Over half of Leeds' long Covid sufferers still haven't fully returned to work, says city's trail-blazing Covid after-care team
“People need to be more worried about long Covid” - That’s the warning from the co-ordinator of the city’s trail-blazing Covid after-care team which has been leading the way nationally on tackling the debilitating condition currently affecting many hundreds in Leeds.
With an ever-growing caseload, the team has had to more than double in size since it first formed in September 2020 as it strives to support those in Leeds struggling with the long-term effects of Covid-19
With the impact of the third wave still to hit, Rachel Tarrent, the team’s co-ordinator, said it is becoming clear long Covid “is not going away”.
She was drafted in from her role as a specialist respiratory physiotherapist at Leeds hospitals to run the team three days a week but now it’s a full-time job, with recruitment ongoing to meet increasing demand for the team’s services.
Referrals from across the city now total over 750 - averaging at 28 a week - but with long Covid estimated to develop in 12.5 per cent of people who test positive for the virus, many more are likely to be suffering in silence.
And recovery is long and slow, with Rachel warning: “We haven’t discharged many.”
The team sees those who are still suffering prolonged symptoms 12 weeks or more after their initial infection.
As previously reported in the Yorkshire Evening Post, they have found the average long Covid patient to be 48, previously fit and healthy and with the condition affecting more women than men.
Recent stats of the team’s current caseload also reveal 86 per cent were not admitted to hospital during their initial Covid battle and 56 per cent are still off sick from work, have lost their jobs or have to do modified hours.
NHS workers also account for 30 per cent of their patients..
Rachel said: “People are absolutely suffering and obviously I have seen first hand and seen patients on a daily basis.
“It’s really frustrating, you want to shout it from the rooftops.
“People think ‘If I catch [Covid] I will be fine’. Yes you might be but you might get long Covid. You can catch it, be asymptomatic and still develop long Covid.
“People need to be more worried about catching long Covid. I have lots of colleagues that are struggling. Some are back at work but they’re nowhere near back to normal.
“We don’t know if it’s going to be a long-term condition or whether they come out of the other side in a year’s time. We just don’t know.
“It has to be taken seriously.”
The team is still getting referrals from those who contracted Covid 16 months ago, at the beginning of the pandemic.
“We have done a huge amount to upscale the team on delivery to try and reach demand and it’s really difficult,” Rachel said.
The Leeds Covid after-care team, which is part of the Leeds Community Healthcare NHS Trust, is the only one in the UK to have in-house specialists, such as occupational therapists, physiotherapists and dietitians, dedicated to long Covid - rather than referring patients into existing, and already stretched, services.
They have been held up as a model of care for other trusts to follow, being invited by NHS England to present webinars of their work.
The team’s long Covid rehab booklet has been picked up by health trusts across the UK, as has an app outcome measure for use in long Covid after it was recommended by health chiefs at NICE and NHS England.
Clinics are now in the process of being set up across the city to help more people to access their services, where patients will be assessed before enrolling on a ten-week ‘symptom course’ which covers everything from breathlessness management, safe return to exercise, nutrition, supplements - as well as the medical emerging themes behind long Covid.
The current theory, Rachel says, is that the body is stuck in ‘flight or fight mode’ - a state of the autonomic nervous system which sparks a physiological reaction to a perceived threat.
“It’s absolutely exhausting for the brain to be at that level of high alert all the time, looking for the next threat.
“It affects all sorts of system controls - heart rate, breathing, digestive, circulation.”
Their work focuses on calming that response down by invoking its biological opposite in the autonomic nervous system, known as the ‘rest or digest’ system - through breathing, meditation, relaxation.
But recovery is still taking time, says Rachel.
“Most people aren’t bed bound but if they over-do it then they can be quite unwell for a day or so. Sometimes they have relapses. Sometimes they’re up and about but with ongoing symptoms of breathlessness, fatigue, brain fog, joint pain, muscle aches and pains, severe headaches, migraines and tinnitus.”
She added: “People are slowly improving. Their breathing can be managed better, fatigue levels are better through their pacing. But it takes time.
“And it can be frustrating for this age group because they are young and probably this is the first health trauma that they have encountered. A lot are fit - ultramarathon runners and athletes that are really struggling.”
Rachel said she is “passionate” about helping employers understand the implications of long Covid but she remains “very concerned” that the Government’s removal of the work-from-home guidance from July 19 will mean many struggling with long Covid will feel forced to return to the office.
She said: “Just getting to work might be enough for them not to be able to do much [once there]”.
Work is also ongoing to try to access potential patients in under-represented communities such as BAME, areas of Leeds known to have had high numbers of Covid cases and the elderly.
Rachel said: “We are working hard to improve access and knowledge of the service to reach out to everyone in Leeds.”
For more information about the team and long Covid visit: https://www.leedscommunityhealthcare.nhs.uk/our-services-a-z/long-covid-community-rehabilitation/
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