Organ donation projects
Key information for projects focusing on living kidney and deceased organ donation.
On this page:
- Areas of focus for organ donation projects
- Key groups for projects focusing on organ donation
- Living kidney donation
- Applying for funding
- Further questions
See examples of projects that have previously been funded by the Community Grants Programme.
Areas of focus for organ donation projects
Clinical need
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, including that families felt it was against their religious or cultural beliefs or they were unsure whether the patient would have agreed to donation.
The shortage of organ donors from these communities matters, 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.
Around a third 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.
Opt-outs
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 several years ago.
However, there has been an increase in the proportion of opt-in registrations from ethnic minority groups added to the NHS Organ Donor Register (ODR) over the past 5 years. In 2018/19, where ethnicity is reported, 7.1% of people from ethnic minority backgrounds opted in to the Organ Donor Register compared to 11.7% in 2022/23.
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.
Key groups for projects focusing on organ donation
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).
Living kidney donation
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.
Black and Asian people are highly over-represented on the transplant waiting list, representing over 33% of those waiting for a transplant.
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.
Transplant centres
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.
Projects focussing on living donation are encouraged to be located within the same city as a transplant centre.
Further questions
If you have any further questions about the programme or previous projects we have funded, please contact community.funding@nhsbt.nhs.uk and we will respond as soon as we can.