Patients with long Covid have to wait months for treatment at specialist NHS clinics.
According to the data, only 5,000 people are referred to specialist clinics each month, with a third of them having to wait at least 15 weeks for their first appointment.
Despite the fact that over a million people have the condition, only 5,000 people are referred to specialist long Covid clinics each month – and a third of those have to wait at least 15 weeks for their first appointment, according to NHS figures.
Over the last year, the NHS in England has opened dozens of specialist long Covid clinics to assess and diagnose people who visit their GPs with symptoms of the disease.
According to the Office for National Statistics, 1.2 million people in the UK – about a million in England – have long Covid, which means they’ve had symptoms for at least 12 weeks.
However, from July to September this year, the first period for which data is available, only 4,846 to 5,182 patients were referred to clinics per month.
According to the data, 33% of patients who are referred must wait at least 15 weeks for their first assessment, with another 15% waiting 10 to 14 weeks.
The NHS figures, which tally with anecdotal evidence and her foundation’s own research, worry Sarah Woolnough, chief executive of Asthma UK and the British Lung Foundation.
“We’ve heard firsthand from thousands of people who have had their lives turned upside down by long Covid, who have had to quit their jobs and most-loved hobbies as they battle wide-ranging and disabling symptoms like persistent breathlessness,” she said.
“As if that wasn’t difficult enough, many people are then left to deal with the debilitating effects of long Covid on their own due to a lack of support and long wait times for specialist care,” she added.
“The government must train and recruit more specialist NHS staff so that people with long Covid can receive the specialized care they require.”
“In the meantime, healthcare professionals must ensure that they are listening to people with long Covid and assisting them in obtaining the services they require, wherever possible.”
In England, there are 90 long Covid clinics known as “assessment services.”
These clinics assess and diagnose people who are suffering from Covid-19’s long-term health effects and, if necessary, refer them to existing treatment and rehabilitation services.
Long Covid clinics are being introduced in Northern Ireland.
There are no such clinics in Wales or Scotland.
While the long Covid clinic data is limited to England, Ms Woolnough claims that the “problem of getting assessment and treatment” is a UK-wide issue.
Patients are also waiting a long time for treatment, according to a survey conducted by LongCovid.org, a support group for people with the disease.
“There are clearly vast, vast numbers of people who are not getting help,” said Claire Hastie, founder of Long Covid Support and a person with the condition herself.
“It wasn’t unusual to have a wait of five or six months when we looked at this in August, but I’ve also heard of 10 or 11 months – while some people who first became ill in March 2020 are still waiting for appointments.”
“And that’s just for your first consultation.”
Then there’s a three- to six-month wait between your first and follow-up appointment.
I don’t want to come across as critical because everyone has worked extremely hard to achieve this – but there is a skills shortage.”
Representatives from the health-care system expressed sympathy for patients with long Covid, but noted that not all of the 1.2 million people who have the condition need to go to a clinic.
“It is important to note that not every patient with prolonged Covid symptoms requires referral to a specialist service,” said Dr Gail Allsopp, who is in charge of long Covid at the Royal College of General Practitioners (RCGP).
“Many people with post-covid syndrome are cared for by their primary care team in the community, accessing investigations, treatment, and rehabilitation – so the numbers referred onward do not reflect the full impact of those requiring NHS support.”
“The long-term health effects that some COVID-19 patients experience can have a devastating impact on their lives, and as GPs, we want to do everything we can to help them,” she said.
The Royal College of General Practitioners is calling for more investment in community diagnostic and treatment services, including better access to diagnostic tools in the community so that GPs can rule out other serious conditions and ensure patients get a timely diagnosis of ‘long Covid’ – as well as more investment in community rehabilitation services so that treatment can be delivered close to patients’ homes.
“Many people with Covid-19 feel better quickly, with most making a full recovery within 12 weeks,” an NHS spokesperson said.
However, for those with persistent symptoms, the NHS is taking concrete steps to assist them, including the establishment of 90 specialist clinics across the country, with the majority of patients receiving their first assessment within ten weeks.”
“Anyone concerned about long-term symptoms should seek medical attention or consult the NHS’s ‘Your Covid Recovery’ website for more information.”
While a third of people visiting long Covid clinics for the first time in September had waited at least 15 weeks after being referred by their GP, waiting times varied significantly across the country, with a north-south divide emerging.
Nearly half of those in the South West (49.4%), compared to 46% in the South East and 40% in London, had been waiting for more than 15 weeks.
According to NHS figures, only 28% of people in the North East, Yorkshire, and the North West had waited that long, while the east of England and the Midlands had waited even longer, at 26% and 25%, respectively.
Garry Loftus is a 51-year-old hospital porter and army veteran.
His story exemplifies the negative experiences that people can have when seeking help.
Garry, a father of four, is still suffering from symptoms such as breathlessness and chronic fatigue 10 months after battling Covid-19.
He has been unable to return to work and is concerned about the impact this ordeal is having on his children, who are accustomed to living with an active, healthy father who walks an average of 10 to 15 miles per day and now struggles with the 600-meter school run.
“This is the most challenging thing I’ve ever personally faced,” Garry says, despite his two decades in the military.
Garry was initially hopeful after being referred to a long Covid clinic, but after joining a seven-month waiting list, he now feels he’s in limbo as he awaits upcoming tests and test results, including for organ damage and respiratory function.
“It’s so frustrating to be stuck in this endless waiting game.”
I never expected to be referred to a clinic, given a tablet to take, and then be fine again.
However, the word ‘clinic’ implies some kind of treatment or at the very least a face-to-face appointment; all I got was a phone call and then was directed to other services.
“In the meantime, I’ve been piecing together my treatment plan, for example, by doing simple brain-training exercises like thinking of three fruits in the morning and trying to remember what they are later in the day, and by pacing my physical activity as best I can.”
I believe that self-management is an important part of recovery, but I believe it is unjust that I am required to be so proactive in all of this, with virtually no help from healthcare professionals, when I am so sick and helpless.”
Samantha Rodriguez, 55, from Barnet, has had a different story.
Samantha was working as a nursery schoolteacher when she caught Covid in March 2020.
After the acute phase of her illness passed, she began to experience a variety of symptoms, including persistent breathlessness, profound exhaustion, muscle and joint aches, fizzing sensations in the body, numbness in the feet and an abnormal sensation when walking, irregular heart rate, and palpitations, about six weeks later.
Samantha has visited several Covid clinics in north and central London.
“Long Covid has changed my life; it’s cut my career short because I had to leave a job that I loved and had been doing for seven years,” she explained.
But I consider myself fortunate in that I’ve had a more positive experience seeking help and support than many others.
“When I spoke with my GP about long Covid, he seemed knowledgeable and referred me to my local post-Covid clinic.”
The initial referral took a few months to arrive, but after that, I was in regular contact with the clinic’s physiotherapists, both in person and over the phone.
“The physiotherapists at the first clinic were extremely supportive and compassionate, and I felt extremely well cared for.
We worked on breathing exercises and a plan to gradually increase my physical activity.
These have helped me gradually raise my levels to the point where I can now manage household duties and a daily 20-minute walk, which is significantly more than I could before I was referred.
“I’ve had a number of tests, including a heart rate monitor, blood pressure, blood tests, chest X-rays, doppler scan, neurology, and I’m awaiting a nerve conduction study,” says the patient.
Patients with long Covid must wait months for treatment at specialized NHS clinics.
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People with long Covid facing months-long wait for treatment at specialist NHS clinics