The coordinating voice for Black, Asian, Mixed Race and Minority Ethnic transplant donation

NBTA response to NHSBT 2017-18 report

The National Black, Asian and Minority Ethnic Transplant Alliance (NBTA) welcomes this supplementary report (from the annual Organ Donation and Transplant Activity Report) specifically on organ donation and transplantation in Black and Ethnic Minority Communities, which reflects the particular need for more donors from minority communities, and the resulting disadvantages experienced by BAME patients.

The two 2020 strategies for deceased and living transplantation were published by NHSBT and the four UK governments. For clarification purposes, Organ donation is split between deceased and living domains and NHSBT which is responsible for the professional support to clinical teams in hospitals and for the successful National Living Donor Sharing Scheme, whilst NHS England and other commissioners commission Living Donation and Transplantation across the UK.

However, despite the overall national 3.6% year on year increase on transplants and registrants including 6.8% from BAME communities, the NBTA has deep concerns about the state of the nation in relation to BAME living and deceased registrations, and the demonstrative gap between the need for kidney transplantation (34%) and the number of kidney transplants (28%) taking place for BAME patients. Most worryingly, the family consent rate for deceased donation among BAME families remains significantly low.

For various personal, cultural, religious and historical reasons many BAME individuals and families have generation after generation rigidly resisted registering as deceased or living organ donors let alone consenting to actual transplantation of organs of their loved ones. NBTA and NHSBT also acknowledge that apathy and low prioritisation of the subject matter of organ donation is highly prevalent in various BAME Communities as well as within the majority UK white populace.

The overall lack of significant increases in registration and consent/authorisation rates presents a visibly disturbing organ donation landscape. NBTA along with NHS Blood and Transplant (NHSBT) and other stakeholders recognises that there is a substantial body of educational and awareness work that needs to be undertaken with key BAME Community/Cultural/Religious influencers and gatekeepers in order to gain the trust and respect of individuals and families from the very diverse Black and Ethnic Minority Communities.

NBTA believes that important but in hindsight minor steps towards changing attitudes and behaviour have been instigated in previous years by ground breaking initiatives such as Kidney Research UK’s Peer Educators Projects, ACLT’s Peer to Peer school Mentoring & Giving the Gift of Life projects, Seventh Day Adventist’s Family Circle project, Amjid Ali’s Transplantation within the framework of Sharia research work, Gift of Living Donation (GOLD) Home based educational intervention project, South Asian health action charity’s specific Hindus, Sikhs and Muslims Embrace Organ donationcampaign and Upahaar’s Live Life Give Life South Asian Stem Cell and organdonation campaign

etc. These examples and more have provided various methodologies that need to be built on to develop and test solutions and to be able to identify the lessons for implementation for others to follow.

Indeed NHSBT’s recently commissioned project such as the Living Transplant Initiative and previously commissioned Faith and Organ Donation Action Plan demonstrated that there needs to be a step-change in the approach to community engagement, whereby the communities are co-designing and leading the community engagement. However more significant resource investment towards changing the “Messenger rather than the Message” is urgently required in order to change the continuing status quo and lack of inertia especially from Pakistani, Bangladeshi, Black Caribbean, Chinese and African ethnicities as they are the most poorly represented on the ODR relative to the BAME organ donation demand and current UK population. In other words, to understand and tackle the current disparity in the BAME community between donating and receiving organs, NBTA members along with other associated BAME strategic influencers should be resource invested and entrusted by Commissioning organisations such as NHSBT and other key stakeholders such as the Department of Health to redeveloping and implementing a national strategy for raising awareness amongst all major BAME communities. This will be in order to instil a higher level of trust via personal, cultural and religious empathy culminating effective engagement with BAME potential donors and patient families. This is an urgent call to action from NBTA to ensure equity in organ donation.