GPs in England may be failing to recognise thousands of cases of long Covid, according to research that raises questions about how the condition is diagnosed, recorded and managed in the NHS.
Researchers at Oxford University analysed the GP records of nearly 58 million people in England from February 2020 to April 2021 and found that only 23,273 had a formal diagnosis of long Covid in their medical notes.
The number is nearly 100 times smaller than the 2 million adults estimated to have had long Covid in a major survey released last week by scientists at Imperial College London. The React-2 survey found that people with long Covid tended to fall into two groups: those with ongoing respiratory problems and those with fatigue-related illness.
Dr Ben Goldacre, who led the latest study at Oxford’s Nuffield department of primary care health sciences, said he was surprised that GPs recorded so few cases compared with the survey results. “It is an extraordinary discrepancy to find between survey data and formal diagnostic records,” he said.
Using a secure computer system called OpenSAFELY, the scientists searched medical records for formal diagnostic codes that GPs are meant to use when noting that a patient has long Covid. They found that more than a quarter (26.7%) of GP practices in England had never used them.
There were marked geographical differences, with GPs in London recording about 56 cases per 100,000 patients, almost three times the 20 per 100,000 patients in the east of England. Nearly twice as many cases were recorded for women than for men.
Whether long Covid appeared on patients’ records also varied depending on the software that GP practices used. Those that recorded patient notes on a system called Emis were more than twice as likely to include a formal code for long Covid as those using an alternative called TPP. “That strongly suggests there’s a very big difference in how those software systems perhaps prompt you to enter a diagnosis of long Covid,” Goldacre said.
The study, published in the British Journal of General Practice, raises particular concerns about the formal long Covid codes drawn up by NHS Digital, which include neither the word “long” nor the word “Covid”.
“If clinical terminologists have a preferred form of words, that’s fine, but they are going to have to invest an enormous amount of time and effort marketing their preferred phrase to users,” Goldacre said.
The researchers stress that there are multiple reasons for GP records containing so few formal diagnoses of long Covid. Patients may not be going to their GPs to describe their ailments, GPs may set a higher bar for diagnosing the condition than patients, and GPs may be failing to record cases properly.
Goldacre said that whatever the cause, the problem has an impact on research and the clinical management of long Covid.
Dr David Strain, clinical lead for Covid services at the Royal Devon and Exeter NHS foundation trust, who was not involved in the study, said finding that only about 1.5% of people who have got or had long Covid were properly coded was a concern.
“Firstly, unless we know how common the disease is, we cannot determine what resources will be required to manage the condition going forwards,” he said. “Secondly, we need a systematic understanding of who gets long Covid, in order to identify at-risk groups. This will be particularly important if there are further waves of vaccine-resistant mutations, given the potential personal and economic impact long Covid is having.
“Finally, and most importantly, it suggests that the disease is being under-recognised, and therefore people suffering with the condition are not getting access to the help that is being made available.”