Long Covid
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Healthwatch Oxfordshire wanted to hear about people’s experiences of Long COVID and the support they received from health and care services for this condition. They aimed to gather experiences of people across the treatment pathway, from those seeking support in primary care from their GP, in the community, and those requiring support from a Long COVID clinic. 50 people responded to a short survey promoted between February and March 2023.
Long COVID symptoms varied widely, and most respondents reported experiencing more than one symptom. Fatigue/extreme tiredness was the most common impact of Long COVID, making it difficult to do daily activities, and impacting on quality of life, relationships, jobs, finance and caring responsibilities. Long COVID’s impact on mental health was a strong theme.
People seeking diagnosis and support for Long COVID felt that some GPs were initially limited in their knowledge and understanding of the condition. Whilst some patients felt that they were offered limited help, undiagnosed symptoms and little information received, others felt more supported. Being listened to and ‘believed’ was important.
Long COVID clinics have provided a valuable source of support, with multidisciplinary and peer support and shared experience, and common ground having a positive impact on mental health for patients.
People found peer support from other sources including family, friends, online or in-person communities and holistic approaches. They found this was a useful way to get support and an understanding of ways to self manage their condition and symptoms. Some took multiple pathways to various services, and considerable time before finding support or accessing a Long COVID clinic.
Symptoms of Long COVID made it difficult to be proactive to seek help and a pathway to support. 92% of respondents indicated that Long COVID had an impact on their health and fitness. People found that access to physical activities could have a positive effect on their mental health and ability to manage symptoms.
More needs to be done to hear about the experiences and support needs for Long COVID by those from Black and minority ethnic communities, those living in the most deprived areas and people living with who are unable to seek support due to pressures of work, caring or financial pressures.