John is disabled, but he can’t access his pension. Why? Long Covid isn’t on the list | Lydia Richards

One of our members at the University and College Union (UCU), John*, used to enjoy Ironman contests, but now walking to his own bathroom is a feat of will. His resting heart rate was a remarkable 40 beats per minute (bpm), but now sitting up sees it hit 220bpm. He suffers from long Covid and his life has changed beyond measure. His partner is now his carer. He can’t work any more.

John is disabled. But his employer and pension scheme don’t know how to deal with him. Too sick to work, he has nevertheless been denied the ability to access his pension early – something that is offered for many other diseases and health conditions.

When Covid appeared I spent my time helping our members and employers keep working as safely as possible. Now, long Covid is the frontline of a new battle with unimaginative employers, risk-averse pension schemes and tick-box “People” departments. Long Covid sufferers clearly have a serious and unpredictable disease that prevents them from working as they used to. But they are often denied exceptions and the ability to negotiate new conditions that would allow them to continue working.

The problem is exemplified by a single sentence on the NHS website that reads: “Long Covid is a new condition which is still being studied.” Long Covid didn’t exist until early 2020. Doctors simply don’t know how long it will last for – there are no long-term studies because it hasn’t been around for enough time. In John’s case, as with many others, this is why the pension scheme refuses to allow his claim for ill health retirement.

Most employers haven’t yet understood long Covid’s impact. They are expecting staff to behave as with any other illness – get ill, get better, get back to work. One might get a phased return, but in nearly all my cases the employers count out four weeks and mark the date they expect people back to normal working hours and patterns.

But for many workers, long Covid has dealt a knockout blow well beyond the impact of the initial illness. Not every case is the same, but symptoms can range from occasional tiredness and brain fog to extreme debilitating heart palpitations and an inability to complete even the simplest of tasks without significant and limiting effort. For many the symptoms come and go, fluctuating with no rhyme or reason, leaving no ability to plan.

As the pandemic progressed and we realised it wasn’t going away, our attention at UCU turned to how our members and employers would live with it. Covid changed the way so many of us worked, we now understand people can work at least as effectively in non-traditional, flexible ways.

Working from home is possible. Remove the time, cost and stress of commuting, use technology effectively and we can make going to a workplace purposeful. The work gets done, people spend more time with their families and their productivity increases. This is not true for all jobs and all people, but it is true for enough people that choice should be more central to how we work.

This approach could be adapted and extended to long Covid as well. Most people want to work, especially those forced out by a disease through no fault of their own. They don’t want to be left behind because their employer wasn’t sophisticated enough to embrace different ways of working for different health needs.

Yet lifting the Covid restrictions has seen many employers revert to presenteeism and management observation, throwing away the benefits of flexibility for employee and employer. This is problematic for the whole workforce, but for people with long Covid it is devastating as pandemic-enforced flexibility was their lifeline to the world of work.

Four weeks is not long enough and some people will never be able to return to their old ways of working. This doesn’t justify throwing them on the scrapheap – they can remain valuable, knowledgable, loyal employees, while just working differently.

For many, returning to normal patterns might be possible if employers showed greater care and flexibility, allowing people to slow down and rest or work from home with regular breaks. Allow people to try out working patterns and see what works, understand some weeks might be different to others.

The country and employers can’t afford to lose staff by being too rigid on this. Management training needs to consider new ways to handle these cases. Employers need policies that address long Covid and ensure HR departments are able to support managers with challenging return-to-work cases. Sickness policies need to provide greater support to people whose financial situation may drive them back too early, exacerbating the situation for employer and employee.

And for seriously ill people such as John the only option is to retire through ill health and hope someone, somewhere, some time finds a cure. For those who will never be well enough to return to work, pension schemes need to understand that people don’t have the luxury of waiting five or 10 years for a diagnosis to emerge. Long Covid causes John’s debilitating symptoms – his doctor has testified to that fact. However, there is no specific organ damage, nothing that allows a medic to promise an employer the patient has exhausted their treatment and they won’t get better.

He has fallen through the gap where he is too ill to work but can’t get ill-health retirement, a decision which we are appealing. If you met John you would know why we won’t take no for an answer, he and his partner have already lost so much to this disease but there is every chance the pension scheme will refuse again. We will continue to fight for John, and we will continue to make the wider case: long Covid is here to stay and employers and pension schemes need to get their acts together.

* Names have been changed

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