HEALTH EQUITY ADVOCATE BLOG POST

Candice McKenzie

Founder and Director and a kidney transplant recipient

African Caribbean Kidney Education Enterprise® (ACKEE)

Candice McKenzie is the founder and director of the award winning African Caribbean Kidney Education Enterprise® (ACKEE) CIC and is a kidney transplant recipient.  She uses her lived experience to raise awareness about kidney health within African Caribbean communities and speaks on living with kidney disease, kidney failure, dialysis, organ donation, transplant and life after transplant.

Why this matters to me?

As a kidney transplant recipient, I have experienced first hand the impact of late diagnosis and health inequalities when it comes to chronic kidney disease.  This lived experience shapes and drives my work, to ensure that others have access to earlier intervention, better information and ultimately better outcomes.

The Equity Issue

Chronic Kidney Disease (CKD) is a largely silent condition that often develops without symptoms until it reaches an advanced stage. This can make early detection difficult, particularly in communities where awareness is low and routine testing is not prioritised.

Chronic Kidney Disease (CKD) affects more than 10% of the UK population and is rapidly becoming more common as the population ages.

People of African Caribbean heritage are five times more likely to develop CKD than other groups due to factors such as hypertension (high blood pressure), heart disease, lupus and diabetes. This inequity is also shaped by access to information, trust in healthcare systems, and how health conversations take place within communities.

As a result, many individuals are navigating serious illness without the knowledge or support needed to intervene earlier.

What’s Driving the Inequity?

The inequity in kidney health outcomes is driven by a combination of structural, cultural and systemic factors.

In healthcare, there is often a reactive approach to kidney disease. Patients are not always referred to specialists until the condition has significantly progressed, which limits opportunities for early intervention.

There are also gaps in how risk is communicated. High blood pressure, one of the leading causes of kidney disease, is often normalised or not taken seriously enough. If left untreated, it can quietly damage the small blood vessels in the kidneys over time, often without any symptoms appearing until significant damage has already been done.

Alongside this, there is a lack of culturally relevant education and open conversation within African Caribbean communities. Health is not always discussed proactively, and where information is available, it is not always delivered in a way that resonates or builds trust.

These factors combined create an environment where kidney disease can develop silently, going undetected and unmanaged, until it reaches a critical stage.

Implications for Health, Research, or Care

The consequences of these inequities are significant. Late diagnosis often means that individuals are entering care at a point where treatment options are more intensive, including dialysis or transplantation.

This has a direct effect on patient outcomes, quality of life, mental wellbeing and long-term health. It also places additional pressure on healthcare systems, as care becomes more complex and costly.

There is also the issue of trust. When communities consistently experience poorer outcomes or delayed care, confidence in healthcare systems can decline. This can reduce engagement with preventative services and early testing, reinforcing the cycle of inequality.

Addressing kidney health inequity is not only a clinical issue; it is also a matter of trust, access and the long-term sustainability of healthcare systems.

What Needs to Change.

A shift is needed from reactive to preventative care. This starts with making early testing a priority, particularly for high-risk groups and those living with conditions such as diabetes, heart disease and lupus, and ensuring people understand the importance of knowing their numbers, including blood pressure and kidney function.

Healthcare systems must also take greater responsibility for early intervention, with clearer pathways for monitoring and referral before the disease reaches an advanced stage.

Within healthcare systems and at community level, there needs to be more culturally relevant education and more open conversations about kidney health. Community-led organisations, such as the African Caribbean Kidney Education Enterprise, play a critical role in bridging the gap between healthcare systems and the communities they serve.

Progress should not only be measured by treatment outcomes, but also by earlier diagnosis, increased awareness and stronger engagement with preventative care.

Question for the Sector

Black patients are five times more likely to develop kidney disease than other groups. Why is early intervention still not prioritised in the same way as treatment?