Organ donation projects
Key information for projects focusing on living kidney and deceased organ donation.
The application window for the latest round of funding is now closed.
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.
33% 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).
What is living kidney donation?
Living kidney donation is when a person gives one of their healthy kidneys to someone with kidney failure who needs a transplant (the recipient). This could be a friend or family member, or someone they do not already know.
A successful transplant from a living donor is the best treatment option available for most people with kidney disease. Studies have shown that the average patient survival at 10 years is 90% with a living donor transplant compared to 75% after a deceased donor transplant.
There are currently more than 5,000 people in UK with kidney disease who are on the National Transplant List in need of a kidney. Hundreds of people in the UK die each year in need of a kidney transplant.
The average waiting time for a kidney transplant from someone who has died is approximately three years. For some ethnic groups and people with rare tissue types, the wait can often be five years or much longer.
Why we are including living kidney donation in this programme
As set out in latest organ and tissue donation and transplantation strategy by NHS Blood and Transplant (NHSBT), living donation will become an expected part of care, where clinically appropriate for all in society.
Our Transplant Activity Report waiting list data shows that in particular, Black and Asian adults wait longer for a kidney transplant, on average around 10 and 5 months (respectively) longer than the White population.
Despite Black and Asian people representing about 10% of the UK population, they are highly over-represented on the transplant waiting list (26%).
Living donation sees a higher percentage of matching for these patients and is therefore critically important in reducing the inequity in waiting time.
Coupled with this, major research into kidney patients found strong evidence that people with reduced or low health literacy and/or capability barriers have reduced access to transplantation. We hope that projects invested in health literacy will develop new ways of addressing this.
For many patients in a need of a transplant, the best match will come from a donor of the same ethnic background. Kidney donors and recipients are matched by blood group and tissue type, which means people from the same ethnic background are more likely to have matching blood groups and tissue types.
Use this interactive map to find your nearest living donation transplant centre.
There are 23 adult kidney transplant centres that facilitate living donations for both adult and paediatric recipients. These transplant centres perform living donations and assess potential living donors.
Each project involved in NHSBT’s Living Kidney Transplant Community Investment Scheme is connected with their nearest transplant centre meaning that they can work closely together to improve chances of the projects success and ultimately save and improve lives.