More organ donation needed from black communities

An innovative conference addressing the challenges facing black communities and organ donation was held at the Cavalry Church of God in Christ (COGIC) in Tottenham.

The conference was organised by the organ donation committee of the Royal Free Hospital and attracted 85 people. They heard about the process of organ donation from a transplant surgeon, a specialist nurse for organ donation and a health psychologist.

Patients were also on hand to tell their stories, a kidney transplant recipient and liver transplant recipient both shared with the audience how organ transplantation had transformed their lives. The sister of a deceased donor also explained how her brother saved lives by donating his organs and described the discussions within her family which led to this remarkable gift of life.

The Mayor of Haringey, Cllr Stephen Mann, attended the conference and thanked everyone for organising this important event.

David Myers, Chair of the Royal Free Hospital organ donation committee and president of the Royal Free Hospital kidney patients association said: “We have to address the enormous gap between the number of black patients who need an organ transplant and the number of black organ donors from the community served by the Royal Free Hospital.”

“The conference highlighted the main challenges we face and how we can address them. I am delighted that we worked in partnership with the COGIC to address this important issue and hope to do so with other communities in the future.”

Janet Brown who attends COGIC said: “We were happy to host this conference. As a church, we see the need for people to be enlightened, educated and informed about organ donation. It was very satisfying to see so many members of our community enjoying the day. We are hoping to do more work in this area in the future.”

Alice Workman, specialist nurse for organ donation at the Royal Free Hospital, said: “It’s vital that all communities know about the importance of organ donation to ensure people can make an informed decision about signing up to the organ donor register. It’s so important that you discuss your wishes with your friends and family.

“Donors can give the gift of life and not only transform the recipient’s life but also touch the lives of so many others. It can also be a great source of comfort for the donor’s family that the deceased has chosen to do this for others.”

Notes to editors

Media contacts: rf.communications@nhs.net

About the Royal Free London NHS Foundation Trust

The Royal Free London’s mission is to provide world class expertise and local care.

We attract patients from across the country and beyond to our specialist services in liver and kidney transplantation, haemophilia, renal, HIV, infectious diseases, plastic surgery, immunology, vascular surgery, cardiology, amyloidosis and scleroderma. We are a member of the academic health science partnership UCL Partners, which brings people and organisations together to transform the health and wellbeing of the population.

The Royal Free London is one of four trusts across the NHS to be chosen to develop a group model enabling us to share services and resources more effectively across hospitals to improve the experience of patients and staff.

Barnet Hospital, Chase Farm Hospital and the Royal Free Hospital are part of the Royal Free London group, and North Middlesex University Hospital NHS Trust became its first clinical partner in September 2017.

For more information about our group structure visit www.royalfree.nhs.uk/the-royal-free-london-group-model and for general information about the trust visit www.royalfree.nhs.uk

  1. Relevant data on organ donation:

9% of those waiting for an organ transplant are from black communities nationally; this means that there were 634 black patients waiting for an organ transplant in March 2017.

There were only 22 deceased black organ donors in the UK in 2016/17

Nearly 20% of those waiting for an organ at the Royal Free Hospital are from black communities.

  1. The five main challenges facing organ donation among black communities in the UK:

  • Lack of knowledge about organ donation

  • Less willing to discuss organ donation with family members

  • Donation deemed as contrary to religious and cultural beliefs

  • Concern about bodily integrity and intactness related to donation

  • Less trust in doctors and the healthcare system

  1. Further contacts for information:

Kirit Modi, Hon President of the National BAME Transplant Alliance (NBTA) at kiritmodi1@hotmail.com

Alice Workman, Specialist Nurse for Organ Donation at Alice.Workman@nhsbt.uk

Nii Plange, Acting Chair of the Royal Free Hospital Kidney Patients Association at nii.plange@me.com

Patricia Gooden, Acting Vice Chair of the RFHKPA at patriciagooden59@btinternet.com