Rightly so, there is growing attention being placed on what has been termed Long Covid, rather than just the mortality rate from contracting the virus.
Long Covid has been identified as a smorgasbord of symptoms experienced past the initial infection and not necessarily linked to the severity of the initial disease, or the age or relative health status of the individual. Both those hospitalised and those not are experiencing this debilitating effect on their everyday function with fatigue in particular being a key symptom, and 1 in 5 also experiencing mental health difficulties that people with chronic illness recognise as being as cyclical part of their experience. There has even been suggestions that Long Covid may be a combination of different syndromes https://www.bmj.com/content/371/bmj.m3981.
With the recent review of the NICE guidance to remove graded exercise therapy for ME/Chronic Fatigue Syndrome (https://meassociation.org.uk/2020/11/nice-press-statement-media-coverage-of-new-clinical-guideline-on-me-cfs/ ) this also poses questions for those who experience other fatigue related conditions such as Long Covid. The whole ‘if you push yourself you will get better’ view has long been considered harmful. Indeed a Long Covid support group that I’m in shows people describing ‘relapses’ and I believe as well as the underlying biological factors that will take time to unpick there’s an additional big additional driver behind them – the desire to ‘get back to normal’.
I’m someone who already has long term health conditions herself and who is seriously querying whether she too has Long Covid after spending January – and then the rest of the year coughing and exhausted with the worst exacerbation of asthma I’ve ever had, to the extent that I’m now on the shielding list. I also have 20 years as an Occupational Therapist – most recently working with people with Multiple Sclerosis – who also experience fatigue as well as a strikingly similar list of symptoms so I can see common pitfalls that people are falling into – and ways to help.
So, how can occupational therapists (OTs) help?
One of the biggest challenges that I can forsee is with people getting a diagnosis. As we know, early in the pandemic there was a lack of testing and it has been shown that people lose their immune antibody response so that previous infection may not be identified on testing. In fact, like me, many of us believe we may have had it before covid was ‘officially’ in the U.K.
The NHS has developed an online recovery tool – https://www.yourcovidrecovery.nhs.uk/ and there are plans to set up Long Covid clinics. But this all takes time, we are still in the midst of the acute phase of the pandemic and as many know rehabilitation is often seen as the poorer cousin of acute care. There will undoubtedly be postcode variations and I suspect the need to have a confirmed diagnosis will be a barrier to some. But after all the impact on your daily life IS REAL whether it was caused by Long Covid or not.
Occupational Therapists – especially those working independently – do not need you to have a confirmed diagnosis to work with you. Instead they will assess you as an individual taking into consideration your physical AND mental health as well as your personal life circumstances and look at what you need to do in your daily life.
OTs who specialises in fatigue management can help you better understand your triggers, but also determine what’s truly important to you. I personally don’t like to think of this as getting back to a ‘new normal’ but a refocusing. In fact fatigue management is a skill to learn and develop and one that we undoubtedly have to practice. I’ve just got some energy myself whilst on a course of steroids and have had a way too productive couple of days so taking a step back or at least acknowledging that I might need a couple of quieter days are now in my plan.
Another area that I think occupational therapists need to be leading on is advocacy and accessibility. I would love some positive societal shifts to come from this pandemic with these being a couple of suggestions.
Occupational Therapists to work directly with GPs in Primary Care. Helping get to the crux of people’s challenges and providing screening, early input and referral on to more specialist services as relevant.
The Department of Work and Pensions and employers doing much more work around accessibility of employment from things such as Universal Basic Income, to proper phased returns to work after illness, to truly flexible ways of working.
And yes as an Independent OT I do offer such services https://occupation4life.co.uk/longcovid-recognition-and-recovery/ although due to my own health needs I am currently only able to provide virtual services. I am offering a range of online group sessions or individual sessions as well as support for employees in retuning to work and also the perhaps inevitable expert witness work that will arise as a result of civil law claims.
You could also find an independent occupational therapist near you https://www.rcot.co.uk/about-occupational-therapy/find-occupational-therapist or speak to your GP/health team about if there are any relevant NHS services locally that you can access.
One key piece of advice though is to try and seek support sooner rather than later. It is much easier to manage early fatigue than to pick yourself up after burnout. And please be kind to yourselves. Don’t beat yourself up and expect to go back to “normal” – after all “normal” is subjective, changeable and being weird is much more fun.
Here’s a bonus energy measure tool for you (adapted from the FACETS Fatigue: Applying Cognitive behavioural and Energy effectiveness Techniques to life Style course).