems in the UK support the principles of organ donation and transplantation and accept that organ donation is an individual choice. We understand that you may have questions about whether your faith or beliefs affect your ability to become an organ donor. We're here to help support your decision, and have provided a selection of resources to help make sure you get the information you need. Find out more about different attitudes to organ donation by selecting a faith or belief system below, or alternatively please consult the adviser from your religion or belief group.

1. “The facts”
BAME organ donation in United Kingdom
Dr Shibu Chacko MBE
Specialist Nurse Organ Donation / Donor Ambassador
ODT South East of England
NHS Blood and Transplant, UK
Email: shibu.chacko@nhs.net

2. Definition
Organ donation is the donation of biological
tissue or an organ of human body from a living
or deceased person to a living recipient in need
of transplantation.

3. Challenges
• Organ donation is a very sensitive issue
• Engaging families of potential donors about consent
needs expertise and empathy
• Discussions are particularly challenging when families
have not thought about this before
• Religious and cultural beliefs can play a major role in
individuals decision to donate organs

4. What is UK Organ Donation potential?
• Approx. half a million people die in UK every year
• Only 1% die in circumstances where OD possible
• Only possible if die on a ventilator; so death must
occur in ICU or ED.
• Small potential donors Vs high number of people WL

5. Counting the cost
• Currently over 6500 people waiting
• Average 3-4 patients die every day while waiting for a
transplant
• Last year 457 patients died while waiting.
• 875 people were removed from the waiting list - many
of them died shortly afterwards

6. Cost to NHS
Renal Costs per patient per annum
Dialysis £28,967
Cost over 10 years - £ 289, 677 + Other costs
23,683 patients (2013 data)
Transplantation costs per patient
Assessment & transplant £52, 443
After 1st year £35, 430
Costs per year £7,274
Cost over 10 years - £ 102, 716

7. WHAT ARE THE CHALLENGES?
BAME Organ Donation

8. 1. Lack of awareness on donation
• More aware of services such as Diabetes, stroke, Heart
failure etc. compared to donation (Wilkinson et al 2011)
• Poor awareness of organ donation and transplantation
• Less likely to be aware of ODR
• Less likely to have a conversation with family about
donation
• Not aware of the specific needs of the community for
organs
• Mistrust in healthcare
• Fear of mutilation

9. 2. Representation on NHS Organ Donor register
• Total UK population 66 million (2011 census)
• 23.6 million people on NHS ODR (33%)
• 14% of the UK population is BAME (Black, Asian,
Minority Ethnic Community)
• 2051 Prediction – White 80% and BAME 20%
• Only 1.3% representation Asians, 0.4% Black
• Family consent rates much higher when patient is on
ODR – (93% in 2016-17)
• Soft opt out system in Wales since Dec 2015

10. 3. Consent & Authorisation for donation
• Deceased donation in the UK relies upon family
consent
• Needs NOK consent even if registered on ODR
• UK has one of the lowest consent rates in
Europe
2016-17 data
• Overall consent rate 63% (57% in 2012-13)
• 34% BAME consent Vs 66% Non BAME consent
• First quarter 2017 consent rate 41%

11. European Refusal rates
0
5
10
15
20
25
30
35
40
45
familyrefusalrate
UK Italy Romania Rep
Ireland
Croatia Spain Poland Slovakia Hungary Czech
Republic

12. 4. Transplant waiting list and waiting times
• Currently over 6500 people waiting & 3 are dying
every day
• 28% of the waiting list are BAME (1686 patients in Aug 2016)
• Over 35% of patients on Kidney transplant waiting list
• BAME patients wait longer for a transplants
• Longer waiting times put patients at greater risk of
dying.

13. Number of donors and Transplants

16. 5. Issues with Tissue typing and match
• Difficulty with blood and Tissue typing match
• More successful and likely if donor from the same
ethnicity
• Some tissue types are more common in certain
ethnic groups of the population: – Meaning that a
patient is more likely to be matched with a donor
from a similar ethnic background

17. 6. Risk of Organ Failure
• Greater risk of developing organ failure - complex
reasons.
• Genetic predisposition, increased prevalence of
underlying conditions, and poorer access to, and uptake
of services
• Type 2 Diabetes Mellitus – 6 time higher compared to
whites – leading to renal complications
• There is high incidence of: Hypertension, Cardiovascular
issues
• Hepatitis B &C – More common – Liver damage
• The resulting end organ failure and the need of
transplants are higher.

18. 7. Actual number of BAME Donors (2016-17)
• Only 6.4 % of the actual deceased donors
• In 2016-17 – 62 donors (40% Asians, 30% Black and 29%
Other)
• 22% of all kidney transplant recipients were from
BAME – But mostly from white donors
• BAME Transplant recipients (498 in 2010-11 to 748 in
2015-16)
• BAME patients now make up 22% of all transplant
recipients

19. Research findings
• Qualitative studies among the African- Caribbean,
South Asian & Polish communities
• “They (doctors) would finish me off before I was dead”
• “ I don’t like the idea of my relatives having to see my body
been carved up”
• “ I’m not sure about life after death, but if there is life, I want to
go and complete”
• “If the religious leaders gives us a clear cut option on this
matter, then we have less confusion. More discussion and
information will help us to proceed in this direction”
(Randhawa et al, 1995, 1998, 2010)

20. Initiatives

21. Organ Donation Taskforce 2007
• To identify barriers to
donation and
transplantation and to
recommend solutions
within existing
operational and legal
frameworks in England.

22. Organ Donation taskforce 2008
14 recommendations
• Clarified roles (Acute Hospital trusts, Department of
Health / NHS)
• Review of the co-ordination & retrieval – Role of
intensivists
• Training for nurses, doctors, donation committee chairs
• Legal, ethical issues
• Public outreach and education
TARGET : 50% increase in donation over 5 years
ACHIEVED√

23. Faith Action Plan 2013
• NHSBT organised a Faith Action summit in 2013
• The recommendations are collated into an action plan
(12-18m)
• Identified more engagement is needed between
NHSBT, faith leaders, Donation committees & BAME
organisations
• Faith leaders committed to working with NHSBT
• Need to engage at local level – via events and
meetings
• Opportunity for those working in health care settings
• Further plans are in progress for a second summit
currently

24. Donor Ambassadors
• Introduced the programme in 2015
• Initially recruited 6, then a further 14 from
BAME and non BAME background.
• Extensive training – complex communications
• DA supported the marketing teams in various
campaigns
• Role involved with active engaging with
communities, resource person, a community
leadership role and being an advocate for
donation

25. Results
• DA worked among various communities and attended
events all around the country.
• Current active DA’s average over 6 events a year
• Supported by the BAME Network of the organisation
• Achieved over 1000 new registrations to NHS Organ
Donor Register and to the Blood donor register
specifically from the BAME communities
• And the work continues!

26. Donor Ambassadors

27. UK Policy Drivers
Caring for multi-ethnic
communities guide 2020 Strategy

28. Other initiatives – Developing a ‘whole systems’
engagement programme in UK
• Peer education programmes
• Translating leaflets into regional languages
• Developing specific BAME campaigns
• Working with MP’s who represent constituencies with high
BAME population
• National : Role models, Celebrities, Sports stars, Musicians,
Medical schools etc
• Community ownership of the issues- requires local
grassroots approach, community ambassadors, OD
Committees, schools etc