A new report involving UCL researchers has laid bare difficulties British Muslims face when accessing palliative and end of life care.
The report - a study between the Muslim Council of Britain, end of life charity Marie Curie, the University of Leeds and UCL - reveals a "postcode lottery" of care.
It says the Covid-19 pandemic made pre-existing heath inequalities worse, and disproportionately impacted the health of people from most minoritised groups.
Family members in the study described not knowing how to support their loved ones' distressing symptoms, and struggling to get the information and support they needed. The report also found that health care providers need to do more to raise awareness of what palliative and end of life care services are available and can achieve to minoritised groups, including British Muslims.
The report suggests that greater 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 Muslim Council of Britain, said: "This report highlights the deep-seated nature of health inequalities and their particular prevalence within British Muslim communities.
"Evidence from Public Health England and the Office for National Statistics revealed that during the peak of the pandemic, minoritised groups had the highest rate of Covid-19 deaths.
"The Muslim Council of Britain also listened and paid heed to healthcare workers on the front line who warned of the disproportional impact Covid-19 was having on minoritised communities, long before it was acknowledged in mainstream discourse.
"This period of intensive learning has reaffirmed the systemic nature of inequality."
Key to the report was a series of interviews carried out by members of the British Muslim community with other individuals with lived experience of the health system during the Covid-19 pandemic.
Families and patients described difficulties and delays in accessing healthcare, isolation and restrictions around rituals which negatively impacted their lives and may have sped up the decline of people with palliative care needs.
The shift to online and virtual delivery of care during Covid-19 compounded challenges, with healthcare providers relying too much on digital solutions which many people struggled to access. This affected both the physical and mental health of people who felt forgotten in the system.
Saad, a 56-year-old Pakistani man whose father had dementia, said before the pandemic, his father received face-to-face consultations, but care fell away during lockdown.
"He didn't trust the phone and the Zoom calls, so I think that was a problem for him. He would go to 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," he said.
With the main focus on Covid-19 during the peaks of the pandemic, many people with other conditions felt their palliative care needs were neglected.
Reema, a 42-year-old Pakistani British woman who has multiple sclerosis, said she had to self-manage the pain she was experiencing during the pandemic because of difficulties accessing healthcare services.
