Supporting patients with long COVID return to work, 2021, Madan, Briggs and Chew-Graham

It is actually quite sad to read the experiences of Long-Covid patients. Some are absolutely unable to return to work, they know that, and struggle to understand what they must do to secure benefits. (Some felt that the government should extend unemployment benefits, but this is bad advice, as it pays next to nothing). Others have been pushed back to work, and are walking zombies, literally. Brain fog, shortness of breath, exhaustion, some on oxygen. One explained her situation and i had to tell her that maybe her current symptoms were not compatible with working at all. Patients don’t know that, and i suspect that physicians do not know the extent of the disability, are not used to the issues, and as we know it, not keen to start any kind of medico-legal paperwork.

 

An aside, this just reminded me of that nightmare period leading up to finishing work, it was a period of not knowing whether I would get any pension, whether I would be able to afford continuing living my own home or if I would end up having to move in with family at the other end of the country. This was a number of years post onset, and a number of years after having reduced to part time working.

Some of this uncertainty reflected my lack of knowledge what was possible, what the system is, but most of the uncertainty was around not knowing how the various systems will respond to ME (or Long Covid), or indeed if they would recognise it at all in your case.

An ideal system for the specific needs of our condition would allow much freer movement between working and not working and between either to working reduced hours. And it would not be a system with such a high energy costs in achieving and sustaining pensions/benefits. I feel a system that would allow people to withdraw from work sooner, but be able to return to part time work more easily, and yet again withdraw from work if necessary, according to current health needs might end up with better health outcomes and people working more overall.

This paper draws on an ideological assumption that working is good, not working is bad, whereas for some people with Long Covid not working will be inevitable, and the fight to continuing full time work may actually lead to worse health outcomes. There is the possibility that encouraging people to stop work sooner, with mechanisms for future part time working or phased return to work may produce better long term outcomes.

We need a system that recognises this may be a life long condition and considers setting up options for the decades ahead, not just answering the question is it back to full time work or deciding never to work again in the next few months.

[added - such flexibility may be impossible to achieve within our current adversarial benefits systems]

 

My ill health retirement was some six years after diagnosis, and a number of years working part time, but also I was at the point where it was a choice between dismissal due to poor attendance or ill health retirement.

I still wonder though if from the start it was explained that I would likely never fully recover and I have to learn to live within my disability, if I would have not fought to return to premorbid activity levels and that overall my health might have ended up better. It was only over fifteen years or so into my ME that I really accepted that it was something I had to live with rather than an enemy to overcome.

People in work may be happier, fitter and better off, but again this is an association, rather demonstrated causality. Also this is no indication whether there is any impact in relation to the number of hours worked, is the self worth from five hours a week any different to that from 40 hours a week, or does it relate to what is done and how successful it is?

 

Thinking back to being a manager of a staff team, though I was perhaps lucky to manage people following a vocation, I saw my role as supporting people to do their job efficiently, but also to ensure they did not try to do too much.

In general I would say most people want to do work and often need to be guided to try less rather than more. I would be much more interested in a study that looked at how to ensure people did not try to go back to work too soon, and define the parameters that best help to avoid subsequent relapses.

 

I struggled with this too. I didn't have the complications of things like occupational pensions and ill-health retirements – in many jobs you know from the outset that if you live alone it'll be benefits and the end of paying a mortgage – but the main problem was the way ESA works.

I tried self-employment for a while after applying for redundancy (I knew I was likely to be sacked eventually because of my absence record). I found that I was able to do part-time work for maybe four months, but then would need another four to recover before I took on the next job. ESA was easy to navigate and I was put straight into the support group, but the problem was that if you go back to work and then have to stop for a break, you're back on the low 'assessment' rate for the first 13 weeks.

I just couldn't live on it. I didn't get enough from the Support for Mortgage Interest scheme to cover my modest mortgage payment so I had to top it up from my benefits, and I certainly couldn't keep up the professional subscriptions that I needed to do my job. Had I been allowed to go on and off the full ESA rate as and when needed, though, I'd probably have been able to work for several years longer.

In the end, it was the combination of taking a job on too soon because I was in debt, and having Disabled Facilities Grant work done on my house, that made the decision for me. I relapsed so badly that it was clear I needed to give up the house and the whole idea of working.

Now, as well as ESA, I have to claim council tax relief and housing benefit (the rent on my council house is exactly twice what my mortgage was), and I don't pay any tax into the system. When you think about what that costs, versus supporting chronically ill people to carry on working intermittently until retirement, it's obvious the whole system is ridiculously short-sighted.