What happens inside a long covid clinic?

Inside Berkshire’s long covid assessment clinic

At the Royal Berkshire clinic, Deepak Ravindran, a consultant in anaesthesia, pain, and musculoskeletal medicine, leads a multidisciplinary team that includes GPs, physiotherapists, occupational therapists, and psychologists.

The clinic is in the pain department, a suite of rooms tucked away down long hospital corridors. On a hot June Monday, the clinic’s main day for assessment, staff remain focused as the struggling NHS air conditioning offers little relief.

While the World Health Organization has declared an end to covid-19 as a global health emergency, for the patients waiting here the impact of the virus still looms large. Masks have vanished and antibacterial gel dispensers are neglected in everyday life, yet the team in Reading repeatedly hear from patients whose lives are dominated by the virus.

A mother of two cries as she describes how fatigue stops her doing any more than drive her children to school and cook their evening meal. “I go to bed when my 8 year old does,” says Melissa Hampton from south Oxfordshire, who has had chronic fatigue syndrome for 30 years that worsened significantly after covid-19.

“I’m 47 and I deserve more of a life than this,” she says. “It’s been a very difficult journey. I want to be able to do things with my children that other parents can.”

Ravindran pushes a box of tissues forward as he listens attentively to her symptoms, how they fluctuate and dominate her life. A physiotherapist listens and considers what package of support Hampton may need, while a physiotherapy student takes notes.

The department is quiet. Patients, worn down both by their condition and their journey to get care, speak in low voices.

One patient waiting for her appointment is a translator from Ukraine who has lived in the UK for a decade. The 35 year old mother was fit and active before contracting covid-19 in the autumn of 2021, which left her with breathlessness and fatigue. She is frustrated that it took more than a year to be referred to the service, despite having to cut her work hours back because she was so ill.

“Long covid is pretty miserable,” she says. “It’s affected me financially, emotionally, my self-esteem. I’ve put weight on.”

Another young woman describes how she has been so fatigued she couldn’t get around a supermarket to buy food and regularly feels light headed from low blood pressure. She has had gastrointestinal problems and problems with her memory. After her assessment at the clinic her tone is hopeful. “I feel I’m heading in the right direction,” the 32 year old from Reading says.

The care pathway

It is unusual to have a long covid service in the pain department—Ravindran believes his is the only one, with respiratory or cardiac departments being more frequent locations.

Ravindran came to lead the assessment clinic because of an early interest in long covid and a recognition that many patients with the condition suffer with pain and fatigue. He was aware that there could be some similarities with conditions he already managed, such as chronic fatigue syndrome and fibromyalgia.

“We realised early on that patients are going to have a variety of symptoms that need to be supported in an integrated manner,” he says. “Initially we thought it was going to be patients coming from intensive care, but more than 80% never went to hospital. These are often people who were fit and healthy, who should be working and who often have caring responsibilities.”

Women outnumber men as the clinic’s patients and most referrals are aged between 25 and 64 years, in line with the statistics across the clinics in England, Ravindran says.

The team triages new patients based on a detailed questionnaire, then offers an assessment with the staff thought to be most appropriate—often this is a physiotherapist and one of the doctors. This leads to a 45 minute face-to-face consultation, talking about symptoms and discussing the next steps.

Anthony Collins, a GP with a special interest in long covid, has worked at the clinic since it opened in December 2020. He works there on Mondays, and at a GP practice two days a week. Having time to listen to patients is part of what he likes about working in the clinic. “A lot of our learning has been from the patients and a lot from other team members,” he says. The length of the appointment helps them discuss a patient’s symptoms in detail. “As a GP, having a 45 minute appointment is a real luxury.”

A key part of this assessment is checking and ruling out that other conditions are not the cause of symptoms, Collins says.

If needed, the team can arrange further physical assessments, including blood tests, or fast track referrals for cardiology or respiratory investigations.

While there are no pharmacological treatments recommended specifically for long covid, doctors do prescribe drugs to tackle symptoms. Pain medication, antihistamines, inhalers, and ivabradine—a drug that can manage the heart rates of patients with postural tachycardia syndrome—are among the more frequently used.

Both the team and patients are navigating their way through a long term condition for which answers about cause and treatment remain elusive.

“Initially, patients were coming here hoping that there was a magical quick fix. But in the past year a lot have done their share of reading and research and what they often want is an explanation and an understanding of what their options are,” Ravindran says. “Working with and helping patients with long covid has helped me realise how complex this condition can be.”

After assessment, patients then move on to the rehab section of the pathway, which is based in the community and typically involves six sessions with a physiotherapist.

Harriet Wilkinson, an advanced physiotherapist in the clinic, says these sessions teach patients about the condition and approaches such as pacing, which help them manage their limited energy.

The clinic can also refer to some holistic therapies such as flotation therapy, which has been provided by charitable funding.

The limitations of medicine and importance of “soft skills”

Both the clinic team and patients emphasise the power and value of staff listening and believing the experience of those affected (see box 2). “Many patients talk about a struggle to explain to friends, loved ones, and employers what is going on,” says Wilkinson. “Validating their experience and that long covid is real is important.”

Ravindran concurs, “The biggest impact for patients is how they cannot accept—and not get acceptance from family members—that what should have been a mild to moderate illness has stopped their ability to return to their normal life.”

He understands now, more than ever, the limitations of medicine, and the need for integrated care for complex long term conditions. “It has given me an appreciation of the importance of the simple yet essential skills of listening, validation, compassion, and the power of community,” he says.

Patients may not know other people who have the condition, and can be left feeling isolated by their symptoms, says Hannah Malyon, a long covid physiotherapist who works across the acute and community side of the service. “We see people whose lives have been seriously disrupted by an illness we are still trying to figure out,” she says.

With most conditions, advice usually encourages patients to be as active as possible. “Everyone with long covid has tried that—they have tried to go out there and really push themselves and it’s not worked. If anything, they’ve made themselves worse,” she says. “Here we advise they pace themselves, slow down and pull back.”

For Curran, being listened to by the clinic and accepting her symptoms has been an important part of living with what she now sees as a long term condition. She uses a continuous positive airway pressure machine at night which she thinks has helped alleviate the chronic exhaustion a little, and takes anti-sickness drugs.

“Long covid has changed my life,” she says. “I don’t think I will fully recover.”

Outcomes and the future?

Melissa Heightman, a consultant physician in internal medicine at the University College London Hospitals NHS Foundation Trust post-covid service, says that the most important role has been that provided by therapists, particularly physiotherapists.

Like the model used in Reading, most of the rehabilitation from the UCLH clinic happens within community services.

When it comes to how successful these clinics are at restoring people to their former health, data are still being gathered. It remains a new condition with many mysteries, including the causes and best treatments.

At UCLH, there have been fewer emergency department attendances from people with long covid, and friends and family test feedback has been above 95%, Heightman says.

“Of the 60% of our patients who have continued to fill in outcome measures, a third are getting better, and two thirds still have fluctuating illness,” she says. “It can be hard to discharge people from the service. It’s not a case of being able to fix people.”

Heightman and Ravindran both say those who have had the condition the longest, the “long haulers,” appear to find it hardest to recover.

More than half of the UCLH’s long covid patients were infected in the first two waves, which was roughly the first year of the pandemic. Exactly why this is the case, and the role of the different covid variants and vaccination, is being researched, she says.

“The majority of our patients have been ill for three years,” says Heightman.

Referrals to long covid clinics are now falling across the country, according to NHS England data.8 In April, the most recent month for data, there were 2239 accepted referrals across the country; this compares with 3734 in the same month last year.

Waiting times are also falling: in April 2022, 30% of patients were waiting more than 15 weeks for their first appointment, which has dropped to 13% in the same month this year.

At the Royal Berkshire, there were around 120 referrals a month, now it is about 55, and waiting times have fallen to 12 weeks from 26 weeks at their peak. At ULCH, waiting times are dropping as capacity has increased and referrals stabilised, says Heightman.

Long Covid SOS, a support group for those affected, says there are a range of approaches for long covid assessment and support around the country, and not all patients report a positive experience.

There is a lack of data on recovery from long covid, says charity co-founder Ondine Sherwood. “While there are centres of excellence, there is no doubt that there are clinics where the provision of care is suboptimal,” she says. “It’s really mixed.”

NHS England says the most recent friends and family test data shows that 97% had an overall positive experience of the service.9

Heightman says there are clear positives to draw from the rapid development of the management of long covid that could benefit those with other conditions. Bringing in the expertise of different specialties without needing to refer patients to different departments has been one such innovation at UCLH, she says.

Rehabilitation and self-management, including through the Living With covid recovery app (https://livingwith.health/covid-recovery) and the NHS Your Covid Recovery website (www.yourcovidrecovery.nhs.uk), has also been vital.

How the condition should be managed in the long term is not clear and next spring the funding and oversight for post-covid services moves to local integrated care boards.

“Given this is a long lasting condition, we need to establish future models of care to build on initial treatment and self-management support,” Heightman says. “It’s important that services continue after that time as people continue to develop long covid and there are thousands of individuals undergoing follow-up. We can learn a lot from what has been done so far.”