Only a “fraction” of long-term covid patients are getting the help they need, with a third of them waiting more than three-and-a-half months to be assessed after a GP referral, rising to almost half in some areas.
More than 60,000 people in England had a first evaluation of the post-Covid syndrome in a specialized service of the SNS between July 2021 and August 2022.
But latest estimates published by the Office for National Statistics (ONS) show that around 277,000 long-term Covid sufferers in England report that the disease has “greatly” limited their daily activities. These are the people that experts would expect to be referred for evaluation; however, the numbers that have been seen are much lower.
Dr Helen Salisbury, a GP and BMJ columnist, said: “A fraction of people who have this problem are actually being cared for” within existing services.
She said the reasons could include patients not realizing help is available to them; GPs do not recognize prolonged Covid in those who do not label themselves as carriers of the condition; and lack of knowledge and local access to specialized clinics.
While Salisbury admitted there is no current cure for prolonged covid, he added that patients require treatment that involves symptom management, psychology and knowing they are not alone in their diagnosis, which he said was “very, very important” for patients.
Otherwise, lack of access to specialized care can leave patients “prey to all kinds of snake oil salesmen,” he added.
Ondine Sherwood, co-founder of the defense charity covid long SOS said many people with prolonged covid “are struggling to get medical care. Many are not receiving any treatment at all.”
He said public misconceptions about prolonged Covid made it difficult for patients to ask for and get help. “There was a lack of preparation for possible long-term morbidity that was not passed on to healthcare professionals and this has contributed to the lack of care for prolonged covid.”
NHS England has set up 90 post-Covid services in England to provide diagnosis, treatment and rehabilitation for those with persistent Covid symptoms and no alternative diagnosis for at least 12 weeks.
An average of 4,000 people have attended one of these clinics each month between July 2021 and August 2022 for a first review of symptoms. A third of them had to wait more than 15 weeks before that first review, a Guardian analysis of England’s NHS figures found.
Those in the Southeast are most likely to face the longest waits, with nearly half of them on average monthly waiting that long for an initial screening. That compares with a fifth of those in the East of England and the South West.
The Director General of the World Health Organization (WHO), Tedros Adhanom Ghebreyesus, wrote in The Guardian earlier this month:: “Delayed clinical care in patients with long-term Covid not only impacts their quality of life but also the time they have symptoms.”
He added that “it is very clear” that prolonged covid was “devastating people’s lives and livelihoods” and that governments needed to “invest long-term in their health system and workers and make a plan now to deal with it.” prolonged covid.
“For countries with Covid-specific clinics, waits are often long, so it is important to start integrating multidisciplinary care into health systems, as patients need a variety of services. This includes, but is not limited to, health and care workers with expertise in neurology, rehabilitation, psychology, speech therapy, and respiratory therapy.”
In response to the waits facing patients in England, an NHS spokesman said local healthcare teams were “working hard to continue to reduce waiting times and prioritize the most complex cases”.
“Since the pandemic began, we have invested more than £220 million and opened 90 specialist clinics and 14 centers for children and young people,” they added. People concerned about prolonged Covid symptoms can access these services through their GP or the NHS Your Covid Recovery Website.
The analysis of the NHS data draws similar conclusions to the latest ONS survey on prolonged covid, in that women and people aged 35 to 64 are more likely to have the condition. The rate of female attendance at a first review of the post-Covid syndrome is 77% higher than that of men and those between 35 and 64 years old reported twice the rates as the groups of 25 to 34 and 65 to 74.
A recent study by the WHO and the Institute for Health Metrics and Evaluation concluded that at least 17 million people in 53 countries in Europe had Covid for a long time during 2020 and 2021, and called on governments to find “solutions to this crisis” .
Sherwood said the voices of Covid patients needed to be heard for a long time as part of the upcoming coronavirus investigation.
“It is a pattern that we have seen throughout the pandemic that people with prolonged covid were the poor relation, they were never officially counted, they were never mentioned in government reports. When they sought help, many were told they were imagining it.”