Accessing healthcare for Long COVID in the UK: A secondary analysis of two qualitative data sets

Problem

Access to primary healthcare has undergone significant changes during and since Covid-19, coinciding with the emergence of a new illness, Long COVID. There is a lack of knowledge regarding how these two developments intersect and what implications they have for the healthcare of individuals with Long COVID. Our aim was to explore the healthcare-seeking experiences of people living with Long COVID.

Approach

This work draws on qualitative components of two recent studies. The Long COVID in Scotland study (CISS) recruited Scottish adults who had a positive COVID-19 test and a sub sample of participants (N=45) took part in one or two in-depth interviews (N=63 interviews) exploring the impact of ongoing symptoms on daily life. The ReDIRECT RCT evaluated whether a UK-based, remotely delivered, evidence-based, cost-effective weight management programme improved symptoms of Long COVID in people with overweight/obesity. A process evaluation interviewed participants (N=35) once, twice or three times (N=66 interviews) to explore the experience of the intervention and Long COVID more generally. Both data sets contain accounts of accessing primary care. A total of 129 interviews were

Findings

Participants from both studies reported significant symptom burdens from Long COVID yet contact with primary care was minimal. Accessing appointments proved difficult, sometimes impossible, due to limited availability. Appointments appeared to be reserved for ‘urgent’ issues and people felt they had nowhere to go with chronic symptoms. Face-to-face consultations were rare, with communication mainly via email or phone. Continuity of care was an issue and people expressed frustration with repetitive symptom recounting and over prescribing of antibiotics by GPs. Many avoided seeking help, perceiving little assistance available. Those who did seek help described a disjointed response, feeling dismissed or ‘gaslit’ by GPs, trapped in a cycle of inconclusive tests and consultations. Many felt their GPs were uncertain about how to treat them and there were few services that GPs could refer to. Long COVID clinics offered limited support and GPs appeared hesitant to intervene. Effective treatment remained elusive, compounded by reluctance to consult due to past dismissals and unfruitful investigations.

Consequences

Routes of access to primary care have changed for everyone in recent years, requiring people to be aware of, and adhere to, new requirements for obtaining appointments, such as phoning reception at 8 am. The difficulties in accessing care are exacerbated for those with debilitating symptoms, including fatigue, who are experiencing new and confusing symptoms that often do not meet the criteria for obtaining an appointment. Changes to appointment systems and appointment allocation must consider the capacity of those with this new, chronic condition to engage with these systems. GPs require support to better understand how to support patients living with Long COVID.