Just a “fraction” of long Covid sufferers 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 assessment for post-Covid syndrome in an NHS specialist service between July 2021 and August 2022.
But the latest estimates released by the Office for National Statistics (ONS) show that about 277,000 long Covid sufferers in England report that the disease has limited their day-to-day activities “a lot”. These are the people that experts would expect to be referred for an assessment; however, the numbers who have been seen are far lower.
Dr Helen Salisbury, a GP and columnist for the BMJ, said: “A fraction of the people who have got this problem are actually being seen” within the existing services.
She said reasons could include patients not realising that the help is available to them; GPs not recognising long Covid in those who do not self-label as having the condition; and a lack of knowledge of, and local access to, specialised clinics.
While Salisbury conceded that there was no current cure for long Covid, she added that patients require treatment that involves symptom management, psychology and knowing they are not alone in their diagnosis, which she said was “really, really important” for sufferers.
Otherwise the lack of access to specialist care may leave patients “prey to all sorts of snake-oil salesmen”, she added.
Ondine Sherwood, a co-founder of the advocacy charity Long Covid SOS, said many people with long Covid “are struggling to get any healthcare. Many are not getting any treatment at all.”
She said public misconceptions around long Covid made it harder for sufferers to ask for and get help. “There was a lack of preparedness for the potential long-term morbidity which was not conveyed to healthcare professionals and this has contributed to the lack of care for long Covid.”
NHS England has established 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 the symptoms. A third of them had to wait more than 15 weeks before that first review, Guardian analysis of NHS England figures found.
Those in the south-east are more likely to face the longest waits, as a monthly average of almost half of them wait that long to have an initial assessment. That compares with a fifth of those in the east of England and the south-west.
The World Health Organization (WHO) director general, Tedros Adhanom Ghebreyesus, wrote in the Guardian earlier this month: “Delayed clinical care in patients with long Covid not only impacts their quality of life but the length of time they have symptoms.”
He added that “it’s very clear” that long 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 for dealing with long Covid.
“For countries with Covid-specific clinics, waits are often lengthy so it’s important to start integrating multi-disciplinary care into health systems as patients need a range of services. This includes, but is not limited to, health and care workers with expertise in neurology, rehabilitation, psychology, speech therapy and respiratory therapy.”
Responding to the waits faced by patients in England, a NHS spokesperson said local healthcare teams were “working hard to continue to reduce waiting times, and prioritise the most complex cases”.
“Since the pandemic began, we have invested over £220m and opened 90 specialist clinics and 14 hubs for children and young people,” they added. People concerned with long Covid symptoms can access these services via their GP or the NHS Your Covid Recovery website.
Analysis of NHS data draws similar conclusions to the latest ONS survey on long Covid, with women and those aged 35 to 64 are more likely to suffer from the condition. The female attendance rate for a first review of post-Covid syndrome is 77% higher than men and those aged 35 to 64 reported twice the rates of the 25 to 34 and 65 to 74 groups.
A recent study by the WHO and the Institute for Health Metrics and Evaluation concluded that at least 17 million people across 53 countries in Europe had long Covid during 2020 and 2021, and it called for governments to find “solutions to this crisis”.
Sherwood said long Covid sufferers’ voices needed to be heard as part of the forthcoming coronavirus inquiry.
“It’s a pattern we’ve seen all the way through the pandemic that people with long Covid were the poor relation, were never counted officially, were never mentioned in the government briefings. When they sought help many were told they were imagining it.”