Mum died after ten years waiting for a kidney transplant
Annsa Chaudhry was just 50 years old when she died from kidney failure in 2001. Eleven years earlier, she was diagnosed with kidney disease, and needed dialysis treatment for the remainder of her life. Annsa spent ten years on the NHS transplant waiting list, but never received the call that could have kept her alive.
Being South Asian meant Annsa was always disadvantaged in finding a donor compared to white people living in the UK. Nearly 25 years after her death, there is still a shortage of Black and South Asian people on the NHS organ donation register, meaning people from these backgrounds wait longer on average to find a match for a kidney transplant. This is highlighted in our 2024 health inequalities report.
Determined to raise awareness
Annsa’s daughter, Aisha Chaudhry, 48, is more determined than ever to raise awareness of her mum’s story and encourage more people in South Asian communities to sign up to the organ donation register.
Aisha says: “Life could have been very different for my family if my mum had received a kidney transplant. It would have given her far more freedom to live her life compared to dialysis, and maybe she would still be here today. She was treated fantastically by the NHS, and I will be forever grateful for the care she received from nurses and doctors, but it’s heartbreaking she never got her transplant.
“After all these years, too little has changed, and many people in South Asian communities still feel uneasy about the idea of organ donation. This is for many reasons, including religion, culture, and not trusting healthcare professionals because of past scandals. I believe people are open to change, and I’m determined to drive conversations to address the barriers and increase the number of organ donors.”
South Asian kidney donation
Aisha has taken several steps to share her message, speaking at events, appearing in media, and writing a book called ‘Family Matters’.
Aisha says: “Speaking from a non-clinical perspective helps people relate to my story and think about the immeasurable impact of organ donation.
"Families are strong units in South Asian culture and if you want people to act, it needs to come from senior family members – the aunties and uncles. I hope my story starts conversations around the dinner table.
“Many people feel uncomfortable discussing death and organ donation, and don’t want to upset their families. However, this means aunties and uncles are often unaware of their relatives' wishes to be organ donors and may make different decisions upon their death. Even if families are told a relative is on the organ donation register, they don’t always believe that it’s true because of the lack of trust with healthcare services.
“Language can also prove to be a barrier for some in South Asian communities for whom English is not their native dialect. Speaking or reading about sensitive topics like organ donation can prove difficult. That’s why I plan to translate my book to other languages like Arabic, Urdu, and Punjabi.
“Within my religion, Islam, there are also misconceptions which prevent organ donation. I believe if people put themselves in the shoes of somebody waiting for a transplant, or their family, that would help provide a different perspective.
“Everyone is supposed to be charitable within Islam, which means it’s easy for people to donate money, clothes, or food. You can extend that further to donating an organ and helping someone live on.”
Saving lives
Aisha has already received positive feedback from people in South Asian communities, including her uncle.
Aisha says: “My uncle, in his seventies, read my book, and told his family he’d signed up to the organ donation register which was amazing. My aim is to save the lives of people like my mum, and if just a handful of people donate organs because I’ve made them think about it, I’ll be elated.
“When I look at the amazing work with modern technology and medical research, I hope that it’s equal for everyone. I hope everyone who needs support with their health has the same access to it. That will only work if people from all backgrounds come forward as organ donors and make their wishes clear to their families.”
Visit our webpage about kidney transplantation for more information.
Have you been diagnosed with kidney disease?
Request your free Kidney Kit today.
You'll find tips and support from kidney patients, delicious recipes, simple exercise plans and more.