05 March 2019 – For immediate release
BAME group welcomes opt out for organ donation
A national BAME (Black, Asian, Mixed Race and Minority Ethnic) group has welcomed the change in law in England on organ donation this week. The introduction of an opt out system was agreed by the House of Lords on 26 February 2019 and now awaits Royal Assent. The law will encourage everyone to make a decision on organ donation after death and those who do not make a decision will fall into the “presumed consent” category from 2020.
Kirit Modi, Hon President of the National BAME Transplant Alliance said:
“We welcome this change in law because it will encourage more people to have conversations about organ donation and we anticipate more organ donors in the future. It is important to emphasise that close family members will continue to be involved in conversations with the specialist nurse for organ donation before any final decisions are made”.
Sadly around three people die every day in the UK in need of an organ while more than 1,000 families say no to organ donation every year. It remains vital that people continue to have conversations with their family, to remove any uncertainty and offer peace of mind for those who find themselves facing the tragic loss of a loved one. There are considerably more people from BAME background waiting for an organ but the number of people from BAME background who have signed up to the Organ Donor Register is extremely low.
There is a very important role for BAME communities, faith groups and others in explaining the change in law in their communities over the next year by working in partnership with NHS Blood and Transplant.
Kirit Modi said that NBTA is actively working with NHSBT is planning an effective communications campaign and is also ready to support BAME communities in planning how they can get this important message to members of their communities.
Kirit Mistry Orin Lewis Co-Chair NBTA Co- Chair NBTA
For media queries, please contact Samir Jeraj (firstname.lastname@example.org) or 0207 428 1886.
Organisations representing a diverse range of faiths and communities in
England and Wales are joining the campaign to address the urgent need for
black, Asian and minority ethnic organ donors.
Twenty five projects which aim to encourage people from these backgrounds
to become lifesaving organ donors have secured funding after bidding for a
share of a £140,000* Community Investment Scheme funding pot.
The scheme is part of a Government campaign led by NHS Blood and
Transplant, with support from the National BAME Transplant Alliance (NBTA),
to break down myths and barriers and increase support for organ donation
among black, Asian and minority ethnic communities.
Health Minister, Jackie Doyle-Price, said: “The projects receiving funding
today will spread the message about the priceless gift of organ donation up
and down the country – at a community level, where it has the strongest
“If you are black or Asian, you will wait on average half a year longer for a
matching donor than if you are white. Those six months could be a matter of
life or death. We must address this by empowering communities to own the
conversation around organ donation.
“Giving the gift of an organ is a deeply personal decision and I hope that the
projects funded through this scheme will help people to make an informed
Organisations representing Jain, Sikh, Hindu, Muslim, Swahili, black and
Asian Christians, black African and Caribbean and multi-faith groups were
among the successful bidders from a field of 40 applications.
The organisations are now preparing to launch their projects which will reach
people across London, the Midlands and the North West of England, as well
as in Cardiff, Bristol, Leeds and Newcastle.
The projects vary and include awareness events and workshops, outreach
activity at community and faith gatherings, information leaflets, videos and
films, and online and social media campaigns.
The Caribbean & African Health Network (CAHN) in Greater Manchester has
received funding for its Precious Life Savers project which aims to engage
black faith leaders and their congregations.
Rev Charles Kwaku-Odoi of CAHN said: “It was through our work with NHS
Blood and Transplant specialist nurses that we became aware of the
disproportionately high number of black people waiting for a transplant, and
the shortage of donors.
“Over 80 percent of our community are involved with a church, and we feel
that recruiting faith leaders as ambassadors and engaging people in church
settings can be really effective ways to reach people with a positive organ
Faye Bruce, Chair of CAHN, said: “This Community Investment Scheme
funding will help us to carry out this work in churches across Greater
Manchester, helping to overcome the cultural myths around organ donation
and raise awareness of this urgent issue affecting our community.”
The scheme was open to any faith or community-based organisation working
within black, Asian and minority communities in England and Wales.
Organisations were invited to bid for funding by outlining how they could build
support for organ donation, and all applications were reviewed by an
independent judging panel.
Anthony Clarkson, Interim Director of Organ Donation and Transplantation for
NHS Blood and Transplant, said: “The number of applications for funding
reflects the passion for promoting organ donation and saving lives that exists
in organisations across the spectrum of faiths and communities in the UK.
“Fantastic work is already taking place within communities right across the
country. We are delighted to have been able to formalise our support for this
community-led work through the Government’s campaign and this funding.
“Hearing a positive organ donation message from a trusted, community-led or
local organisation will, we hope, encourage more people from black, Asian
and ethnic minority backgrounds to decide that they want to be a lifesaving
organ donor and to share that decision with their families.”
The organisations leading the projects will evaluate their work after the
projects have finished in the summer. This insight will help understanding
around the different approaches that can be taken to break down barriers
towards organ donation.
The National BAME Transplant Alliance (NBTA) is pleased to invite you to bid for funding of between £2,000 and £3,000 to promote living kidney donation among BAME groups in England. This is part of the Living Transplant Initiative (LTI) which is managed by NBTA and funded by NHSBT. Further details about LTI are available from the NBTA website http://www.nbta-uk.org.uk/living-transplant-initiative/ .
Your bid should be submitted to Tracey Bignall (email@example.com) by 8 August 2018 and your project should be undertaken between September 2018 and March 2019. The LTI Steering Group will consider all bids and will confirm funding for the successful bids by the end of August 2018.
The LTI has three key targets as follows.
- To increase people from BAME groups who are interested in living donation after finding out about it.
- To increase people from BAME background who volunteer to being assessed as potential living kidney donors
- To increase people from BAME background who become living kidney donors.
All bids should include responses to the following and the attached form should be used to submit bids.
- Evidence of previous experience of promoting organ donation within a BAME community.
- Outline of proposed project, with clear objectives, project plan, members of project planning group, the extent to which the project will contribute to the three targets set out above, and a budget plan.
- All project leaders will be required to submit an end of project report which will be published by NBTA and NHSBT after March 2019.
The LTI Steering Group will both monitor all projects and offer support, as needed. A copy of the Interim LTI report from 2017/18 is available at: http://www.nbtauk.org.uk/2018/07/project-to-increase-living-
Any queries about this invitation to bid for funding should be sent to Kirit Modi, Chair of the Steering Group (firstname.lastname@example.org) who is happy to advise as you prepare your bids. We look forward to receiving your bids.
Government campaign will focus on urgent shortage of black, Asian and minority ethnic organ donors as one in five who die waiting for a transplant is now from these communities
Today the Government announces a new campaign in England to address the urgent need for donors revealed in NHS Blood and Transplant’s annual report into organ donation in black, Asian and minority ethnic communities.
The campaign aims to increase donation rates by raising awareness and breaking down barriers to donation within these communities. The Government has commissioned NHS Blood and Transplant to deliver the campaign with support from the National BAME Transplant Alliance (NBTA).
The NHS Blood and Transplant report reveals only seven percent – 114 – of donors last year were from black, Asian and ethnic minority backgrounds. This figure is increasing however, thanks to more black, Asian and ethnic minority families saying yes to donation when asked in hospitals.
NBTA Co-Chairs Kirit Mistry and Orin Lewis said: “On behalf of our members we welcome the Government’s commitment to launching a campaign to increase organ donors from black, Asian and ethnic minority communities.
“We are also encouraged to be given the opportunity to work in partnership to engage recipients, donors, communities, organisations, and stakeholders to help shape this campaign from a culturally and faith-based sensitive perspective.
“NBTA as the co-ordinated voice for black, Asian, mixed race and minority ethnic communities in transplant donation will help to build trust and create dialogue to inform our communities of the need for more organ donors from these backgrounds, and spread the message of organ donation is a gift of life so help save more lives.”
The full report into organ donation for black, Asian and minority ethnic communities in 2017/18 can be viewed https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/11669/bame-organ-donation-and-transplantation-data-2017-18.pdf.
Project to increase living kidney donation among ethnic minority communities inspires 16 potential donors in its first year
A father who donated a kidney to his two-year-old son is one of the first people to become a living donor through a project to increase living kidney donation among black, Asian and ethnic minority communities.
Lawrence Donaldson was supported through the process thanks to the Living Transplant Initiative, a pilot managed by the National BAME Transplant Alliance (NBTA) and funded by NHS Blood and Transplant.
The project funds community and faith-based organisations to promote living kidney donation. In its first year it has supported Lawrence and two others to become living donors and 13 others to begin the assessment process. A further 150 people have expressed an interest in living donation.
The outcomes are significant given there were only 143 living kidney donors from black, Asian and ethnic minority backgrounds in the UK in 2016/17.
Lawrence’s son Mason was born with posterior urethral valves (PUV), a condition which affects the urethra. It damaged his kidneys so badly that he was forced to rely on dialysis from the age of just six months.
Lawrence, 26, was supported through the living donation process by the Afro-Caribbean Leukaemia Trust (ACLT), one of four organisations piloting the Living Transplant Initiative. Mason is now three and doing well after his transplant. Pictured left: Mason a day after his transplant.
“Once I knew I was a match there was no doubt I would donate to Mason. But support is crucial when you are going through the living donor process and I can’t speak highly enough of the support I had through the project,” said Lawrence, who works in the Navy.
“Had I not been a match, Mason may have waited years for a transplant. In some ethnic minority communities there is a cultural belief that you can’t live well with one kidney, and a stigma around living donation. This must change so more people like Mason can get the transplant they desperately need.”
Pictured above: (left) Mason 12 days after transplant; (right) Lawrence a day after surgery
There is an urgent shortage of organs for transplant for people from all backgrounds but the problem is particularly acute for kidney patients from black, Asian and ethnic minority communities.
But black and Asian families are less likely to agree to deceased organ donation, which means black and Asian kidney patients rely disproportionately on living donations.
- The outcomes of the first year of the two-year Living Transplant Initiative are published today in an interim report (pdf).
Kirit Modi, Chair of the NBTA Steering Group for the initiative, said: “I am delighted by the outcomes of the Living Transplant Initiative in the first year.
“While three living kidney donors may not appear a large number, when you consider there were only 143 living kidney donors from ethnic minority backgrounds last year, it’s a really positive start.
“It proves that targeted projects led by well-established BAME or faith-based community groups, with support from local hospitals and others, can break down barriers and be effective in increasing living kidney donations.
“Once the second year of the initiative is completed, we should consider using this new model of working to promote deceased and living organ donation among black, Asian and ethnic minority groups nationally.”
Most living donations are between family and friends. People can also choose to donate to a stranger, when their kidney is matched anonymously to a suitable person on the waiting list.
Donations to a stranger are especially important because they can start transplant chains, where more than one person benefits.
Lisa Burnapp, Lead Nurse for Living Donation at NHS Blood and Transplant, said: “The Living Transplant Initiative has created awareness within faith-based and minority ethnic communities and has inspired people to find out more about what is involved in becoming a living kidney donor.
“Having the conversation is the first important step. The next year offers a real opportunity to build on this success and to see more people volunteering to donate, either to a loved one or as an anonymous donor in the living kidney sharing schemes, so that as many patients as possible can benefit from a successful transplant.”
There were four projects in the first year led by groups within the Hindu, Jain, black and Sikh communities:
- BAPS, Hindu Mandir at Neasden, focusing on the Hindu community in North West London, led by Prof Sejal Saglani.
- Vanik Council UK, focusing on the Jain community in North West London, led by Manharbhai Mehta.
- ACLT, focusing on the black community in South London, led by Orin Lewis.
- Warwick University, focusing on the Hindu and Sikh communities around Leicester, led by Professor Caroline Meyer.
Swati Bhagat, 37, (pictured below with her mother Kanchan) donated a kidney in 2011 to her mother Kanchan Bhagat, who had renal disease. The healthcare worker from Watford spoke at a Living Transplant Initiative event held by BAPS at the Neasden Temple in London.
“Too often people consider living kidney donation only when a family member or a friend is in need of a transplant,” said Swati.
“The beauty of the Living Transplant Initiative is that it takes the message to communities outside of the hospital setting, to people who have never come across living donation before, let alone considered it.
“We need more people in our communities to step up and consider living donation and to break down the myths and perceived cultural taboos that surround it.”
Further information about the Living Transplant Initiative can be found at www.nbta-uk.org.uk
More information about living donation can be found at www.organdonation.nhs.uk/living-donation