A recent (Sept. 2023) mixed methods study aimed to understand the lived experience of those living with long COVID. It assessed quality of life and healthcare experiences among 3,762 people with long COVID in the UK. 91% reported worse quality of life after long COVID, especially struggling with fatigue, cognitive dysfunction, mobility limitations and pain. Mental health was also substantially impacted for many.
Most relied on family members for care needs instead of formal healthcare services. Under 20% had accessed specialist clinics, facing long waits for diagnosis. Over half were unable to resume working full-time due to persistent symptoms. Free-text responses highlighted the profound physical, cognitive, emotional and financial toll.
Key themes in respondents’ experiences included loss of independence, inability to perform self-care, lack of medical validation, and dismissive attitudes among employers and clinicians. Many expressed frustration with the lack of research, clinical guidance, rehabilitation services and financial support.
Multidisciplinary care plans were commonly desired but rarely received. Healthcare systems largely failed to meet patients’ needs and expectations. Stigma and discrimination in healthcare and workplace settings exacerbated challenges.
Understanding patients’ experiences and priorities is vital to improving care. This study reveals major gaps, including in access to specialist clinics, multidisciplinary rehabilitation, and workplace accommodations. Quicker diagnosis, treatment and research were urged.
The impacts encompassed all aspects of life, including basic daily functioning, social connections, livelihoods and mental health. Patients felt abandoned and uncared for by the very systems meant to help them. Action to address this neglect is critically needed.
Long COVID’s potential to devastate quality of life and socioeconomic participation makes addressing these gaps an urgent priority. But the study also provides a roadmap for patient-centered solutions if the political will exists. The demands are clear: recognition, rehabilitation and support.
Sufferers’ voices must shape the response. This study demonstrates the power of listening – both for revealing where we have failed patients so far, and how we can finally start serving their needs and priorities moving forward. The call for change resounds; it is time those in power listen and act decisively.
The full results of the study can be accessed here.