What people have told us about living with long Covid and other post viral illnesses

Healthwatch Suffolk undertook research on people's experiences of living with long COVID and other post-viral illnesses. They received 53 responses from Suffolk residents, including people living with long COVID, ME/chronic fatigue syndrome and other post-viral conditions. Of the respondents, 37 were providing feedback about long COVID only, while others reported post-viral illness or both conditions. 

Many respondents described difficulties obtaining a diagnosis, accessing GP appointments and securing referrals to specialist services. Experiences of the Suffolk and North Essex Long COVID Assessment Service were mixed. Positive feedback highlighted thorough assessments and reliable follow-up, while concerns included long waits for referrals, travel distances, poor communication between services, lack of continuity of care and limited access to specialist support. People with post-viral illnesses also reported challenges accessing services, long waits for assessment and ongoing stigma associated with conditions such as ME/CFS. 

Support from family, friends, workplaces and peer support groups was frequently identified as being more helpful than formal services. Respondents also valued advice from occupational therapists, physiotherapists and specialist clinicians, particularly around pacing activities, managing fatigue and self-care. However, many people reported receiving no support at all and described struggling with exhaustion, reduced quality of life and the mental health impact of living with long-term symptoms. 

Healthwatch Suffolk concluded that people living with long COVID and other post-viral illnesses would benefit from faster access to specialist assessment and treatment, better understanding among healthcare professionals, clearer information and advice, more support groups and improved communication between services. The report highlighted the importance of practical support, occupational therapy, self-management advice and support from family, friends and employers in helping people manage their condition.