A team of experts has been assembled in Leeds - thought to be among the first of its kind in the country - to tackle what many fear will be a major aspect of the pandemic.
National data suggests between two to five per cent of Covid-19 patients will go on to develop ‘long Covid’ - suffering symptoms beyond 12 weeks - leading to an estimated 980 people in Leeds from the first wave alone.
The city’s specialist ‘Covid After-Care team’ began work in September, just days after being set up, in a fast-moving bid to reach those in need in Leeds - and what they have uncovered so far has been startling.
From the first 188 patients referred in, they have found the average age was 48, with more women than men, none had originally been hospitalised and many were previously extremely fit including personal trainers and athletes now struggling for breath at rest.
The findings have overturned initial expectations that those most affected would be those who had suffered more severely initially - such as the ‘at-risk’ older age groups - and that symptoms would be mainly respiratory.
Dr Bryan Power, a GP and clinical lead for long term conditions at NHS Leeds Clinical Commissioning Group, who helped set up the team, said: “It’s not the cohort we expected to see.
“They are of a younger age than we expected - including a 17-year-old - and also presenting with a complex range of symptoms. Some patients haven’t been able to work for six months.”
The Leeds team has been reporting its findings nationally and globally as medical professionals across the world desperately try to gather knowledge on what is still an emerging picture with an unknown patient group.
Rachel Tarrant is the Covid After-Care team’s co-ordinator at Leeds Community Healthcare NHS Trust, having been “parachuted in” from her role as a respiratory physiotherapist in Leeds hospitals, working on the front-line on Covid wards.
She said: "It’s been very fast-paced and we have had to change the way we work as evidence comes in, to get things right for patients” but added: “It’s really exciting for Leeds to be at the forefront of it all.
“There is a huge host of symptoms but the main ones we’re seeing are fatigue, shortness of breath - that can be at rest as well as exercise; cognitive problems - people suffering short-term memory problems, concentration, many call it ‘brain fog’.
“Pain is another big thing - it can be all-body pain, quite often chest pain or lung pain, headaches.
“And tachycardia - the heart can be racing when they’re sat on the sofa or on a walk; autonomic dysfunction, random hot sweats, temperature, dizzy when standing.
“And as a consequence of these symptoms we’re finding a lot of anxiety.”
She said: “The patients we are getting through now are the ones that struggled in March, April, May and they are really struggling now.
“We are finding some of these patients are extremely sick and we need to see them to measure their oxygen and heart rate.
“We have 30 or 40-year-olds that normally were out running miles and miles a day that are at home and struggling to breathe at rest and not able to work.”
Referrals come via GPs - though currently only 38 per cent of the city’s GP practices are referring in, a figure which the team hopes will grow as word spreads about their existence.
Rachel and a colleague then triage the patient with a lengthy questionnaire before deciding a treatment plan, which is mainly symptom-management therapy delivered either face-to-face, over the phone or virtually.
The Covid After-Care team has dedicated physios, occupational therapists, dietitians and those who specialise in respiratory or neurology.
And once a week they hold meetings with a squad of medical consultants, in fields such as respiratory, cardiology and rehab, for expert advice on more complicated patients.
Dr Stephen Halpin is one of those consultants and was instrumental in setting up the Covid After-Care team in Leeds.
Working in rehabilitation medicine at Leeds Teaching Hospitals NHS Trust and Leeds Community Healthcare NHS Trust he had watched as the first wave unfolded, aware of the likelihood of long-lasting effects - as with any critical illness.
He said: “We thought it was our responsibility to think about the long-term impact but we didn’t expect it to be a big aspect of the pandemic.”
During those first few months, he set up a study to follow those being discharged from hospital - discovering they faced ongoing problems with fatigue and breathlessness.
But he said it soon became clear it wasn't just those who had been in hospital who were affected.
He said: “During that time there were also more anecdotes and evidence emerging from all over the place, that surviving the initial infection wasn’t the end of the story for lots of people and survival doesn’t necessarily equate to recovering to what you were before.”
Dr Halpin and fellow health chiefs from across the city then worked quickly over the summer to set up a pathway - a clinical route for patients in need to access help - with the team ‘going live’ just a week after its formation.
Among the therapy techniques being used is teaching patients how to monitor their ‘perceived breathlessness rate’ and recognise if their oxygen levels are dropping dangerously low - levels which Rachel says she has witnessed fall into the 80 per cent range in a post-Covid patient who was exercising. Anything below 96 per cent oxygen saturation is considered dangerous.
Patients are also encouraged to keep a ‘fatigue diary’ to understand how they are feeling and why.
Rachel said: “People have a really good day and think ‘I’m fine’ and then over-do it and it sets them back quite massively for a week or so. It’s really detrimental to recovery.”
The clinicians all agree that the process to rehabilitate long Covid patients appears to be a slow one.
Dr Halpin said: “What we are finding most effective is understanding that this is going to be quite a long recovery and having rehabilitation appropriate to that means taking things quite steadily, aiming for gradual improvements.”
He added: “This pandemic is not just about survival, it’s about quality of life and return to full roles and making a full recovery.”
Rachel said: “We haven’t had anyone come out the other end yet. It’s a really slow rehabilitation.
“We hope these patients are going to recover - but there’s no timescale. We’ve never treated anything like it before.
“We’re trying not to compare it to chronic fatigue or ME because this could be something purely Covid-related.
“It’s about trying to stay positive though and hoping it will improve. But I can’t offer reassurance to the patients. We can support them as best we can but only time will tell.”
But what is certain is the Leeds team’s workload is set to soar.
Rachel said: “[The estimated] 980 people is still a high number from the first wave and obviously we have subsequent waves going on to affect more people. We have 188 patients at the moment but that rate is increasing all the time. More and more people are going to be referred in - we are going to be inundated.”
She warned people to take Covid-19 seriously.
“I’ve seen both ends - working in respiratory at St James’s, it’s scary. And with the people that we are working with on this pathway and how their life has changed so dramatically - you would never wish it on anyone.”
Leeds' pathway is still constantly adapting as more and more evidence emerges, with the team running research alongside, contributing into national and international discussions.
Indeed, a ‘Yorkshire screening tool’ developed by Dr Halpin and colleagues to assess patients on a common scale has been recommended in NHS commissioning documents and adopted across the country.
Dr Halpin said: “If we have a shared way of measuring impact and recovery then that is a big contribution to our understanding of long Covid as a condition.”
He added: “It’s been a real rollercoaster. Good and bad things really. Obviously really challenging and stressful but also really positive. Like the level of willing collaboration across the whole sector of the city. It’s really fantastic to be part of. Such hard work from people and will to make something happen quickly because we knew it was required immediately.”
**Anyone in Leeds struggling with ongoing symptoms should consult their GP in the first instance.
Local information on recovering from Covid is available at https://www.leedsccg.nhs.uk/health/coronavirus/recovering-from-coronavirus/Also, www.yourcovidrecovery.nhs.uk is a self-care resource that people can access to help support Covid-19 recovery and the management of ongoing symptoms.
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