Many nurses across the UK are living with long Covid, and Mimi Launder spoke to some of them to find out how they are approaching recovery and what support they are getting from employers
Covid-19 has become something we are expected to live with – but hundreds of thousands of people who caught the virus are still struggling. Those living with long Covid may have symptoms weeks or months after the initial infection, often on a rollercoaster of relapse and recovery with little insight into when it will end – and it is likely the condition is disproportionately affecting nurses.
At least 122,000 (or 3.6%) of healthcare workers are experiencing long Covid, according to self-reported data from the Office for National Statistics (ONS) as of April 20211, the highest rate among any occupational group. That figure excludes agency staff and those working in primary care but does include community nurses and midwives. There has been no further update from ONS on long Covid rates among healthcare workers, but incidence among the general population has continued to soar – with 2 million people in the UK now living with the condition, according to data from June this year. 2 It comes as no surprise that in January this year, MPs on the all-party parliamentary group (APPG) on coronavirus estimated that more than 1.82m working days were lost to healthcare workers with long Covid from March 2020 to September 2021 across England’s 219 NHS trusts.3
Despite this, support for nurses with long Covid is patchy and dependent on employers. This means that while many nurses are given the time and patience required, some report being forced to return to work early or having to leave the profession altogether.
‘It’s a lottery’
Senior lecturer in children and young people’s nursing Dr Alison Twycross – who has long Covid – founded the advocacy group Long Covid Nurses and Midwives UK (LCNM). She says the treatment of healthcare professionals with the condition has sometimes been ‘immoral’, adding that even when people feel they are being treated well by an employer, the support can ‘drop off around the two-year mark’.
‘We have staff going on half pay, no pay, and being dismissed – and as a result having to sell their houses, downsize, rent out their flats, or move in with friends or family,’ she says. ‘People have been treated abominably. Union support can be patchy, managers don’t always understand about long Covid, HR doesn’t always understand and neither do colleagues.’
In April, research conducted by public services union Unison found healthcare staff with long Covid are returning to work early because they are afraid of losing their jobs.4 Of 1,916 healthcare workers who had long Covid, 68% said they were back in the workplace while suffering with symptoms such as breathlessness, fatigue, brain fog and aching joints, while 8% said they had been too ill to return to work.
Almost half (43%) said their employer did go the extra mile when it came to support to return to work – such as adjusting job roles, enabling a flexible return, or allowing time off without using up sickness or leave entitlement. However, a similar proportion (46%) said that although their employer was initially supportive, this changed as time went on. Almost one in 10 (9%) was asked to attend a formal absence hearing, and 2% reported being threatened with disciplinary action or even dismissal.
Dr Twycross advocates for a phased return – where an employee agrees with their employer a way to stagger how they resume work – but says not all employees are offered this: ‘People are being told they don’t need a phased return because they have had 18 months off on full pay. But staff need a bespoke, individualised approach, and the phased return will need to be 12 weeks or longer. Sometimes people don’t get that, or their phased return is too short, or they are asked to use accrued annual leave to cover it. Some have been given a year to find redeployment, others just four to six weeks. It’s a lottery.’
NHS England told Nursing in Practice that individual NHS organisations were responsible for managing the employment of staff with long Covid. A spokesperson underlined that NHSE had invested more than £220m and opened 90 specialist long Covid clinics.
But Dr Twycross warns that the ‘stress and anxiety’ experienced by staff with long Covid adversely affects their symptoms. ‘So ironically, not giving staff with long Covid the support they need is exacerbating long Covid symptoms and making it less likely they’re going to be fit to get back to work,’ she says.
‘No two cases are the same’
Kerry Davies, who is employed as a community nurse at University Hospitals of Morecambe Bay NHS Foundation Trust, and also has long Covid, says she has benefited from a supportive employer.
After contracting Covid in March 2020, Ms Davies returned to work but had to stop five or six weeks later because of returning symptoms. ‘One symptom would come, leave and then another would appear,’ she says. ‘I might get an upset tummy, and that would go, then I’d get a rash, and that would go, and I’d get brain fog, fatigue, coughing, heat intolerance, low oxygen saturations, neck pain, sore glands, and ongoing temperatures for around 15 months. Wave after wave of ridiculous symptoms.’ The situation got even tougher when cognitive and communication issues emerged: ‘I could no longer hang out the washing – I didn’t understand what to do with the peg – and couldn’t cross the road. My judgement went. I couldn’t work out how to put my phone on charge. I couldn’t read properly; I didn’t recognise basic words or letters.’
But the trust’s occupational health and wellbeing clinical lead and matron Clare Hill explains that the occupational health team touched in with Ms Davies – and every other staff member with long Covid – at least every four weeks. In this way, she says, the occupational health physician at the trust was ‘able to see some small progress in Kerry’s condition, which Kerry herself might not have spotted’.
Ms Davies has managed to advocate with LCNM and help with a long Covid network set up by her trust, who she is still employed by. She has also spoken out about her experiences, which are the sort of experiences the employer might be able to benefit from, Ms Hill says: ‘It’d be great if we could utilise some of those skills within the trust to be able to support and grow awareness for long Covid. It’s just about making sure that we do look outside of the box. We’re not giving up on anybody.’
The trust has looked at temporary redeployment into more manageable roles for staff with long Covid and considered ‘colleagues who are still signed off just coming in for small amounts of time to do a role they feel comfortable with’. Ms Hill continues: ‘It’s fair enough that some of them might not be able to act in the capacity they were prior to having long Covid, but we still value their skills and their contributions.’ Most of all, it’s about ‘trial and error’ and recognising that ‘no two cases are exactly the same’, she advises.
‘Lots of people still have lots to give’
Susannah Thompson, a GP and medical director in North Tyneside, who has long Covid, says she ‘never got back’ to her normal self or medical work after contracting Covid in April 2020. At first, she slept for about 20 hours a day and would force herself to wake up for Teams meetings for her medical director role. In early 2021, she started finding it difficult to walk and was diagnosed with postural tachycardia syndrome. She got a wheelchair, which she said was a ‘big step… accepting the condition wasn’t going away but that it wasn’t going to stop me’. In September 2021, she collapsed and ended up in hospital. She has not returned to work since, having developed chest pains, brain fog and more significant fatigue.
Dr Thompson believes there are lots of ways GP practices can support staff living with long Covid, but acknowledges the difficulties in primary care: ‘Hospitals have protected income, specific NHS directives and occupational health departments, and the potential to move staff from one area to another. A GP practice might only have a couple of practice nurses and a couple of GPs.’
However, practices should ask staff ‘what they can and can’t do’, and understand this might change from day to day as ‘long Covid is a very personal condition’. For example, some staff might find ‘they’re fine to take bloods all day but would struggle with a more complicated task’. She continues: ‘There are lots of people who still have a lot to give. For example, nurses are great with long-term conditions’, which is work they might be able to complete from home.
Dr Thompson also suggests that healthcare professionals with long Covid now have an additional understanding of what it’s like to be a patient and deal with uncertainty: ‘In primary care, there’s a lot of uncertainty with lots of conditions. But people with long Covid can understand it’s helpful to acknowledge that uncertainty, and that even though we don’t know what the underlying causes are and what the treatment is, there’s still hope things will improve and there’s still things that might help – starting with listening.’
‘If you support staff now, you’re earning their loyalty, and making them feel respected and worthwhile. Employers need to have patience with their staff with long Covid,’ Dr Thompson adds.
Julie Taylor had just started a role as a Parkinson’s nurse specialist setting up a community service in Hull when she got Covid. After developing brain fog and fatigue, she ‘recognised quite early on that she wasn’t going to be able to return to practice’. Instead, she took up a home-based nursing job at a different trust, although she is currently on sick leave after a ‘big relapse’.
However, Ms Taylor is staying positive. She has launched a podcast, called ‘Living with long Covid’, and become involved with LCNM. To help manage her condition, she follows the NHS 3Ps principle: pace, plan and prioritise5 but has added her own fourth P: positivity. ‘Not toxic positivity, but having some positivity is really important,’ she explains. ‘I have a space in my daily planner where I put something positive every day; it might even be having a chat with my sons or that it doesn’t take me three hours to get dressed. Celebrating the small wins…’ Following advice such as these 4Ps ‘is not a cure’, which can frustrate people, Ms Taylor acknowledges, but she adds that ‘personally, I’m in a position where I like to try anything that can help’.
Ruth Oshikanlu, who contracted Covid-19 in March 2020 while working in London as an agency health visitor, says she struggled with fatigue for months and relapsed several times before getting a long Covid diagnosis in April 2021. However, similarly to Ms Taylor, she tries to practise gratitude. ‘I have lost many colleagues and friends to Covid. As bad as long Covid is, it puts things into perspective. Focusing on regret and anger is not going to change anything.’ Ms Oshikanlu is now self-employed and has written a programme she is looking to fund, which will offer nurses with long Covid ‘the tools and support needed to cope’.
But like Ms Taylor, she believes more central support is needed. She says healthcare services are ‘so quick to throw people away’ once they are ill. ‘The longer you’re off sick, the less the system cares,’ she continues. ‘In fact, you become a burden where they will say you need to leave, which is why sadly a lot of organisations prefer agency staff – because they are easier to free up. Once I was unwell, I was told I was no longer needed as an agency health visitor.’
The NHS 3Ps principle for people recovering from Covid
- Pace: Give yourself permission to slow down
- Plan: Spread out tiring activities with rest in between
- Prioritise: Ensure you plan for tasks you need to do,
but also ones you enjoy
Calls for nationwide support
In January this year, the APPG on coronavirus called for long Covid to be recognised as an occupational disease – which would help standardise support and improve data collection on the condition – and a compensation scheme for frontline workers unable to work because of the illness. Likewise, Unison has been campaigning for the UK to recognise Covid as an occupational disease. ‘Most employers are sympathetic, but some health workers have been bullied and punished,’ explains the union’s head of health Kim Sunley. ‘Some have returned to work before they’ve fully recovered, fearful they’ll face disciplinary action or even lose their jobs.’
However, such progress has yet to happen. In May the Equalities and Human Rights Commission (EHRC) recommended that long Covid should not be treated as a disability, a designation that would have given people with long Covid protection against discrimination in the workplace, and required employers to make reasonable adjustments, such as flexible working.
Many of the healthcare professionals who spoke to Nursing in Practice agree decision makers must do more to support healthcare workers with long Covid. However, Scotland announced last week that healthcare staff with lose their Covid sick pay – including for long Covid – on 31 August this year, and move onto their contractual sick leave entitlement. . In Wales, full pay will continue until 30 June – but from 1 July, guidance released this week stated that individuals who have received full pay for 12 months or more will move to half pay, while those who have been absent for less than 12 months will continue to receive full pay until 12 months on from the start of their sickness absence. Currently, in England, guidance specifies that full pay for those with long Covid should still be in place – for now. The picture in Northern Ireland is unclear but most staff are on full pay, according to LCNM. General practice did receive an extra £120m for its Covid Capacity fund, in part to support sick pay, although this ended in September 2021, and Dr Twycross says variable sick pay across general practice is a concern for nurses with long Covid. She also highlights that some employers are choosing not to follow the guidance in England, and Dr Thompson adds that the guidance should be clearer on how to support staff flexibly.
Dr Twycross summarises: ‘The problem is consistency. There needs to be more pressure for national funding and a national strategy.’
Dr Thompson stresses, too, that healthcare professionals who are living with long Covid ‘likely caught it in the line of duty’ during some of the toughest times UK healthcare services have ever faced. ‘Being a nurse or doctor can define who you are,’ she says. ‘It’s not just a job, it’s a life.
‘You’ve given up your weekends and evenings so much over the years to train, and there’s so much experience each nurse or doctor has to offer. We should be supporting them in any way we can.’
What is long Covid?
- Long Covid is considered an illness with a complex or non-linear recovery, which means it is likely that relapses will occur.7
Long Covid includes:
- Ongoing symptomatic Covid
Symptoms continue for four to 12 weeks after infection.
- Post-Covid syndrome
Ongoing symptoms continue for longer than 12 weeks and cannot be explained by any other condition.
Common symptoms of long Covid include:
- Extreme tiredness, dizziness, shortness of breath, heart palpitations, chest pain or tightness, and problems with memory and concentration (‘brain fog’). But symptoms are wide-ranging, with a University College of London study in July 2021 finding reports of more than 200 symptoms across 10 organ systems.8
- ONS. Prevalence of ongoing symptoms following coronavirus,
1 April 2021. Link
- ONS Prevalence of ongoing symptoms following coronavirus,
1 June 2022. Link
- APPG. Long Covid report, March 2022. Link
- Unison survey. Link
- NHS England. Your Covid recovery. Link
- NHS England. Guidelines for supporting our NHS people affected by Long Covid, February 2022.
- Chartered Society of Physiotherapists. A safety-first approach to long Covid assessment. 2021. Link
- UCL. Identification of over 200 long Covid symptoms. 2021. Link