Weekly Poll – Long Covid (Week Beginning 28 June 2021)

Each week Disability Equality Scotland send out a poll question to our members on a topical issue.  For the week beginning 28 June 2021, we asked a question about long COVID.

Download the summary report (PDF)

Results

Question 1. Do you think long COVID should be considered a disability as defined under the Equality Act 2010? 

  • YES – 89% (143 respondents)
  • NO – 11% (18 respondents)

Comments

We provide verbatim comments where appropriate to illustrate strength of feeling or personal experience.

Symptoms of Long COVID

Long COVID is a term to describe the effects of COVID-19 that continue for weeks or months beyond the initial illness. Respondents reflected on their own experiences and the experiences of their friends, family and work colleagues who have been living with the symptoms associated with long COVID. Common long COVID symptoms include extreme tiredness, chest pain, problems with memory and concentration, dizziness, joint pain depression and anxiety.

“My daughter had Covid before Christmas 2020 and still has aches and pains and tiredness.”

“My wife can no longer complete tasks without having to rest and recover from excessive breathing problems and this is also having a direct impact on her mental health issues, knowing she can no longer complete tasks without causing her to worry about possibly putting pressure on her heart and lungs.”

“I know a few people who have been off work for over a year due to ongoing symptoms and they need to be recognised.”

Similar Conditions

Some respondents made direct comparisons of long COVID with conditions such as fibromyalgia, Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), which have similar symptoms.

“I have ME and Fibromyalgia. They are very similar if not the same disability. We have been suffering in pain, with memory loss, and plenty of other symptoms for too long. So yes, it should be considered a disability. It has changed our lives dreadfully and nobody has been accepting of this for decades.”

“Anyone could suffer with symptoms of long Covid which can and will manifest in many forms with little evidentiary process like fibromyalgia or Chronic Fatigue Syndrome (CFS). Both took long enough to be taken seriously as defined eligible conditions, while many people suffered both medical and financial strains due to fact the conditions were not recognised. This only exacerbated the conditions as well as bringing in other debilitating long-term conditions like stress and mental health problems.”

“If you look at a lot of the symptoms long COVID sufferers have, you’ll find a lot of them are very similar to those that fibromyalgia sufferers experience.”

“As someone with ME/CFS I think that what actually needs to be done is a thorough study into whether long COVID is in fact ME/CFS. It is already being discussed and has most (if not all) of the same symptoms, however, doctors are currently dancing around telling patients that they could have ME/CFS or even that they have a long-term condition.”

“What people call long COVID is ME and already recognised as a disability and cause of death. What is needed is a recognition by the medical profession of this.”

The Equality Act 2010

The Equality Act 2010 defines disability as a “physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities”. A long-term effect means something that has affected you or is likely to affect you for at least a year. Based on this definition, the majority of respondents (89%) believed that long COVID should be classified as a disability.

“I have suffered side effects since I had COVID, and this was more than 12 months ago. Therefore, under the Equality Act 2010, I believe I have a disability and that this disability has lasted more than a year.”

“The psychological effects will be long lasting also. Suddenly missing out on sports and hobbies as well as work cannot be underestimated. There should be no doubt long Covid should be considered a disability under the Equality Act 2010 to support those suffering through the stages to recovery.”

“Long Covid should clearly be recognised as a long-term condition and a disability as defined in the Equality Act due to the fact it can be debilitating and should be added to the list as any other conditions like fibromyalgia or mental ill health.”

“Some people say it shouldn’t be counted as a disability because it may yet go away as we don’t yet have all the data. That is a bunch of hooey -temporary disabilities need protection just as much as permanent ones. And we’re not even sure long Covid is temporary yet; it may in fact be permanent.”

“Life changing debilitating effects like breathlessness and fatigue should definitely be covered under the Equality Act 2010.”

Some respondents believed that greater clarity is needed within the Equality Act 2010 to ensure that there is a unified approach in place when defining long-term conditions that fluctuate. One respondent stated that long-COVID will affect people in different ways with symptoms being more long-term or severe for some than others.

“It’s a disability in that it’s long term but as someone who has long COVID I’m also aware it affects everyone in different ways so might be quite hard to define.”

“I have answered yes, however like most conditions it is a disability if it impacts on your life as defined under the Equality Act. This highlights the main issue around understanding the definition – this should be simpler, then there would be no need to ‘name’ specific conditions. Acknowledge those lives with conditions that are hidden, that can fluctuate, causing pain, fatigue, memory problems etc.”

“I believe those suffering with severe debilitating symptoms should be assessed as having post viral complications resulting in chronic symptoms of a severely debilitating nature. I do not believe that long COVID-19 should be singled out for a special diagnosis.”

“I believe the alternative would be for the government to bring in an intermediary criteria of short-term disability by where it has a severe effect on a person’s day-to-day life and activities but is more in the short-term (less than one year or perhaps 18 months). We must be very careful that we do not dilute equality for disabled people that we have fought for many years to attain.”

Employment Protections

By classifying long COVID as a disability as defined under the Equality Act 2010, this will give workers extra protections to ensure employers cannot legally discriminate against them. It would also put a duty on employers to make reasonable adjustments that remove, reduce or prevent any disadvantages workers with long COVID face. A portion of respondents reflected on how they or people they know have been treated by employers when dealing with the symptoms associated with long COVID.

“My nephew is suffering long COVID and initially received discrimination via his work. It was only once the union became involved, they backed off.”

“I am thankful that although I have long COVID I am still able to work. However, there have been times that I thought I would not be up to the task and risk losing my job. It genuinely leaves you living in fear, which is why, with adequate assessment should be considered a disability.”

“I myself have long COVID. I had been looking to retire after 21 years. Now since the pandemic my work has changed the rules for early retirement. Occupational Health and my GP state I am not fit for work due to breathing problems, high blood pressure and several other issues. However, my employer states that I don’t fit the criteria for ill health retirement. I don’t think this is a very fair way to be treated.”

“My brother had COVID and is now suffering long COVID and the effects are devastating. He gets no income from his work due to the nature of the job. I definitely think it should be added to disability list to give greater protections.”

“People who have caught COVID while being in the workplace, like emergency services, NHS staff, and some other essential workers, should receive this, but where does it end? I think this issue needs careful consideration.”

Benefits

Some respondents reflected on the potential impact that long COVID will have on people who are claiming social security benefits and grants.

“I have huge and extreme sympathy for people who have had or have long COVID, but with the massive numbers of people who have this, allowing everyone to claim may have adverse effects on other people or the welfare system.”

“I feel that people with long COVID should be classed as disabled but based on my experience of trying to claim Personal Independence Payment (PIP), I very much doubt it that they will get anything even with proof.”

“I think the diagnosis of long Covid could be abused by those trying to claim disability and should be carefully monitored.”

Research

It was suggested by a few respondents that greater research is needed into the long-term impact of symptoms associated with COVID-19. In May 2021 it was announced that a major research study had been launched by the University of Glasgow, in collaboration with Public Health Scotland and NHS Scotland. It is hoped that the COVID in Scotland Study (CISS) will be able to identify how many people continue to be unwell following COVID-19 in Scotland, their symptoms and how it affects their lives. More details about the study can be found at: www.covidinscotstudy.scot

“There needs to be research done over the next few years, to find out more about the long-term effects.”

“Hopefully our understanding of long COVID will increase over the next few months which will give us a better understanding of where this issue is going. I think it is extremely difficult to make decisions on this just now as it is all relatively new and unfortunately ongoing.”

“I don’t think we know enough about it, what causes it, how it should be best treated. I think we should be funding research into methods of treatment, diagnosis and therapy, and then using the basis of these outcomes to inform the answer to this question.”

“Classifying long COVID may also promote further research into the condition, for which the science behind it is limited.”

Conclusion

The majority of respondents agreed that long COVID should be considered a disability as defined under the Equality Act 2010 given the long-term nature of the condition. Respondents reflected on the symptoms associated with long COVID and comparisons were made with similar conditions such as fibromyalgia. By being recognised as a disability, this will give employees greater protections to counter workplace discrimination. Further research is being conducted into long COVID which will assist with identifying the appropriate support mechanisms and how best to maximise recovery and quality of life.