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
The scale of the donation crisis in BAME (Black, Asian and Minority Ethnic) communities is growing, despite ongoing activities to arrest it. To find a solution, in February 2018 Labour MP Eleanor Smith launched a review into BAME blood, stem cell and organ donation in England. The review took place over four months and included consulting with NHS Blood and Transplant, charities, community organisations, medical professionals and donors themselves.
The review has four main findings:
- The role of local, national and international. The work of local organisations is the most effective way of spreading awareness about donation, but they have very little help to sustain or grow their work. The support of national organisations is key in improving and facilitating this. Meanwhile, growing relationships with international organisations is crucial in accessing donations from across the world, and widening knowledge of best practice.
- Normalisation. In cultures that see donation as a normal act, and openly discuss it, donation rates are significantly higher. There are several key ways to begin normalising the idea of being a donor.
- Young people and education. Working with younger people is extremely effective: it is the best way of securing sustainable donations and raising donation rates in the long term. Formalising this within the education system would prevent myths and misinformation spreading, and move the idea of donation from an oddity to something commonplace.
- Race, culture and religion. The importance of understanding, and being sensitive to, the differing perceptions of donation in different races, cultures and religions cannot be understated. This is crucial in effectively planning what will work for each group.
The review delivers a number of recommendations which attempt to solve the declining numbers of BAME donors. They address current structural and cultural barriers and call on individuals, communities, NHS bodies and the Government to act.
The recommendations include:
- A long term government strategy, co-produced with organisations who work in communities, to increase BAME donation rates.
- Cultural competence training for members of the medical workforce who come into contact with potential donors.
- A formalised commissioning process for BAME community organisations, allowing them to access funding to grow and continue their work amongst the hardest-to-reach communities.
- Donation issues and processes to be added to the national curriculum, to ensure younger people have access to accurate information.
- A specific public health campaign targeting BAME communities, which is developed and co-produced by the community itself.
Eleanor Smith MP, Chair of the BAME blood, stem cell and organ donation review said:
“I am proud to have lead this review into donation in the Black, Asian and Ethnic Minority communities. In blood alone it is estimated that we will need 27,000 new donors in 2018/19 from BAME communities just to keep up with the growing demand. I’ve heard from community organisations, medical professionals, charities and donors themselves about the silent crisis BAME communities are facing. This issue needs to be a national priority as this injustice and unfairness can go on no longer. I’m calling on the Government, NHS bodies, communities and individuals to do more by not only highlighting the scale of the problem, but implementing the review’s recommendations immediately so that we can start saving more lives.”
NHS Blood and Transplant have published our Living Transplant Initiatives resources on their website. The videos, leaflets and other materials developed by the projects are available here.
NBTA Co-Chairs, Kirit Mistry and Orin Lewis, met this week with Parliamentary Under Secretary Department of health MP Jackie Doyle -Price. They discussed the issue of how to raise awareness of organ donation in BAME communities.
NBTA welcomes the announcement of an ‘opt-out’ consultation by the Government.
The focus of the consultation will be on three questions:
- How much say should families have in their deceased relative’s decision to donate their organs?
- When would exemptions to ‘opt-out’ be needed, and what safeguards will be necessary?
- How might a new system affect certain groups depending on age, disability, race or faith?
Orin Lewis, Chief Executive of Afro-Caribbean Leukaemia Trust & Co-Chair of National BAME Transplant Alliance said:
“As a parent of a young man who sadly passed away from Multiple Organ Failure, I gladly welcome the Prime Minister’s decision to instigate a much needed public Consultation on the relative positive and negative merits of England having an Opt Out Donation policy. Looking forward I am expecting a wide spectrum of heated but ultimately constructive views and opinions from key stakeholders across the public domain, with the end goal of ultimately saving many more lives across the wide diversity of patients in England needing an organ transplant.”
The consultation will run until the 6th March 2018.