Information for projects focusing on organ donation
On this page:
- Areas of focus for organ donation projects
- Key groups for projects focusing on organ donation
- Special considerations around project location
- Special considerations for projects engaging the Muslim community with organ donation
- Support for projects engaging the Hindu and Jain communities in organ donation
- Further questions
While Black, Asian and minority ethnic consent rates for donation after death have been slowly increasing over the last decade, research shows that families from these communities are far less likely to support donation going ahead than white families. There are a range of reasons for this, and this piece of research by Agroni outlines some barriers and motivations for key groups.
The lower levels of support and the shortage of organ donors from these communities matter because people from Black and Asian communities are more likely to develop high blood pressure, diabetes and certain forms of hepatitis than white people. These conditions make them more likely to need a transplant.
32% of patients waiting for a kidney are from Black, Asian and minority ethnic communities.
Although many Black, Asian and minority ethnic patients are able to receive a transplant from a white donor, for many the best match will come from a donor from the same ethnic background.
Unfortunately, donation rates from these communities are a lot lower than for white people. This means that Black, Asian and minority ethnic patients often wait longer for a transplant.
By increasing the number of deceased organ donors from these communities each year, we will reduce the waiting time gap and save and improve the lives of more patients from Black, Asian and minority ethnic communities.
We know that the proportion of people from Black, Asian and minority ethnic communities who have registered a decision to donate is lower than for white people across the UK.
Also, of those who have told us they are from a Black, Asian, mixed heritage or minority ethnic background, the vast majority have recorded an opt out decision. Much of this ‘opt out’ registration activity has been in response to incorrect information circulating on platforms like WhatsApp.
While it is everybody’s choice whether or not they want to donate, we want to ensure that people base their donation decision on the facts. We also want people to discuss their decision with those closest to them so their loved ones know what they want to happen.
We know that an individual’s faith or beliefs are an important consideration when making their choice regarding organ donation, so initiatives that reassure people around the acceptability of organ donation in the context of their faith or beliefs are important and encouraged.
Any community organisation focused on engaging Black, Asian, mixed heritage or minority ethnic communities can apply for funding to deliver a project around organ donation.
Our insights show us that further engagement is vital in the following groups (click on each group to find out more).
Projects taking place in England
The law around organ donation has now changed in England, so projects with activity in England will need to demonstrate how they will increase awareness levels around the law change and encourage people to record and share their donation decision with their family.
Projects taking place in Wales
The opt out system came into effect in Wales in December 2015 and there are now generally high levels of awareness around the opt out system. For that reason, there is no specific requirement to raise awareness of the law change in Wales. This is reflected in the criteria for projects delivering activity in Wales.
There is, however, still a lot of work to do to engage Black, Asian, mixed heritage and minority ethnic communities living in Wales. We are looking for project ideas that help normalise donation and address misinformation and barriers among the Black, Asian, mixed heritage, minority ethnic and faith/belief communities.
Any applications focussed on engaging the Muslim community should demonstrate:
- how they will work with Islamic faith leaders and diverse Muslim communities to increase understanding about organ donation and the need for donors from a Black, Asian or minority ethnic background
- how they will work with Islamic faith leaders, patients and donors who are supportive of organ donation to broaden the discussion about the humanitarian and social benefits of organ donation
Since 2013, NHS Blood and Transplant has been engaging with Islamic scholars, imams, chaplains and umbrella organisations through its Transplantation in Islam project. A fatwa (religious edict) was published in June 2019 by Mufti Mohammed Zubair Butt, adding to the dialogue and discussion around organ donation and Islam and support from the Muslim community is needed to help disseminate this fatwa and to hold discussions within their community.
If your proposed project focusses on the Hindu and Jain communities, you can obtain support from the Jain and Hindu Organ Donation (JHOD) Steering Group (PDF 80KB).