Post-covid syndrome

Exactly a year ago, as the NHS faced the Covid-19 pandemic we were thinking about what it would mean for rehabilitation

Post-Covid syndrome
Post-Covid syndrome

Although it hadn’t yet been named, they soon concluded that there would be a ‘long Covid’ – and that physiotherapists would have a vital role to play. 

‘In March, April 2020 time when it began to become apparent that this was going to be serious, we looked at what had happened in previous coronavirus outbreaks, at SARS in 2002, and then at MERS in 2012,’ says Jeremy Gee, a community advanced practitioner and physiotherapist with Airedale NHS Trust.

‘A lot of their rehab needs were going on for one to two years – not for just a few weeks after the infection. So we identified quite early there was going to be a long-term need, a rehab need going forward. We formed a multidisciplinary (MDT) team within the service in Airedale Hospital, and I think Leeds did something similar at the same time. We went down the approach of getting as many health professionals from different areas involved, looking at the intensive care side, the nutritional side – looking at all the different aspects – and we identified that what we needed was more of a system-approach, rather than a single respiratory or neurological management approach.’

These early steps towards preparing for what is now commonly known as long Covid or increasingly, in clinical settings, called post-Covid syndrome, look rather prescient now. According to the World Health Organization, around one in 10 people experience persistent ill health 12 weeks after having Covid-19. Manifestations include ‘troubling physical symptoms, such as severe fatigue and increased risk of damage to the heart, lungs and brain’. It says people with ‘post-Covid’ have reported feeling stigmatised and unable to access and navigate services, and has called for patients reporting symptoms of long Covid to be included as part of the Covid-19 response.

But how should people with long Covid be managed – and what role do the physiotherapy workforce have in this? Identifying those with a need and working out how to meet those needs has been crucial, says Mr Gee. He was involved in developing a telephone screening tool (C19-YRS tool) to assess long-term rehabilitation needs in Covid-19 survivors, something that has since been recommended by NHS England for use in assessment clinics. Using tools like this has also been recommended by NICE, SIGN and the RCGP. Briefly, the tool screens for need and recommends targeted rehabilitation services, depending on people’s individual requirements.

Breathing pattern problems

Individualisation is important. According to respiratory physiotherapist Kelly Mitchell, writer of the blog The Breathing PT, there can be no one-size-fits-all approach to treating people with continuing symptoms. ‘Every single person with long Covid presents differently,’ she says. ‘For example, not every person has the classic presentation of relapsing and remitting fatigue – for some, it may be a small part of their presentation, whereas others have such significant fatigue that they are forced to stay in bed for days or weeks.’ 

In her experience – having treated her first long Covid patient in August 2020 – poor breathing has been an issue in everyone she has seen so far, but there is less awareness of this generally than other issues. ‘Breathing pattern disorder can start after a viral illness or a chest infection or a period of stress – and for a lot of people, having Covid is a stressful event. The fact that so many people are experiencing breathing pattern disorder isn’t a surprise to me, but what is a surprise is the number of people that are being affected by it. We’ve never seen it on such a big scale before. It’s difficult to know why.’

She accepts that her role as a respiratory physio could mean that she will naturally see more people with symptoms related to breathing than most, and that she might have an inflated idea of the prevalence of breathing pattern disorder as a result. Nevertheless, she believes that the role of poor breathing in Covid and long Covid warrants more attention and research.

The good news is that we are learning all the time, she adds. ‘From my perspective, I’m beginning to feel more confident with the way that people are presenting. I’ve had to adapt my usual approach as symptom relapses are common. Before I would quite happily start people doing breathing retraining for at least 10-15 minutes twice a day, whereas now I’m saying, you’ve got dysautonomia and you’re not tolerating standing very well, so I suggest we start with two-minute sessions two to three times a day and gradually increase the time. I’m making adjustments in my usual practice to accommodate the fragile nature of the long Covid recovery.’

Dealing with fatigue

Research is key to building an evidence base to find out what works in long Covid. Fatigue specialist physiotherapist Jessica Bavinton is conducting a study with the University of East Anglia to explore specialist fatigue rehabilitation therapy with Covid-19 patients with moderate and persistent fatigue. But while we look for the answers, the demand for help is already there, it’s growing, and it will be a big part of physiotherapy workload now and in the future.

‘If you look at the statistics and how many people have had Covid, and how many people are thought to have developed long Covid, it’s absolutely massive,’ says Ms Bavinton, founder of Vitality360. ‘Having said that, many people are likely to recover gradually on their own, but if the early evidence is anything to go by the demand will continue. There are something like 300 people on the waiting list of one of our local NHS long Covid clinics and it hasn’t even opened yet, so I think it will be an ongoing and important part of the workload for the physiotherapy services for some time to come.’

Using emerging evidence

Olivia Revitt is a cardiorespiratory lecturer at the University of Leicester and a Health Education England (HEE) subject matter expert. Last year, she helped develop a learning for health resource on Covid recovery and rehabilitation for HEE, then delivered a one-day training session for AHPs and others. Writing the modules from around May last year proved challenging, says Ms Revitt, partly because our understanding of what Covid was, and its implications, were developing all the time. ‘At first we thought the model of pulmonary rehabilitation would be able to be “lifted” on to Covid recovery, but it became clear in the summer that actually people weren’t recovering from Covid, and this long-haul or post-Covid syndrome was becoming more apparent,’ she says.

Although there isn’t a specific module on long Covid in the online resource, the training day contains a section on it, bringing in the emerging evidence and scenarios to help those attending to manage patients in this group. ‘That’s usually a well-received discussion,’ says Ms Revitt, adding that more training events will be scheduled throughout this year. 

‘It draws on the NICE guidelines and expert panels to try to gather an understanding of long Covid as it emerges. We think it’s affecting things very broadly – there will be lots of different systems involved, such as physical health, mental health, different co-morbidities, the heart, the lungs, fatigue, and so on. It’s still unfolding.’

Taking a holistic approach

This multi-system impact of long Covid means that teamwork will be important for physios who are managing it, as is being flexible and adaptable, says Ms Revitt. This means that physios will have to go beyond their specialism to ensure the patient is treated and managed holistically. ‘I think those who are treating long Covid need to have an appreciation of their wider skills as physios. People could come along with gastrointestinal problems, with fatigue, with chest pain, with musculoskeletal problems. So we need to go back to what our skillset is, which is looking at the patient, problem-solving, trying to treat their symptoms, but very much joined up with other members of the AHP teams and MDT and medics.’

Even physios who don’t work for a Covid service are likely to come across people with long Covid in their practice, so they will need to take this into account, adds Ms Revitt. ‘People may have long Covid alongside their current co-morbidities or as a condition in itself. So I think we all need to be able to recognise it, refer, support any treatments, but know that if we are doing different treatments, that aren’t to do with Covid, they might affect it. So just say we’re asking someone to rehabilitate their knee. They might be suffering significant fatigue with long Covid so we’ve got to adapt our practice – they might have to pace themselves, they might have to take rest breaks, they might have to plan a bit more.

‘We need to have one eye on the condition we’re treating, and be aware of whether they’ve had Covid, have they been through this?’

Giving hope to patients is important, adds Ms Revitt. ‘We’re far enough through this pandemic to know that there is long Covid. But also, if we can offer insight showing that people are coming out the other side – that they’re not left with this crippling fatigue and brain fog and the inability to work, then absolutely it gives people hope. And if we can support that with some evidence-based practice and good guidelines and management then I think that’s helpful.’

The CSP long Covid network offers access to peer support, collaboration and learning. To join contact Helen Harte:

Caroline Appel remembers only too well the day she became ill with Covid-19. As lead physiotherapist for a neuro community service in Camden, she and colleagues had been redeployed to in-patient services as the first wave of the pandemic took off.

‘At the time we didn’t wear masks,’ she says ruefully. ‘This was very much in the beginning when the NHS wasn’t as aware of the risks associated with not wearing masks. I became sick on 27 March 2020 – the same day as Boris Johnson got it – but I’ve been envious of his recovery compared with mine.’

Unlike the prime minister, Ms Appel is still suffering the effects of Covid almost a year on. Although she was initially quite ill with it – at one point requiring an ambulance – she wasn’t admitted to hospital so wasn’t counted as ‘severe’; nor did she have a positive test as community testing wasn’t happening at that point.

She tried to go back to work after five weeks, but then crashed. ‘I even went running, because I was thinking I should push myself more because I was deconditioning, potentially. But a week after trying to go for runs I had a bad relapse and then I was off for five months.’

For her, the relapse felt like the acute phase of the illness all over again, with symptoms including fatigue, chest pain, shortness of breath and dizziness. ‘I was coughing a lot and had pain with it, and I had problems with brain fog – I couldn’t think properly. I walked into things in the streets like I had balance problems. All of that was really worrying.’

Her GP couldn’t help, she says, because they had no access to Covid clinics in south London, but she contacted a friend and managed to get a referral to the Covid clinic at University College London Hospital. ‘Four months after becoming ill, I was assessed and told I’d had pneumonia in the second and third weeks when I felt so bad. At that moment I was glad to get an answer because for four months I’d been doubting myself and asking if I was going insane.’

She was assessed by a physiotherapist at the Covid clinic and given breathing exercises.

I thought of course I could do breathing exercises, I’m a physiotherapist, but I didn’t realise it would be so hard.

I had developed a breathing pattern disorder, which many people have after pneumonia, and I realised it was extremely hard to reset your breathing. So I struggled doing these exercises.’

It was even harder, she says, because the clinics were held virtually so she couldn’t see the specialist physiotherapist face-to-face. Although she was referred for community physio, there was an expectation that she would be able to do exercise. ‘I said I couldn’t do anything because my body was broken, my fatigue is crushing and I’m short of breath, and literally he said to me “let’s try to do some exercises”. I said that I couldn’t even do a bridge pose. I said I couldn’t even go outside, I walked to the living room and the garden then I need to lie down.’

A friend who is a respiratory physio helped her with her breathing (via Zoom) and also helped with her gradual recovery. ‘All the physiotherapists I saw really listened and they tried to help and they took me seriously. I’m not blaming anybody.’

Ms Appel began a phased return to work last November at six hours per week and is now up to 20. Her message to physios managing people with long Covid is simple. ‘Be kind and caring. Really listen to what the patient says. Keep an open mind and be really careful with what treatments you recommend. Be really careful with exercise.  I thought I was going to run it out – but that got me nowhere; that sent me off sick for five months and I’m still recovering.’

Key messages

for physiotherapists managing long Covid from by Jessica Bavinton, specialist fatigue physio:

  • Collaboration: all programmes need to be absolutely bespoke for that one patient – there really is no one-size-fits-all. They must be developed in collaboration with the patient
  • Thorough screening and assessment: expect to assess and advise on medical factors, and to up-skill where needed to spot signs of medical deterioration (especially neuro, cardiac or respiratory). Some patients may not have been assessed medically, may still be medically unstable and require your ongoing monitoring, They may also have symptoms that we would see as ‘red flags’ (eg chest pain, oxygen desaturation, tachycardia) so we need confidence in assessing and knowing when to refer on. Expect to screen for malnutrition, anxiety, depression & PTSDv
  • Symptom assessment management: there may be a number of factors a patient is dealing with, including fatigue, breathlessness, chest pain, joint/muscle pain, loss of taste/smell, cough, brain fog (amongst a number of others). Some of these may be improving and spontaneously resolve, and others you will need to develop a plan to help manage
  • Give hope: hearing a negative message at a vulnerable time can be devastating, so think carefully about the words you use. We are finding some people are very frightened by what they have been through, and worried about what might lie ahead. Let people know that most people are getting better, but that it could take some time. I tell them this is a new illness, so we don’t know for sure what the outcome will be. But that early evidence, and my own experience, says that most people are gradually getting better over time
  • Work with others: because of the range of issues experienced by some people with long Covid, its important  to work as part of a team which would include occupational therapists, psychologists, dieticians, physicians and medical specialists, speech therapists and nurses
  • Structure and routine: consider the importance of setting a sustainable daily routine to stabilise symptoms utilising non-incremental pacing strategies in the first instance. This would include addressing sleep, nutrition, and balancing different types of activities and rest
  • A gentle incremental approach, over time: start low, go slow. Take an individualised and steady approach back to function, social, work, physical activity or exercise. Going back too soon or too fast is likely to lead to a setback and be very demoralising. There may be some contraindications to aerobic exercise, but we are finding most people are responding well to a gentle, carefully monitored approach using functional everyday physical activities like walking and exercises
  • Emotional wellbeing and sleep: patients can understandably be sleeping badly and/or anxious for many reasons including health uncertainties, finances, family and social. Anxiety may make fatigue worse
  • Be confident but steady and patient: physios are very well equipped with skills to assess and manage patients using our clinical reasoning skills. However, don’t be tempted to push too hard or go too fast. You will need to be patient

The CSP has updated its Covid-19 rehabilitation standards for adults who are hospitalised due to acute Covid-19 or long Covid. The updated standards provide the latest national guidance, government regulations, evidence, expert opinion and lived experiences of people with Covid-19. The standards 'Rehabilitation of adults who are hospitalised due to Covid-19: physiotherapy service delivery' have been expanded to include any episode of hospital care, encompassing people with acute Covid-19 and Long Covid.

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