In May 2020 the law around organ donation in England changed meaning all adults in England are now considered to have agreed to be an organ donor when they die, unless they have recorded a decision not to donate or are in one of the excluded groups.

The charities National Kidney Federation (NKF), National Black, Asian, Mixed Race, and Minority Ethnic (BAME) Transplant Alliance (NBTA), and the Jain and Hindu Organ Donation Alliance (JHOD) marked the occasion with an Organ Donation Summit held at City Hall in London on 19 May 2023, hosted by Assembly Member Krupesh Hirani.

A panel of guest speakers presented the latest statistics on organ donation and transplantation and how ethnic minority community groups are taking action to address inequalities in provision.

The summit revealed that there has been limited impact of the change in law for several reasons, including COVID-19. The consent rate of family members who agree to donate the organs of loved family members after death has gone down from 72% in 2020 to 70% in 2022. This reduction is also present in the consent rates among Asian and Black potential donors. The initial evaluation undertaken by the London School of Hygiene and Tropical medicine on the impact of the change in law indicates that the new law is not making things easier for ethnic minority families “at the bedside” when specialist nurses discuss organ donation with them.

Six recommendations emerged from the summit are listed below.

  1. For the Secretary of State for Health and Social Care
    To urgently develop and publish the Implementation Plan for the “ Honouring the gift of donation: utilising organs for transplant” report, given that its implementation must be cost neutral.
  2. For the Mayor of London
    To arrange a debate on Organ Donation and Transplantation to mark Organ Donation week in September 2023.

    3. For Leaders of London Councils
    To promote organ donation within the boroughs during Organ Donation Week in September 2023 and to consider the approach taken by Brent and Harrow Councils.

    4. For NHS Blood and Transplant (NHSBT)   
    To work in partnership with the NKF, NBTA, JHOD and the London Specialist Nurses Team to produce a Guidance Pack to support London boroughs in promoting organ donation locally during Organ Donation Week in September 2023.  

    5. For NHSBT 
    To consider the findings of the impact of the change in law to opt out in England presented at the Summit and to implement recommendations of the final report due in Autumn 2023 from the London School of Hygiene and Tropical Medicine.

    6. For NKF, NBTA and JHOD
    To highlight the outcomes from the Summit and to encourage Kidney Patients Associations, Organ Donation Committees, the London Kidney Network and ethnic minority community groups in London to take on leadership roles to increase awareness about organ donation and help reduce inequality of provision.

Orin Lewis, Co-Founder & Chief Executive of ACLT and Chair of NBTA (National Black, Asian, Mixed Race and Minority Ethnic Transplant Alliance) commented:

“The 19th May Organ Donation Summit which was held at City Hall (London), was a well-executed 3rd law change anniversary event organised by a 'triumvirate' consisting of JHOD, NBTA and NKF under the stewardship of Krupesh Hirani, a member of the London Assembly Health Committee.

The attendees were treated to a series of well-balanced presentations and talks by key stakeholders representing data statistics, research findings, cultural & religious projects and data families, etc. However, the overall outcome has ultimately resulted in creating new challenges, but also new opportunities to raise more defined and clarified awareness initiatives to circumvent the relative present day slowness in cultural representation on the Organ Donor Register.”

Kirit Modi, MBE, Chair of JHOD, said:

“The findings of the impact of the change in law in England reported at the Summit are disappointing. We face a great challenge in addressing the reasons for this, particularly among ethnic minority communities. However, I am optimistic that by better collaboration between NHS staff, ethnic minority community groups, local authorities and NHS Blood and Transplant (NHSBT), we can reverse the trend and address long standing inequalities.

Andrea Brown, Chief Executive, National Kidney Federation said:

“There is a lot of work to be done to continue improving the existing challenges that we face around organ donation and transplantation, particularly amongst the ethnic minority communities. With the recommendations that have been set out following the Summit, we and the rest of the organisations can continue our aim to provide a stronger and more vocal alliance together.”

For further details of  the agenda, guest speaker profiles and presentations from the summit, visit: LINK