Sickle cell disease, an inherited genetic mutation, holds a significant place in the health narrative of Black communities. Its genetic footprint is deeply intertwined with people of African ancestry, influencing not only the prevalence of the condition but also the unique challenges faced by those living with it. This blog piece will delve into some of the challenges people with sickle cell face when accessing healthcare.
Understanding the Prevalence
Globally, sickle cell disease stands as the world's most prevalent genetic blood disorder, casting a profound shadow in England, where it affects 1 in every 2,000 live births, and affects 15,000 individuals living with the condition (1,2).While this genetic anomaly is not exclusive to Black individuals, it is undeniably more common within this community. This concentration is largely attributed to its historical origins in malaria-endemic regions, where a genetic mutation providing resistance against severe malaria contributed to its propagation over generations (2). The prevalence in Black populations is further shaped by complex dynamics, including heterozygote advantage, intricate inheritance patterns, and historical migration routes, particularly among African Americans and Afro-Caribbean communities (2,3).
Healthcare Disparities for Individuals with Sickle Cell Disease
The path for Black individuals living with sickle cell disease is fraught with intricacies and disparities within the healthcare system (4). They frequently encounter delayed diagnoses, inadequate pain management, and limited access to specialised care (4,5). These challenges are exacerbated by some healthcare providers who may grapple with fully comprehending the nuances of the disease and the unique needs of Black patients (4,5).
In 2019, a global survey conducted by Novartis brought this issue to the forefront. Shockingly, nearly a quarter of painful sickle cell crises were managed at home, with 39% choosing to avoid hospitals due to previous negative experiences (6). Common reasons for this avoidance included a lack of understanding among healthcare providers (26%) and the intensity of pain (19%) (6).
Unfortunately, stigma and misconceptions about sickle cell disease persist within the UK. The "No One's Listening", a All Party Parliamentary Group (APPG) inquiry report in 2021 revealed inadequate care within the UK's general hospital wards and emergency departments (4). Healthcare professionals were believed to often lack awareness, training, and positive attitudes toward sickle cell patients (4). Investment in care was insufficient, and communication among professionals faltered (4).
Furthermore, racism was thought to compound these issues, with patients unfairly labelled as 'drug-seekers,' leading to dismissive attitudes and a lack of empathy (4).Disparities in care and geographical variations were also evident, particularly between specialist departments and general wards (4).
The Call for Change
In 2022, a national audit further exposed the alarming variations in pain management for sickle cell disease across England (5).Despite recommendations from the APPG, subsequent research by Public Digital in 2023, commissioned by the National Race and Health Observatory, continued to reveal unmet needs during acute crises, inconsistent care plans, and a reliance on family members for medication management (5). Hence, individuals in crisis were described to often be hesitant to seek help, citing a lack of trust in the care they would receive due to deficient knowledge and delayed access to pain relief (5).The lack of communication and collaboration among some healthcare professionals in hospitals perpetuated these challenges (5). However, direct access to specialist sickle cell nurses or teams was identified as a significant improvement (5).
The Emotional Burden
However, this battle extends beyond physical health. Living with a chronic illness like sickle cell disease exacts a profound emotional toll, leaving a lasting impact on mental well-being on individuals and families. This psychosocial aspect is intricately intertwined with cultural factors, including the prevailing perceptions of illness and healthcare within the black community, presenting a multifaceted challenge. The Sickle Cell World Assessment Survey (SWAY) in 2023 revealed that 41% of respondents experienced significant impacts on family life. Additionally, 44% reported feelings of anxiety, and a disheartening 45% grappled with depression, underscoring the emotional burden (6).
The Path Forward
In the face of these challenges, a resounding call for advocacy and research specific to sickle cell disease within the Black community emerges. Charities such as the Sickle Cell Society continue to advocate, support, and represent people affected by sickle cell disease (4). NHS England recently launched the campaign "Can you tell it's sickle cell?" to raise awareness in emergency care of the signs of a sickle cell crisis as part of a broader effort to improve care for patients with sickle cell disease across the UK (8).In addition to this, NHS England is also investing in a new blood group genotyping program, in partnership with NHS Blood and Transplant, aimed at improving the transfusion process for patients with inherited anemias like sickle cell disease and thalassemia (9).
This blog post has aimed to shine a spotlight on the profound impact of sickle cell disease within the Black community in the UK and the significant challenges that persist in ensuring consistent, high-quality care, highlighting disparities in healthcare access that demand our attention.
It is clear that individuals living with sickle cell disease bear a substantial emotional and physical burden. However, in the face of these challenges, there is a call to action for advocacy, awareness, and dedicated research to tackle this pressing issue. Organisations such as Sickle Cell Society, along with NHS England initiatives, are making efforts to raise awareness, improve care, and provide essential support to those affected.
As we look to the future, we hope that continued efforts, increased understanding, and unwavering support will lead to a more equitable healthcare landscape for individuals living with sickle cell disease in the UK, ultimately enhancing their quality of life and well-being.
Written by Dr Oby Otu Enwo
(Public Health Academic Clinical Fellow in East of England)
Lugthart, S., Kotsiopoulou, S., Lumani, A., Eleftheriou, P., Drasar, E., Brown, R., Webster, A., Chakravorty, S., Stuart-Smith, S., Velangi M., Atoyebi, W., Howard, J., and Telfar P. Acute and chronic pain management in sickle cell disease: Outcomes of an Englis national audit. Hemasphere. 2022
Hemasphere 2022. Black sickle cell patients’ lives matter: healthcare, long-term shielding and psychological distress during a racialised pandemic in England – a mixed-methods study