The number of people seeking help for long COVID has doubled and the NHS is struggling to keep up, a charity has warned.
Asthma and Lung UK said that over the last six months about half a million had visited its long covid advice pages or called its helpline – and some are at “crisis point”.
There was a near-doubling between September and March this year as the Omicron variant surged in the UK, the charity said.
An estimated 1.8 million people (2.8% of UK population) had long COVID as of 3 April – the most current data available from the Office for National Statistics.
Of this self-reported number, 382,000 had or suspected they had coronavirus less than 12 weeks before; 1.3 million more than 12 weeks ago; 791,000 at least a year previously; and 235,000 more than two years ago.
Fatigue is the symptom most commonly reported (51%), then shortness of breath (33%), loss of smell (26%), and problems concentrating (23%).
Two-thirds (1.2 million people) say the condition stops them doing some or all of their regular activities.
Some patients have asked for advice on buying their own oxygen to help breathlessness, according to the charity – a risk if not issued on prescription and properly monitored.
Others are said to be asking about accessing private care because they’re struggling to get NHS help.
Thirty percent of people at long COVID clinics in England waited more than 15 weeks to be seen as of March/April, according to NHS data.
The overall number still waiting for an initial consultation is not published.
Yvonne Alder, 60, caught coronavirus during the first wave and has experienced extreme long COVID symptoms.
She said she’s been unable to sleep through the night, walk unaided and has developed problems including Type 2 diabetes, bronchiectasis and recurring shingles.
Ms Alder is now unable to work and has had a stairlift fitted and uses an oxygen machine.
On one occasion, paramedics were called to her house when she collapsed after going to the bathroom.
She said she heard nothing for almost a year after being referred to a long COVID centre, and only got in after writing to her MP.
Ms Alder said she’s been seen once and is waiting to hear back about treatment options.
“The lack of support has been horrible,” she said.
“If I had the strength to protest on the streets, I would do it. What about those that are getting COVID-19 today? A tsunami of long COVID sufferers are coming but there’s been nothing done to help the first wave.
“There needs to be more support. It’s a hidden disability. Take it from me – it’s life-destroying.”
Asthma and Lung UK chief executive Sarah Woolnough said cases continue to rise and the problem “is not going to go away”.
She said there is “still a dismal lack of treatments for this disabling condition, which is leaving people fighting for breath and devastating every aspect of their life, health, work and relationships”.
“Coupled with a lack of support and long wait times for specialist care, millions of thousands of people are turning to charities like Asthma and Lung UK, desperate for vital advice and support,” she added.
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The charity is urging the government to invest more in research into treatments and provide more staff at long COVID clinics.
A NHS spokesperson said it had invested over £220m and opened 90 specialist clinics and 14 hubs for children and young people with long COVID.
They added: “We urge anyone who is concerned about long lasting symptoms after having coronavirus to get in touch with their GP practice or visit the NHS ‘Your COVID Recovery’ website for further advice on the support available.”