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

12 thoughts on “Long COVID: ‘It’s frightening not knowing where this will end up’

  1. Tracy says:

    I too have long term Covid. I was A symptomatic (except for sever nausea) As i have under lying conditions i thought i had got away with the Covid very lightly. However, 3 or 4 weeks after testing positive, i got the cough followed by hair loss which i didn’t even know about but my GP told me. I went on the internet and there it was.
    I know i am one of the lucky ones but not doing the future or how long term Covid could develop is scary.

  2. Stuart Needham says:

    I had covid in mid-march 2020 – before symptoms were known, and spoke to my dr. via telephone appointment that week about my breathlessness and the cough I had, and because I needed to use my Ventolin more and more he said I had COPD and prescribed a new type of Ventolin.
    My breathing and chest pains have got worse as the months have gone by – I’ve had 5 tests – all clear – and 4 weeks ago I had my 1st vaccination
    8 weeks ago my chest pains started getting words that my dr. from a telephone appointment sent me to A&E as he thought I was having a heart attack – all checks and x-rays were clear – but still the chest pains, muscle aches, breathlessness, along with fatigue continue – I got prescribed co-codomol and Voltorol cream – and the symptoms are still the same if not worsening – I’ve had another set of blood tests and awaiting another x-ray for a triage appointment – my feelings are that medics are in the dark about long covid and are clutching at straws whilst people suffer

  3. Louise Clark says:

    I believe that I contracted covid at work on a covid 19 admission ward. I was given no support and had to rehab myself as a nurse over the next 8 months. I left this job due to the poor professional standards within the trust. I rejoined a trust that I had previously worked for. In both trusts in Scotland and England I have received no support and no follow up. Its highly disappointing and i am regaining my health on my own. This isn’t humane or basic civil behaviour. I feel that changes need to be made for NHS staff. We néed supported.

  4. Sally-Ann says:

    This is a very interesting article. I have been off with post covid complications in an FE setting. Although covid related illness will not trigger and sickness interviews by HR, it appears that as a part time. part year employee I will owe back some holidays. IE: – a sickness period of 28 days, including weekends, will result in either working an extra 6.5 hours in the academic year or a pay loss of the equivalent. This seems very unfair in a pandemic.

  5. Mick Alcott says:

    I have suffered headaches, lack of concentration, short term memory loss, and dizziness. This has been the case since November when I was laid up with Covid 19. I had been shielding since March 2020 returning to work in October for 2 weeks when I contracted Covid. Now I have a constant headache which is so severe it wakes me up in the night and I am un able to concentrate on anything for more than a few minutes, I can put something down and forget where I put it 2 minutes later. I also find it hard to get words out without thinking and quite often use the wrong word, I just want it to go away.

    1. Stephen Brown says:

      This is exactly what I am experiencing since September 2020. Now with increased Anxiety.

  6. Nico says:

    I am personally very pleased if this issue of Long Covid which is a post viral fatigue/ME/POTS will be taken seriously and also if employers will offer their support. This is not just an industrial illness, but as mentioned in the article for some of us it’s been nearly 12 month, which personal will reach this month at the end. What is the way forward and at what point all our us out there will not feel like faking and cheaters that have illness in our head only? Do normal people think that we have not better lives to leave than planting lies and misleading symptoms? We do need support from all the doctors out there and in Occupational Health to offer their support and not makes things even more difficult than they already are.

  7. Firuj Miah says:

    I contracted covid19, I still feel weak, tiredness, fatigue. Most mornings I feel so tired I do not want wake up. It is the fatigue and also memory loss/ forgetfulness.
    I am pushing my self and trying to ignore and move on and hoping it will go away.
    I have developed pains also pins and needle, this may be due to covid19.

  8. Wendy Hailes says:

    I believe i had Covid December 2019, my work colleagues had the same symptoms and my family, i had a hacking cough, felt rough, easily worn out, heavy legs, skin i could not touch, headache, loss of taste, unable to breath properly hence i could not even bare candles being lit, slept a lot. I had 2 weeks of work 2 lots of antibiotics and a course of steroids. My breathing is now worse and i struggle to walk far without becoming breathless, i tire easily, i have standby recovery medication of antibiotics and steroids, i am on inhalers and due to Covid have not had a recent review. As i was not diagnosed with Covid i am unsure if my GP will understand if i have long Covid, i did an immune test but it did not detect if i had it, but that was 15 months later.

  9. Rosemary says:

    I have long convid since December I returned to work January for two weeks than I start have side effects, which I can’t work no and sleeper night short breath tidiness headache. I have informed my Gp but there is nothing he can do, my company keep on calling at home asking me when will I resume at work where can I go for help

  10. Hasu Parmar says:

    I caught covid 19 in early January 2021, did not know anything about long covid illness at the time. I still suffer from fatigue, tired, brain fog, cognitive impairment and strange feeling when I am outside like blurred vision etc. How am I suppose to go back to work with all these symptoms. I constantly worry I might not fully recover. No one can help to solve my problems. Now I am confused about getting the covid vaccine as I worry it may make covid symptoms worse and may never fully recover.

  11. Ste Brown says:

    Trying to explain long covid, whilst experiencing long covid is hard enough, never mind trying to cope with it daily. I had covid in September 2020, initially felt like I had been hit by a bus, leg and back pain was unreal, after finding alternative covid symptoms on American websites, I got the UK symptoms days later, cough, temp, and loss of taste and smell.
    Weeks later, tiredness, fatigue, unusual pain all down left side, leg pain, neck pain, breathlessness, lack of concerntration, forgetfulness, chest pain and headaches all existed. Blood test and chest X-ray revealed nothing worse thankfully.
    Struggle daily with tiredness, headaches, brain fog and concentration as well as Anxiety.

    Long Covid really exists and more employers need to recognise this.

Leave a Reply

Your email address will not be published. Required fields are marked *