Long COVID: ‘It’s frightening not knowing where this will end up’


Long COVID is having a devastating effect on the lives of many UNISON members. Assistant equality officer Haifa Rashed reports on how the union is responding

Samantha Ellingham works on a surgical ward in a hospital. She contracted COVID-19 at work in April 2020 and has been on sick leave ever since.

“Throughout the months I just didn’t get better, I couldn’t understand it, I didn’t know what was going on to be honest. I got more and more symptoms,” she says.

In fact, Samantha describes 54 symptoms she has experienced since having the virus, including breathlessness and joint pain.

“Before [I caught COVID-19] I was the most hyperactive person, no one could keep up with me! I’m a busy person, I like doing things, going places. I know I can’t do these things like I did before. Some days I can’t even walk. Even getting down the stairs is difficult.

“If I’ve put a wash on, I’ve done something… It might be all I can do for the whole day.”

Samantha has joined the thousands of people, including many other UNISON members, who are now suffering from what is known as post-COVID-19 syndrome or ‘Long COVID’.

Most people who have contracted the virus are expected to recover within 12 weeks. However, approximately one in 10 people are experiencing ongoing health complications and symptoms long after the infection has gone.

Long COVID symptoms include (but are not limited to):

  • extreme fatigue,
  • breathlessness,
  • chest pain
  • joint pain
  • dizziness
  • problems with memory or concentration (‘brain fog’)
  • loss of taste or smell which may come and go.

While Long COVID affects people differently, according to existing research it is more likely to impact women and people over the age of 50.

Pat Coleman is an administrator at Sevenoaks Hospital. She caught COVID-19 at the start of 2021, was hospitalised for 12 days and has been off sick since early January. She describes how she is still experiencing unexpected symptoms since returning home, including severely decreased mobility.

“My life has changed dramatically,” she says. “Not being able to go to work at the moment, and not having the routine of going to work, is quite a shock to me. It’s frightening not knowing where this will end up… I’m in my 60s, but I feel like I’m 90.”

Long COVID doesn’t appear to be related to how severe the initial infection was – some people may have had a relatively mild infection but still experience ongoing health complications for weeks and even months afterwards.

“It’s almost like your life has been completely and utterly robbed,” says Kelly Raihani, a Family Liaison Officer who contracted COVID-19 at work in March 2020.

“Before COVID I was a fit and healthy person,” she says, “working full time and doing a masters part time. I was running, going to the gym 2-3 times a week, the type of person who never sat down.

“I’m now unable to walk. I can do two 15-minute walks a week. I’m under neurology – they think I have nerve issues. My MRI showed I have Myocarditis from COVID, it’s scarred both the valves of my heart. I’m now on heart medication, which I have to take every day. It’s been an absolute nightmare.”

Long COVID and disability law

While ‘Long COVID’ is not yet a formal diagnosis, it is likely that as more research is conducted it could be recognised as a long-term health condition and may ultimately qualify as a disability under the Equality Act 2010. This means that someone with ongoing Long COVID may be considered a ‘disabled person’ under the law.

According to the Equality Act 2010, a disabled person is someone who has a mental or physical impairment that has a substantial and long-term (usually interpreted as 12 months or more) adverse effect on the person’s ability to carry out normal day-to-day activities.

As we reach 12 months since the initial COVID-19 cases, it is very likely that workers experiencing Long COVID may qualify for protection under the Act, if they meet the requirements in the above description. This means that their employers would then be obliged to make ‘reasonable adjustments’, such as:

  • allowing the employee to work from home where possible
  • allowing the employee to work flexi or reduced hours
  • assigning a fixed shift (where shift work is involved)

It also means that the employee could take legal action against the employer if it can be proven that the employer discriminated against them due to their disability.

An industrial disease

The government has recently pledged £18.5 million towards research projects investigating the causes of Long COVID.

According to Chris Whitty, who has well as being the chief medical officer of England is the head of the National Institute for Health Research: “This research … will increase our knowledge of how and why the virus causes some people to suffer long-term effects following a COVID-19 infection – and will be an important tool in developing more effective treatments for patients.”

UNISON welcomes this research. However, in the meantime Long COVID is having a devastating effect on the lives of many of the union’s members, so many of whom were frontline workers who contracted COVID-19 at work.

UNISON believes there is strong evidence for getting COVID-19 classed as an industrial disease, separately and in addition to the Equality Act protections, which would help to allow those members most affected to get the support they need. The union is continuing to argue for this through the trade union representatives that sit on the Industrial Injury Advisory Council.

Best practice for employers

In recognition of the unprecedented scale and severity of the COVID-19 pandemic, employers should not treat any illness related to the virus as standard sickness absence leading to sickness absence capability triggers. UNISON recommends that employers conduct individual risk assessments with any staff who are experiencing Long COVID and to make reasonable adjustments for these staff.

Further information

Coronavirus: your rights at work

COVID-19 guidance for disabled workers and workers with an underlying health condition.

COVID-19: long-term health effects (Gov UK)

Long COVID support group



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