NHS services for the 2 million Britons struggling with long Covid are “woefully inadequate” given how many people are being diagnosed with the condition, nurses’ leaders have warned.

There are too few specialist clinics to handle the soaring demand for treatment, with only a tiny number of sufferers receiving any help, the Royal College of Nursing (RCN) said.

The Office for National Statistics estimated last week that the number of people in the UK suffering with continuing symptoms of Covid such as fatigue, muscle pain and breathing problems has doubled in a year from 1 million in May 2021 to 2 million last month.

The NHS has responded to the soaring number of long Covid patients by setting up clinics to assess, diagnose and treat them and refer them on to other services, such as cardiology departments for those with heart problems.

But the RCN claimed that “existing services are woefully inadequate to meet the level of demand”. Warning of a “postcode lottery in access to care, it has also voiced concern that “diagnosis and treatment vary hugely across the UK, with long Covid treated as a physical condition in some clinics but predominantly as a psychological condition in others”.

While England already had 89 long Covid clinics by last July, Northern Ireland only has one and Wales and Scotland have still not set up their first ones.

“With over 2 million sufferers there aren’t enough specialist services to meet the growing demand, and the help patients get varies hugely across the country,” said Helen Donovan, the RCN’s professional lead for public health.

“Of the 2 million people self-reporting long Covid, only a fraction are aware of, or accessing, the treatment available. In April only a tiny fraction of sufferers, 4,500, were awaiting an assessment at a long Covid clinic in England.”

Nurses should be much more involved in providing the care to long Covid patients, given their expertise in managing long-term conditions such as cancer and diabetes, Donovan added. Clinics are usually run by respiratory doctors who are helped by physiotherapists and sometimes occupational therapists and psychologists, she said.

Layla Moran, the Liberal Democrat MP who chairs the all-party parliamentary group on coronavirus, said: “Around 2 million people in the UK are living with long Covid and yet the government is still failing to fully grasp the enormity of the challenge this condition presents to people’s livelihoods, the economy and our public services.”

The Guardian has approached the Department of Health and Social Care for a response.

Meanwhile, about half of people with long Covid may be affected by sleep disturbances, data suggests.

Cinthya Pena Orbea, at the Cleveland Clinic in Ohio, US, analysed data from 962 patients attending the centre’s reCOVer Clinic, which provides care for individuals with chronic or new Covid symptoms at least 28 days after diagnosis, between February 2021 and April 2022. Of these individuals, 8% reported severe sleep disturbances while 41% reported moderate sleep disturbances.

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People with higher body mass indexes (BMIs) and anxiety were more likely to be affected, while black patients were three times more likely to experience moderate-to-severe sleep disturbances, even after adjusting for demographics. The findings were presented at the Sleep 2022 meeting in Charlotte, North Carolina.

Separate research published in Brain Science in April found that 51% of those presenting to a long Covid clinic in Texas reported disrupted sleep, and that poor sleep quality was associated with increased depression, anxiety and post-traumatic stress.

Neither study was able to disentangle whether anxiety contributed to people’s sleep problems, or vice versa – or if other symptoms, such as pain, were the source of their sleep problems. “Future work should follow patients to examine if sleep, fatigue and mental health symptoms spontaneously remit with time,” said Sara Nowakowski at Baylor College of Medicine in Houston, who led the Texas-based research.

A Department of Health spokesperson said: “Long Covid is a new challenge for healthcare systems all over the world and the UK is leading the way on research, treatment, and care.”

They added: “We are backing our world-leading scientists with over £50m to better understand the long-term debilitating effects of Covid, and the NHS has committed £224m to support people with ongoing symptoms of Covid, with over 90 specialist clinics across England.”

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