People belonging to ethnic minorities are lacking access to epilepsy care, according to a new study from Manchester, published in Seizure journal.
The researchers studied 1,609 adults attending Manchester Centre for Clinical Neurosciences between 2020 and 2024.
They found that people from Asian, Black and Mixed backgrounds were underrepresented in the clinic compared to census data.
Asian people make up 13.6% of the demographic of Greater Manchester but only made up 6.4% of the demographic of the adults attending the clinic.
Similarly, Black and Mixed-race people make up 4% and 3% of the Greater Manchester population respectively, but only 1.4% and 1.7% of the patients attending the clinic.
Researchers Natasha Carmichael and the team concluded that disparities in access to treatment was a predominant issue, as people from ethnic minorities had similar outcomes to the White population once they were receiving specialist care.
Access to care
Ms Carmichael explained that cultural, practical and system-level issues could be barriers to access to care for these communities. She said: “Although our study didn’t look directly at why some people have more difficulty accessing care than others, previous research suggests there are several likely reasons.
“Cultural barriers may play an important role. Previous studies suggest that perceptions of epilepsy, stigma, and differing health beliefs within some ethnic minority communities can influence help-seeking behaviours and engagement with healthcare services.
“Practical barriers are likely to contribute to inequities in access. These include language barriers, employment constraints, transport difficulties, and other logistical challenges associated with attending appointments, which may disproportionately affect underrepresented ethnic minority groups.
“In our dataset, most people from ethnic minority backgrounds lived in the most deprived areas. Previous research shows that people living in deprivation often face greater challenges with work and transport, such as unsociable working hours or reliance on unreliable public transport, which can make attending healthcare appointments more difficult.
“System-level issues within the healthcare system may also play a part. This includes how people are referred between services, unconscious bias, and differences in how well healthcare providers engage with and reach out to local communities.
“In the US referral rates differ for epilepsy based on ethnicity, it’s unclear whether the same applies here but the possibility cannot be ignored. All of these factors can affect who ultimately gets access to specialist epilepsy services.”
The role of socioeconomic deprivation
While the team couldn’t say why this was the case, Ms Carmichael explained that the research found that “the majority of patients attending the epilepsy clinic came from the most deprived areas, highlighting that epilepsy disproportionately affects socioeconomically deprived populations.
“We also observed that most patients from ethnic minority backgrounds in our study lived in more deprived areas, indicating that deprivation and ethnicity were closely linked within our cohort.
“However, the number of individuals from ethnic minority groups was too small to robustly assess whether deprivation contributed to their underrepresentation or modified outcomes differently within these groups.”
Previous research has also confirmed that socioeconomic deprivation is linked to incidence of epilepsy. A study by Dr Kathryn Bush in 2024 found that there was greater risk of epilepsy incidence in high- and medium-deprivation groups, compared to low.
Ms Carmichael and the team also proposed a pathway to help reduce this inequality in epilepsy service access among ethnic minorities. She said: “At community level, targeted campaigns to destigmatise epilepsy and provide culturally tailored information are crucial.
“Healthcare professionals across all stages of the care pathway – from GPs to hospital-based clinicians – should receive appropriate cultural awareness training. Improved cultural awareness can help clinicians sensitively understand patients’ beliefs and concerns, tailor explanations and provide reassurance that supports engagement with care.
“Longer-term efforts to close this gap will require targeted support for people living in socioeconomically deprived communities.”
She added that more clinics outside of big cities could reduce long-distance travel, which could be a barrier for people. Work and social pressures could also be a factor.
She concluded that addressing these challenges is “essential for achieving equitable access to epilepsy care in the long term”.
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