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Nurses struggling with debilitating symptoms deserve proper rehabilitation, not just counselling on how to cope
It has been more than two years since the World Health Organization (WHO) declared the spread of COVID-19 a global pandemic; in the UK alone there have been 21.9 million cases to date.
Nursing Standard. 37, 7, 26-28. doi: 10.7748/ns.37.7.26.s16
Published: 06 July 2022
While more than 190,000 people died with COVID-19 in the UK, many others were – and continue to be – treated in hospital for severe symptoms.
And while precautions such as mask wearing and social distancing have now ended, for the 1.5 million people – or 2.4% of the UK population – experiencing long-COVID, the legacy of coronavirus is still very much a part of their lives.
A Unison survey of 1,900 healthcare assistants, nurses, porters and clinical support staff who have had long-COVID or are still experiencing symptoms found:
» 68% returned to work despite having symptoms including breathlessness, fatigue, brain fog and aching joints
» 43% said their employer was highly supportive of them when they returned to work, for example offering flexible hours and adjusting job roles
» 46% said their employer support changed as time went on
» 9% have faced formal absence hearings
» 2% have been threatened with dismissal
Long-COVID is classified as symptoms that persist for more than 12 weeks following a positive test. The most commonly reported are extreme fatigue, shortness of breath, problems with memory or concentration known as ‘brain fog’, insomnia, cough, depression and anxiety, and nausea, says the NHS.
The Office for National Statistics (ONS) estimates the number of healthcare workers with long-COVID to be around 156,000. The Long COVID Nurses and Midwives UK action group estimates there are 10,000 nurses in England alone experiencing long-COVID.
NHS staff in England who are off with COVID-related sickness, including long-COVID, are currently entitled to full pay, although this is under review. The Northern Ireland Department of Health and the Scottish Government told Nursing Standard their guidance is the same as England’s and is under review. The guidance applies to all staff employed by the NHS, including those who work in social care settings.
But in Wales, the entitlement for NHS workers who have been off for more than six months will change to half pay from the end of June.
NHS England and NHS Improvement published updated guidance in January that outlined how trusts could dismiss staff who were off sick with long-COVID for 12 months or more and could not be redeployed. This information has since been removed, although the NHS will not confirm whether it remains policy.
Nurses at last month’s RCN congress backed a call for equitable and effective support from the NHS and employers for staff with long-COVID.
Community nurse Kerry Davies developed COVID-19 in March 2020, with symptoms including rash, brain fog and a headache ‘like no other’.
She returned to work after a fortnight, but soon relapsed; this time her symptoms were so severe she was unable to talk to her family and had to learn new ways to manage the illness. ‘I would get stuck on words and just keep saying them. I had slurred speech, like I had a head injury,’ she says.
While many nurses have felt abandoned by their employers, Ms Davies says her occupational health team at University Hospitals of Morecambe Bay NHS Foundation Trust has been invaluable in her recovery.
‘I don’t know how other nurses are getting through this without the support of occupational health,’ she says. ‘It’s like no other illness I’ve ever experienced.’
Ms Davies has now made some progress, and hopes to return to nursing at some point. But simply half an hour’s talking seems to slow her cognitive function and she begins to slur ‘like I’m drunk, or have been hit over the head, and I get very muddled’.
Louise Cummings, a Hong Kong polytechnic university professor who specialises in communication disorders, has consulted with Ms Davies about her condition and likens her symptoms to that of a traumatic brain injury.
University Hospitals of Morecambe Bay occupational health and well-being clinical lead and matron Clare Hill says her team strives to ‘hold on’ to colleagues who have long-COVID, with monthly catch-ups with those off sick.
The fact these staff know they are still part of the organisation is an important aspect of recovery, she believes, as is supporting them to come back to work in a role that suits them while they recover.
‘From a rehabilitation side, it does make a difference that they get up, get dressed and know they are going to work, even if it is for two hours,’ she says.
‘Giving nurses an opportunity to return to a different role for one or two hours a week to dip their toe in is important.’
Regardless, many nurses are reporting poor support from their employer, with some saying they feel abandoned and forgotten.
Long COVID Nurses and Midwives UK chair Alison Twycross says that some organisations are choosing not to follow NHS guidance on supporting staff with long-COVID.
‘I have been in touch with many nurses who report inconsistent practices, with staff being put on half or no pay almost overnight while others remain on full pay,’ she told Nursing Standard.
‘Attitudes to staff with long-COVID appear to be split between employers who feel “people are a bother” and those who see staff as their greatest asset and are prepared to support them through the recovery process.’
Dr Twycross adds that given the potential impact on an already decimated workforce, NHS England and NHS Improvement should be doing more to ensure consistency in how staff are supported and managed. However, NHS England and NHS Improvement insists it is up to individual trusts to implement guidance.
‘I’m seeing patients whose lives have been shattered by long-COVID. There’s a visceral fear that they are here forever’
Graham Burns, NHS national specialty adviser for long-COVID
The ONS says that 18% of people with long-COVID are significantly limited in carrying out their day-to-day activities, and people working in healthcare are the most likely to be affected.
Consultant respiratory physician and lecturer Graham Burns is the NHS’s first national specialty adviser for long-COVID. He says that beginning treatment for people who have been left waiting months for a referral can feel like turning around an oil tanker, but he is adamant that recovery can be achieved.
‘I am seeing patients whose lives have been shattered by this. There’s an absolute visceral fear that they are here forever,’ he tells Nursing Standard.
Dr Burns says that this belief, often borne out of delays in treatment and even scepticism in some quarters, is a significant barrier to recovery.
He says it is imperative that anyone referred to a post-COVID clinic is given a comprehensive physical assessment to rule out other possible illnesses, and explains what his patients can expect.
‘They’ll have a consultation with a respiratory physician who will take a full history, they get detailed lung function tests, rare blood tests and if needs be we’ll get a CT scan of the thorax. They will see a physiotherapist and a phycologist.’
Dr Burns says it is common to see patients with insomnia, along with obstructive sleep apnoea, often caused by weight gain during successive lockdowns.
‘Some nurses are being dismissed because they are unable to confirm when they will be fit for work. This feels immoral’
Alison Twycross, pictured, Long COVID Nurses and Midwives UK
He also says people who have long-COVID often have no apparent physical abnormalities during their health check, but are nevertheless experiencing symptoms such as breathlessness, fatigue, anxiety, insomnia and other symptoms.
He adds that he is optimistic that, with time, rehabilitation and treatment, anyone can recover. ‘It won’t be instant, it won’t be quick. It may feel like turning around an oil tanker to start, but once it does it gets easier.’
Recovering from long-COVID can be a lengthy process and employees will need to be supported to recover at their own pace.
Line managers can support nurses by:
» Having regular well-being conversations to see how staff members are feeling when they return to work
» Allowing flexible working hours and a phased return to help them adjust back into the workplace
» Offering staff a move to a role that is less demanding, both physically and cognitively
» Recommending that staff members join support groups and peer networks such as Morecambe Bay Nursing and Midwifery Long-COVID Network and Long Covid Nurses and Midwives UK
» Signposting staff to multidisciplinary post-COVID rehabilitation clinics, where available – staff can be referred via a GP or occupational health
Source: NHS Employers
However, while Dr Burns strives for consistency at his Newcastle-upon-Tyne post-COVID clinic, many nurses elsewhere are still reporting difficulties in accessing treatment, largely due to lack of services where they live.
Dr Burns adds that employers need to be patient with staff who are off with long-COVID, particularly if they lack access to recovery services.
‘One thing I would say to employers is, be patient with your nurses,’ Dr Burns says. ‘You’ve got a precious workforce there, who are highly skilled – you don’t want to waste them. If you take the attitude “well, they’ve got long-COVID, they’ll never get better” then you’re going to waste a whole lot of people.’
Before the pandemic, ward sister Amy (not her real name) was working in community hospital in south west England, on a rehabilitation ward for older people.
Early in the pandemic, the ward was given over to the care of people with COVID-19. ‘People were basically sent to our ward to die. We didn’t have PPE,’ says Amy. ‘Soon COVID had ripped through our unit and most of the staff were off sick.’
Amy contracted coronavirus in April 2020 and developed headache, fatigue, and burning nostrils. When she went back to work after six weeks off it became clear she was struggling. Eventually diagnosed with long-COVID, Amy says she found it almost impossible to get treatment in her area, and instead of rehabilitation and treatment for her shortness of breath, fatigue, brain fog and chest pains, she was offered counselling on how to ‘cope and live with’ long-COVID.
Meanwhile, her trust wanted her to return to her previous role, even though she struggled to work an hour on a shift.
‘This disease is ruining lives and careers,’ she says. ‘It breaks my heart to think of people losing jobs they are dedicated to. I’m a nurse, it’s who I am. It destroys me that I can’t do what is needed of me.’
Although support from her employer was initially scant, things have improved. She was offered temporary redeployment in a non-clinical role and her increase in hours is gradual.
Amy advises staff struggling to get their employer’s support to ask their union for advice, and not be afraid to make suggestions to the management team.
‘I have been seen regularly via video link by the occupational health team, but their recommendations have been brushed over or delayed. But if I can still make a difference for the patients, relatives, and the team, then that is why I’m here.’
Meanwhile, campaigners with Long COVID Nurses and Midwives UK, along with Green Party MP Caroline Lucas, want long-COVID to be recognised as an occupational disease. This would make nursing staff who contracted coronavirus at work eligible to claim compensation.
Chair of Westminster’s all-party parliamentary group on coronavirus Layla Moran MP agrees key workers in this position should be compensated.
‘Long-COVID presents a huge workforce challenge, it is crucial the government recognise it as an occupational disease, provide formal guidance to employers and create a compensation scheme for key workers unable to return to work after catching the virus protecting others.’
NHS guidance of long-COVID and how to support the workforce tinyurl.com/NHS-supporting-staff-longCOVID