Elham Asaad Buaras
British Muslims face difficulties accessing palliative and end-of-life care, according to a joint report by the Muslim Council of Britain (MCB), end-of-life charity Marie Curie, the University of Leeds, and the University College London.
The report, titled Muslim Voices: The Palliative Care Needs of British Muslims during the COVID-19 Pandemic and Beyond, exposed a “postcode lottery” of care.
The study also concluded that the pandemic made pre-existing health inequalities worse, and disproportionately impacted the health of people from most minority groups.
Famiies surveyed talked of finding it difficult to receive the support and information they required, and not knowing how to help their loved ones’ troubling symptoms.
The report also found that healthcare providers need to do more to raise awareness of what palliative and end-of-life care services are available and what they can achieve for minority groups, including British Muslims.
The report suggests that increased involvement of a diverse range of people in the development of health and social care services is needed to tackle inequity in access to care.
Zara Mohammed, Secretary-General of the MCB, said the report accentuates “the deep-seated nature of health inequalities and their particular prevalence within British Muslim communities.”
Citing Public Health England and ONS data, which revealed minority populations had the highest rate of COVID-19 mortality.
“This period of intensive learning has reaffirmed the systemic nature of inequality,” said Mohammed. The report’s main component was a series of interviews conducted by British Muslims with other people who had first-hand knowledge of the health system during the COVID-19 outbreak.
Palliative care patients needs declined more quickly as a result of the delays in receiving healthcare, seclusion, and restrictions on rituals said families and patients. The shift to online and virtual delivery of care during COVID-19 compounded the challenges, with healthcare providers relying too much on digital solutions that many people struggled to access.
This affected both the physical and mental health of people who felt forgotten by the system. Saad, 56, said his father’s face-to-face consultations were cut off during the lockdown, a problem for an elderly man with dementia unfamiliar with “Zoom calls.”
“He would see the GP, have the GP physically examine him, and then give him medication. And I think when that wasn’t possible, he probably didn’t cope with it right.” With the focus on COVID-19 during the peak of the pandemic, many people with other conditions felt their palliative care needs were neglected.
Reema, a 42-year-old Pakistani-British woman with multiple sclerosis, had to self-manage her pain during the pandemic due to difficulty accessing healthcare services.
“When I was seen, it was [at] an alarming state. I kept getting in touch with my GP, but it wasn’t addressed at the right time. There were people who were unwell, like me, for a long period, and we needed support. We needed those services, but they just completely neglected everything else, and the focus shifted to COVID-19. So that has been very disappointing.”
Patients also felt unsure about how to access information or support for their care needs, and sometimes struggled to be understood.“Muslims told us they felt left behind and didn’t know where to turn for help during the most difficult times of their lives. Our research highlighted the experiences of an already marginalised group within our society.” said Dr Gemma Clarke, a senior research fellow at the University of Leeds.
(Credit: Free public domain CC0 photo. University of Cambridge)
