Phone buddy project raises awareness of living kidney donation

An innovative programme aims to encourage more Black Londoners to consider living kidney donation to treat their end-stage kidney disease.

The organisation Gift of Living Donation (GOLD) has partnered with three London trusts including Guy’s and St Thomas’ and King’s College Hospital to raise awareness in Black communities of the importance of living kidney donation, and to help tackle existing health inequalities.

Through the programme, eligible kidney patients are partnered with a phone buddy. The buddy gives tailored information and dispels myths about organ donation and transplantation. This is to encourage more Black patients to first consider having a kidney transplant over dialysis, and to empower them to ask friends and family to think about being a living kidney donor, hopefully increasing overall rates of transplantation.

Living organ donation can be a difficult concept for many patients, but can be particularly challenging for Black patients due to existing religious or cultural mindsets, taboos and myths about their kidney condition and organ donation. As a result, Black patients with kidney disease are less likely than White patients to even broach conversations about living kidney donation. This can mean their friends and families are not given the chance to donate a kidney.

Guy’s and St Thomas’ has one of the most diverse patient populations in the UK, but from 2000 to 2022, of the 4,109 kidney transplants which took place at the Trust just 19% of transplants to Black patients were from a living donor, compared to 46% of transplants to White recipients.

Meanwhile, just 6.5% of transplants to Black patients at the Trust were done pre-emptively (before a patient has to go on dialysis), compared to nearly a quarter (24%) of those to White recipients.

Pre-emptive transplants are the best option for suitable people with kidney disease as the offer a longer lifespan and better quality of life. This is because patients are generally fitter before starting dialysis and have a better chance of recovering quicker from their surgery, with less chance of their body rejecting the new kidney. 

Through the peer phone buddy scheme, clinicians ask eligible patients if they would consider having a buddy to talk through the process of living donation and transplantation. If they accept, the patient receives a secure text message or phone call to give them time to consider it. Those who want to proceed are matched by GOLD with a suitable buddy for further conversations.

From the programme’s launch in February 2023 until February 2024, 342 eligible Black and mixed Black kidney patients at Guy’s and St Thomas’ were approached to take part in the programme. Some 63 were referred to GOLD and 7 patients have since found a possible donor after conversations with loved ones who made contact with the hospital’s living donor team.

Eric Douglin, 61, is a phone buddy on the scheme and joined after he had his own living kidney transplant from his wife Mandi in 2010.

Eric, an information security manager from Kent, wanted to help raise awareness of the importance of living donation in Black communities. He said: “There are so many myths out there we need to dispel. I can talk about my experience of receiving a donated kidney and that I’m here to tell the story.

Eric, a dad of four and grandfather of nine, added:

If I hadn’t had my kidney donation, I wouldn’t have seen at least seven of my grandchildren, and I wouldn’t have walked my daughter down the aisle to get married.

“I have had four partners in the phone buddy scheme, and we speak weekly or twice-weekly. I had one person who was trying to find a donor and had difficulties. I was there to listen to them. They know someone who has gone through that same journey. I let them know they are not alone.”

Tamara Deacon was on dialysis for over a year and received a kidney transplant in September 2024. The 40-year-old, from Camberwell in south London, has taken part in the phone buddy programme since just before she started on dialysis.

Mum-of-two Tamara said: “The information I have received on the programme has been great. I am not someone who knows the questions to ask, and I initially didn't want to have a living donation, as I didn't want someone to feel they had to do that for me. But through the programme, I learned the benefits of living donation and I am now in a shared scheme.

“The scheme is great. I can ask my GOLD buddy any questions I have at the time I have them, and she has the time to talk me through everything. I can be open, honest and emotional without being judged. I didn’t initially want to talk to anyone about it, but I’m so happy I said yes.”

Tamara is matched with GOLD founder Dela Idowu. Dela said: “We have had lots of positive feedback from patients about the phone buddy scheme. They say it is different talking to someone from their own community. They appreciate the shared cultural identity.

“It will take us years to change the cultural mindsets around organ donation, but we are the living proof that there can be success, and through our experiences we give people that glimmer of hope.”

Dr Sumoyee Basu, a renal registrar, has led the pilot project at Guy’s and St Thomas’. Dr Basu said: “We have one of the most diverse groups of patients with chronic kidney disease in the country, yet Black people are still under-represented in the number of people receiving kidney transplants.

We’re really committed to reducing health inequalities and working with GOLD provides more time for our patients to learn about the benefits of living kidney donation outside a busy clinic appointment.

“Empowering people with tailored information and supporting conversations with friends and family is critical to improving patient health outcomes. We’re really grateful to all the buddies at GOLD for volunteering their time and commitment to help others.”

Visit the Gift of Living Donation website for more information about GOLD.