National Organ Donation Week 2022

Charity funded research hopes to break down barriers for National Organ Donation Week

A ground-breaking research study to reduce health inequalities around live organ donation has launched in Leeds for National Organ Donation Week [26 September -2 October 2022].

The study aims to identify barriers to living donor kidney transplantation for people from black, minority and ethnic (BAME) backgrounds. It will also explore underserved groups from lower socio-economic backgrounds.

The study has been made possible thanks to funding from Leeds Hospitals Charity who have provided almost £50,000 to fund a research fellow, Dr Ahmed, who will lead the project.

There are not enough donors of living organs from BAME backgrounds to meet demand.

Currently, 455 people are waiting for a kidney transplant at Leeds Teaching Hospitals NHS Trust. Min Minhaj, 48, from Calverley in Leeds has been on the transplant waiting list for over three years.

Living donor kidney transplantation (LDKT) is the most effective way to help patients with kidney disease get back to normal life. Kidneys from a living donor can last up to 20 years, compared to just 10 to 12 years from a deceased donor.

Just 14% of living donor kidneys in Leeds come from ethnic minorities.

Min Minhaj said: “I lost all my freedom after I was diagnosed with kidney disease. My life has turned into one endless hospital appointment. As well as all the check-ups, I need dialysis every second day, for four hours each time. Outside the hospital, my life is strictly controlled. I can’t travel far because I need to be on hand for dialysis, and everything I eat and drink is monitored. I can’t even have a cup of coffee anymore. I am scared that my dialysis might stop working, or my health will deteriorate, so I might not even be able to have a transplant when a match is found.”

Organ Donation Patient Min Minhaj.

Dr Sunil Daga, Consultant Nephrologist and Clinical Academic at Leeds Teaching Hospitals NHS Trust, will lead the new research to explore barriers and needs for decision making around living kidney donation in underserved groups.

Dr Daga said: “The initial review I undertook in February 2021 found that there were several barriers to living kidney transplantation from BAME communities. We saw that there was a lack of relevant knowledge, fears about the risks of transplantation for the donor, as well as religious, cultural and financial concerns. This made me realise we need to do more to raise awareness and tailor resources and support we offer to patients and their families to reassure them that a living kidney transplant would give the best quality of life.”

Organ Donation Patient Min Minhaj undergoing dialysis

The research will involve speaking to staff and patients at Leeds and Bradford renal units. The interview studies will include recipients of kidneys from living and deceased donors, and patients who are currently on the transplant waiting list, focusing on individuals from South Asian backgrounds, non-English language speakers, and lower socioeconomic backgrounds.

Through this study, Dr Ahmed and his team hope to develop comprehensive patient decision support tools, providing a wide range of resources, including information about the options for transplantation and possible outcomes.

It is hoped that the project will help reduce the health inequalities in access to living donor kidney transplantation for people from underserved groups.

The Leeds Hospital Charity has provided £233,240.96 to fund transplant projects at NHS Leeds Teaching Hospitals in 2022.

For more information and to arrange an interview, please contact Clair Challenor-Chadwick, clair@causeuk.com, 0753 194 8014

Photo of Dr Daga (L – with glasses) & Dr Ahmed (R) featured.

About Leeds Hospitals Charity 

About Leeds Hospitals Charity Leeds Hospitals Charity is the charity partner of Leeds Teaching Hospitals NHS Trust, one of the biggest healthcare trusts in Europe.

We raise funds for projects, above and beyond what the NHS can provide, to support the latest in healthcare innovation and technology, the treatment of rare conditions and to help reduce health inequalities.

Working with local communities, schools and businesses across the city and beyond, we provide £6 million in additional funding for Leeds Teaching Hospitals NHS Trust every year, supporting one million patients and their families and 22,000 NHS staff.

Leeds Hospitals Charity is a registered charity in England and Wales (1170369) and is an accredited member of the Association of Medical Research Charities (AMRC).

About Leeds Teaching Hospitals NHS Trust

Leeds Teaching Hospitals is one the largest and busiest acute hospital trusts in Europe. Every year Leeds Teaching Hospitals provides healthcare and specialist services for people from the city of Leeds, Yorkshire and the Humber and beyond.  We play an important role in the training and education of medical, nursing and dental students, and are a centre of world-class research and pioneering new treatments.

Leeds Teaching Hospitals has a budget of £1.4 billion and employs around 22,000 people. Last year (2019/2020), the Trust provided over 1,645,000 treatments and episodes of care.

Our care and clinical expertise is delivered from seven hospitals on five sites, and they are all joined by our vision to be the best for specialist and integrated care.

Our staff helped to define the values and behaviours that we should work to, and this has become known as The Leeds Way. This forms the foundation of our culture, our ethos and how we work every day.