Story of a long Covid battle

Dr Asad Khan is a respiratory consultant who retired on ill-health grounds due to Long Covid. He spoke to Solidarity about his experience and the ongoing battles sufferers face for recognition, justice and recovery.

I contracted Covid-19 during the second peak in November 2020. I was working on an acute Covid ward looking after 28 patients, all coughing and spluttering all day. I have absolutely no doubt that I got infected while working on the ward.

At work we were just given a loose-fitting fluid-resistant surgical mask (FRSM) and told it was sufficient. That was based on the idea promoted by Public Health England (PHE) that Covid-19 only spread by droplet transmission and that tight-fitting respirator masks (RPE) were only necessary when performing so-called “aerosol generating procedures” (AGP).

This was utter nonsense. Humans do not require special procedures to produce aerosols. The droplet-transmission-only line was an attempt to justify the rationing of RPE during the first wave when there was a national shortage.

By the second peak there was plenty of RPE, but PHE was extremely reluctant to admit its mistake and the droplet-only line continued. PHE continued to say that loose fitting masks were sufficient unless doing an AGP.

There was also a race element here. The standard disposable RPE is made for Caucasian face structures. Like many Black and Asian colleagues, I failed every fit test. I finally got my own re-useable RPE, but whenever I put it on local management accused me of frightening the nurses and misleading the juniors. After a while, it became one battle too far, and I complied with their request to wear the FRSM.

As I have said, I got infected. I had asked my employer to report my exposure under RIDDOR (Reporting of Injuries, Diseases and Dangerous Occurrences Regulations) and to be allowed access to the NHS’s Injury Allowance scheme. My employer was a large NHS Trust who had had three staff deaths and hundreds of employees with Long Covid, yet had not reported a single exposure under RIDDOR. They were reluctant to set a precedent.

Both the reporting and the injury allowance are considered on the basis of the balance of probability. I argued that I was infected during lockdown when I was only ever at home or at work. I was the first person in my household to get Covid-19, then my wife got it, and then my children.

It was much more likely that I was infected by my 28 Covid-positive patients on our poorly ventilated ward with inadequate PPE, than at home by my three symptom-free family members. But the Trust argued that it was possible one of the other three got it first, remained asymptomatic, passed it to me, then developed symptoms. Or that I had got it in a shop, even though we were shopping online. A formal panel sat for both cases, and both requests were denied.

Covid-19 weakens your immune system and makes you more susceptible to re-infection. From December 2021 to February 2024 I was reinfected six more times. In March 2023 occupational health agreed that I was fit to work and provided a plan for a phased return. My manager insisted that I should take up 80% of my previous work within four weeks. They would not consider reasonable adjustments. That was a breach of the Equalities Act 2010 and I won my grievance on this basis.

Part of the reason here was financial. Covid absence pay was protected until September 2022 then reverted to normal sick pay. In March 2023, it dropped to half-pay and in August 2023 it would stop all together. I was being prevented from starting work unless occupational health could reassure the department that I would be back to 80% duties within 4 weeks. I therefore alleged discrimination on grounds of disability.

My grievance hearing lasted until November 2023. I had good representation from the HCSA union and was able to draw on expert evidence from aerosol specialist David Osborn and others. It was a very tough process, but we won on RIDDOR and Injury Allowance, and I was allowed to attempt a phased return.

I returned to work in November 2023, and off the back of these battles I applied for and was granted the right to take NHS ill-health retirement. Under the scheme you have one year to access it.

Long Covid is very strange as you may find that you can work and undertake some physical or cognitive activity, but if you overdo it then you can get a delayed worsening of your symptoms, often without much warning.

I was 47 years old when I started my return to work and wanted to continue so I spent one year working a maximum of six hours a week. I found anything beyond that impossible.

I took the decision to access the ill health retirement in November 2024 in my last week of eligibility.

The official government figures are that 7.4% of NHS staff have been diagnosed with post-Covid conditions, but a recent study from King’s College London suggests the figure could be as much as 33.6%.

There is no doubt that there is widespread under-reporting. First, there can be a delay between acute Covid and the onset of long Covid symptoms. People can even be asymptomatic from Covid and still get long Covid.

Second, there is no typical picture of long Covid. It is a condition that affects every part of the body and different parts of the body to different levels. The symptoms are non-specific. They include fatigue, pain, cognitive slowing. Third, there is an element of “medical misogyny” as long Covid predominantly affects women.

There is a substantial literature that shows “female diseases” are not taken seriously. They receive less research and attention. We see this with ME/CFS, endometriosis, fibromyalgia and MS. The attitude is “we don’t know what this is, we don’t know what to do about it, therefore so it must be psychological”.

There has been a massive uptick in mental illness. That is often attributed to lockdown stress, but there were two brief lockdowns and there is no reason to think they would trigger mental health crisis. Some of the young children who are now long-term sick were not even in school at the times of the lockdowns.

What makes more sense is that living with long Covid is so miserable that of course people get anxious and depressed. There are some neuro-psychiatric conditions associated with long Covid such as mini-strokes. Also, the symptoms are so vague that they can often be mistaken for anxiety and depression. What we are seeing with these statistics is the tip of the iceberg.

long Covid is a vascular illness and leads to increased risk of heart attack, stroke, pulmonary embolism, Parkinson's disease, diabetes, renal impairment, high cholesterol and such like.

Research into treatments has been extremely poor. We saw during the high points of the pandemic how fast medical research can move with the vaccines. But research into long Covid treatments is almost non-existent.

There just isn’t the will or the funding to do the research. Government and to a large extent, the public, don’t want to engage with it and want us to believe it's all over. In the USA, National Institute for Health funding for long Covid research has been disrupted.

One theory about the underlying pathology of long Covid is that the residual virus or viral fragments remain in certain cells of the body. Yet, five years since the start of the pandemic and there have been no studies looking at the effect of treating long Covid with long-term anti-virals. There is one study of anti-viral treatments led by Professor Mark Faghy from the University of Derby, but the funding for the trial was only sufficient for two weeks.

There are low-risk treatments that can help. For instance, there are a cluster of symptoms that look like allergic reactions and some people benefit from antihistamines. Covid is associated with clotting problems, and long Covid makes the blood thick, so some people may benefit from anticoagulants- however these are not without risk and as there are no clinical trials yet, few physicians are willing to confidently prescribe them.

One of the most debilitating long Covid symptoms is Postural Orthostatic Tachycardia Syndrome (POTS). There are simple treatments for POTS, but there is not a single public POTS clinic in the northwest so patients have to go private.

The lack of research and hence evidence means that doctors are reluctant to prescribe and treatments generally are not available on the NHS. Many people have given up going to their doctors and long Covid services have been decommissioned, so there is nothing to refer to anyway. Often when long Covid sufferers do ask for help, all they are offered is talking therapy.

For other conditions it is accepted practice to prescribe low-risk treatments that work to alleviate symptoms, even if we do not fully understand why. But long Covid services have been slaves to the guidelines. Many people with long Covid have a lower quality of life than many cancer patients.

The government needs to acknowledge that its response to the pandemic, from the initial infection control measures to the subsequent treatment of long Covid sufferers, has been a catastrophe. They knew it was airborne very early on in the pandemic but downgraded the PPE requirements because they hadn’t stocked up. Later, when they had sufficient PPE, nobody wanted to admit that they got it wrong. We are still suffering with poorly ventilated hospitals and workplaces, and no better protected against airborne infection than in 2020.

Millions of people are suffering post-Covid conditions and as the risks of long Covid increase with each re-infection, it is likely that numbers will continue to rise. This will continue until we have effective treatments and this requires the resourcing of research.

The government should be monitoring wastewater so that it can identify spikes in Covid infection rates and put in place appropriate control measures such as mask wearing where necessary. It should be insisting that workplaces in general and hospitals and care homes in particular are adequately ventilated. Workers need adequate sick pay so they can isolate and get longer term support when they need it. This is overwhelmingly an occupational disease and needs to be recognised as such.

There is a group of healthcare workers who are pursuing a compensation claim against the NHS for its failure to implement adequate infection control measures.