In her fight with severe COVID-19, Jennifer* was induced into a coma in the intensive care unit at the hospital where she worked in the early days of the pandemic.
“I literally died and came back,” she says.
Although it is unclear where the pharmacist caught COVID-19, within a couple of weeks her condition had worsened to the extent that she would need intubation.
“Then I was out,” she says. “And I woke up four months later.”
The ordeal ultimately left Jennifer severely deconditioned, having lost a significant amount of weight, with severe mobility problems, fibrosis in her lungs, and the trademark fatigue of long COVID.
“I’ve gone from being healthy, fit and well, to suddenly I’m living with at least two different chronic conditions, which are impacting massively on my life,” she says, adding that she continues to use a wheelchair for long distances.
Jennifer is one of thousands of healthcare workers who, having fought COVID-19 on the frontline of the NHS during the pandemic, are now facing their own battle with long COVID.
The National Institute for Health and Care Excellence (NICE) defines the illness in stages. After the first four weeks of infection, if symptoms persist, patients are described as having “ongoing symptomatic COVID-19”. If they persist after 12 weeks, the patient is diagnosed with “post-COVID-19 syndrome”. Both fall under the umbrella of long COVID.
According to the latest estimates from the Office for National Statistics (ONS), published on 1 June 2022, 4.6% of people working in healthcare across the UK have self-reported long COVID of any duration, making it the profession with the third highest prevalence of the illness after social care (5.4%) and teaching (4.6%). For comparison, across the whole population, the ONS estimates that just 3.1% have self-reported long COVID of any duration.
In healthcare workers, prevalence drops to 3.6% in those that first had — or suspected they had — COVID-19 at least 12 weeks previously.
For NHS trusts specifically, this figure translates to thousands of staff absences over the course of the pandemic. Data obtained by The Pharmaceutical Journal through responses to freedom of information requests from 178 NHS trusts revealed that, between 30 January 2020 and 11 March 2022, at least 10,370 staff members were absent from work for at least 12 weeks owing to illness from COVID-19 (see ‘Long COVID is exacerbating NHS staff shortages, with more than 10,000 long-term absences since 2020‘).
At least 1,979 staff members from the trusts that responded still had ongoing absences of 12 weeks or more as of 11 March 2022, attributed to illness from COVID-19.
Commenting on The Pharmaceutical Journal’s findings, Danny Mortimer, chief executive of NHS Employers, which represents NHS trusts, says the data are “a clear reminder of the real risk that COVID-19 can continue to have on people’s lives long after the first symptoms”.
“As with all long-term illnesses, NHS organisations are doing everything they can to support their staff who experience long COVID [with returning] to their roles.
“This will include holding regular conversations to understand their specific needs and whether any changes should be made to their working arrangements that might support a return to work.”
NHS England published guidelines in February 2022 on supporting NHS staff affected by long COVID, recommending that line managers “support colleagues on a one-to-one basis, seeking to understand and respect their [employee’s] experience of long COVID”.
The guidance advises line managers to “offer regular health and wellbeing conversations to check in and see how colleagues are feeling,” and to use these conversations to discuss “any reasonable adjustments to their working pattern, for example asking if working flexibly would support them to adjust back into the workplace”.
Line managers are also advised to “link in with local occupational health and wellbeing services (where available) to understand how they can support your colleague” and share details of other support on offer, including “their local post COVID service”.
But in many cases, having sacrificed their own health to provide the best possible treatment to patients with COVID-19, NHS staff are now not receiving that same level of care in return.
Return to work
Shazia*, a doctor working at an NHS trust in Merseyside, told The Pharmaceutical Journal that, when she tried to return to work, she was left to rely on her own medical knowledge and Facebook groups, as well as colleagues who accommodated her into their clinics, for support with long COVID.
After recovering from an initial COVID-19 infection in October 2020, Shazia “managed to work for two more months [before] becoming increasingly unwell” and taking sick leave with long COVID.
But she says she was never contacted by a human resources team or asked how she thought she caught the virus — and the occupational health team at her trust “hasn’t been able to give me specific advice about long COVID or how to return to work”, she says.
Upon her return to work after a year in hospital with severe COVID-19, the support from her employer soured over time.
“Discussing phased return was very ambiguous. It felt that my manager did not believe me. Reluctantly, they agreed [to] a day a week,” she says.
“But it was quickly apparent that they didn’t truly mean it. They would ask me to do tasks that require more than a day a week and the manager would not accept no for answer or that my day a week contribution was finished. Within a couple of months, the relationship with the manager became very strained.”
“They were no longer showing any empathy with my battle,” Shazia continues. “I started feeling that they were just interested in getting me out of the way. So on multiple occasions, managers would question if I was fit to be back at work.”
“No, I don’t want to be off sick. I’m back. I want to do it gradually,” she argued. “It didn’t feel empowering; it felt demoralising”.
“In fact, I felt dealing with management was the biggest challenge after COVID … they were stressing me out.”
This failure to support NHS staff is a problem that is being repeated across the UK.
In April 2022, the trade union Unison surveyed 1,916 NHS workers with long COVID — including healthcare assistants, nurses, porters and clinical support staff — and found that 46% said their employer was initially supportive, but that this changed as time went on.
The survey also found that nearly one in ten (9%) NHS workers with long COVID had been asked to attend a formal absence hearing, and 2% reported being threatened with disciplinary action or with the loss of their jobs.
“Most employers are sympathetic, but some health workers have been bullied and punished,” Kim Sunley, health and safety lead at Unison, told The Pharmaceutical Journal.
“Some have returned to work before they’ve fully recovered, fearful they’ll face disciplinary action or even lose their jobs.
“The government should follow the EU’s lead and recognise COVID-19 as an occupational disease, then sufferers could be compensated and treated more fairly, not harassed and made to feel guilty for taking the time they need to recover.”
Including COVID-19 as an occupational disease would entitle NHS staff to Industrial Injuries Disablement Benefits of up to £188.60 per week, depending on the level of disablement.
But the Pharmacists’ Defence Association (PDA) suggests that employers may already have a legal obligation to treat long COVID suffers more equitably under the Equality Act 2010, which requires employers to take steps to remove barriers faced by those with a disability.
“Pharmacists, like all NHS staff, should be treated fairly at work,” says Paul Day, director of the PDA. “In addition, under the Equality Act 2010, if they have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on their ability to do normal daily activities, that could qualify as a disability.”
“Individuals experiencing symptoms of long COVID should keep a record of the impact and contact the union if they are not receiving the necessary support from their employer,” he adds.
In addition to a legal right to fair treatment, NHS staff also “deserve … to be supported by their employers”, says Raymond Agius, co-chair of the British Medical Association (BMA) occupational medicine committee.
“Healthcare professionals working on the front line, especially during the first waves of the pandemic, were at a significantly increased risk of contracting COVID-19 as a consequence of their work.
“They were consequently also at a higher risk of developing long COVID,” he says, adding that accounts of some staff struggling to secure adjustments needed to successfully return to work have been “deeply concerning”.
“Employers have a duty to support their staff with long COVID by referring them for occupational health advice and considering the adjustments that could be made to their working patterns and activities,” he says.
“It is important that employers recognise that the condition affects individuals differently and that the adjustments one person needs may be different to another.
“Rather than adopting a blanket approach to managing long COVID, employers should have ongoing conversations with their staff to understand how their condition affects them so that they can mutually agree the support that is needed.”
Agius notes that employers also need better centralised support too, including “resources for the retraining, rehabilitation and redeployment of staff”.
“Centralised resources must also be provided to GPs, pharmacists and other healthcare professionals in the community, who, as employers, need to support the long-term recovery of their staff,” he says.
A Scottish government spokesperson said that “services and support are already being provided for those with long COVID across our full range of NHS services, including primary care, community-based rehabilitation services and referral to secondary care for further investigation and support where required”.
“We are also doing more to ensure that care is resourced and delivered across Scotland to support people in the most appropriate way, including for NHS staff,” they said, adding that it has invested £10m in a long COVID support fund to “enable NHS Boards to continue to develop and deliver the best models of care appropriate for their local population’s needs; this can include a Long COVID Clinic, if appropriate”.
A spokesperson for the Welsh government noted the “incredible job” that NHS staff had undertaken throughout the pandemic, adding that it “expects employers to support staff suffering from long-COVID, in line with NHS Wales policies”.
NHS England has yet to respond to The Pharmaceutical Journal’s request for comment.
Agius warns: “Failures to provide appropriate support can lead to staff being lost to the NHS entirely — which is bad for the employee, bad for patients and bad for the NHS as a whole, exacerbating retention problems and pressures on the remaining workforce.”
As the health service faces the longest elective care waiting list since 2015, with more than 100,000 staff vacancies as of May 2022, the NHS cannot afford to exacerbate these problems and lose hard-working staff.
Yet, when asked whether she had thought about resigning in light of the treatment she has received from her employer, Jennifer admitted that it is at the back of her mind.
“I am trying to salvage the situation,” she says. “Unfortunately, I don’t feel it is reciprocal.”
*Names have been changed to protect anonymity
How to access support for long COVID
The NHS across Great Britain has developed a variety of pathways to support patients with long COVID. In Scotland and Wales, the government has delegated responsibility to health boards for setting up community support for long COVID patients, while the NHS in England has set up a network of 89 long COVID clinics, which have been designed to bring together doctors, nurses, physiotherapists and occupational therapists to offer both physical and psychological assessments and refer patients to other treatment and rehabilitation services.
According to NHS England’s ‘Guidelines for supporting our NHS people affected by long COVID’, which was published in February 2022, NHS staff can access these clinics by GP referral. The guidance also says that NHS staff can access mental health support by seeking a referral to one of 40 hubs from their line manager.
However, previous versions of the same guidelines had also advised employers to review staff with long COVID “if a colleague is approaching long term sickness (for a period of 12 months or more)”, adding that “consideration of dismissal due to the colleague being unable to fulfil their contract should only be considered if redeployment is not an option”.
At the time, the guidance was met with backlash from campaign groups for healthcare workers who have long COVID, with the Pharmacists’ Defence Association advising “NHS staff faced with a potential employment review due to sickness absence, [to] contact their trade union for support”.