Health policy is not an area I ever imagined I would work in. Having joined Kidney Research UK initially as a volunteer after many years working in marketing, I wanted a change of career and to be able to “give back” to a community in need. Stumbling upon a discussion around transplantation and kidney disease at the local community centre, I was thrilled at the prospect of using my personal skills to help educate and raise awareness around kidney disease and organ transplantation in an underserved ethnic minority community deep in the heart of the south side of Glasgow. I started off as a grassroots individual reaching out to the masses; seven years later I am now the policy lead in Scotland at Kidney Research UK and also project manage the Scottish Peer Educator Volunteer project. The project aims to educate South Asian (predominately the Sikh, Hindu and Muslim) communities on kidney health, disease and making a choice on organ and tissue donation.
Kidney Research UK is the leading kidney research charity in the UK. Our urgent mission is to end kidney disease. Through funding groundbreaking research, we help kidney patients live a better quality of life and this can only be achieved by funding and support from our many committed supporters. You may have heard kidney disease described as a “silent killer” as it is often symptomless in the early stages. With an estimated 7.2 million people in the UK currently living with chronic kidney disease (CKD), treatments can be gruelling and currently there is no cure. A simple blood test and urine test could detect any abnormalities in the kidneys, but many people are being diagnosed late. In our recent survey 62% of patients were already at or above stage 3 CKD when they were diagnosed.
The charity has been working within the health inequalities spectrum for over a decade. Due to the pandemic health inequalities has now come to the forefront, it is a terminology that is used so widely I believe it has lost its true meaning. Health inequalities are avoidable differences in the status of people’s health. But we use this term to refer to the differences in care that people receive and the opportunities that can lead to healthy lives – both of which can contribute to someone’s health status. How can we change the narrative and make a real difference to community members at grassroot level? In my opinion, only through the support of third sector charities and a collaborative approach can this truly be achieved. To be able to understand the community needs and requirements we need to overcome the hurdles and grasp the opportunities to make real change.
When we consider the statistics of kidney disease, as of 31 March 2023 there were 5,251 adults on the UK kidney transplant list (NHS Blood and Transplant). More than one in ten of people in Scotland are thought to have CKD, around 607,000 people in total. Of those, 45% (around 273,000) are in the more severe stages of the condition. There are currently over 420 patients waiting for a kidney transplant in Scotland (March 2023) and more than 2,000 people in Scotland are reliant on dialysis to stay alive – this could rise to as many as 10,000 people by 2033 as shown in our report Kidney disease: A UK public health emergency – Kidney Research UK). This report is the most comprehensive independent review of the burden of kidney disease in the UK in over a decade. The report found that the economic burden of kidney disease in Scotland, including a severe productivity loss to the economy, was over £566 million, which could rise to more than £1 billion by 2033 if we don’t do more now to prevent the rates of CKD rising. Change needs to happen now!
My passion to make change in kidney health has grown over the years due to having close family and friends affected by this horrible disease but I am also alarmed at the disparities within their healthcare. When I questioned why, in the 21st century, people from the diverse ethnic communities of Scotland are still unaware of the impact of kidney disease and how can they self-manage their health and have better outcomes for themselves and for their families, I came to understand that it is deep rooted within culture, faith and many religious barriers we have to be overcome.
I met with the Minister for Public Health and Women’s Health Ms Jenni Minto recently and she was overcome with awe of how the volunteers from the organ and tissue donation project are so passionate about giving back to the community. She was impressed with how they have contributed to the rise in the number of people in the South Asian communities of Glasgow and Edinburgh joining the organ donor register (ODR). They have attended over 250 events and signed 1,450 people onto the ODR. Four of the peer educators have been awarded honours for their voluntary work. I commend their hard work and passion and believe this is a true example of community members supporting and helping mitigate some of the health inequalities on a taboo subject within the ethnic minority group.
We need a change in mindset in Scotland! As a fourth-generation Scottish Asian resident, I believe race, diversity, culture, faith, gender has no place to be misunderstood. In my opinion, by understanding the needs of the diverse population and conquering the knowledge behind these factors we will truly be able to tackle health inequalities.
Bushra Riaz is Policy lead at Kidney Research UK and a VHS Trustee
