#LongCovid – How Can Occupational Therapists Help?

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.

Women holding an umbrella against a yellow background - Quote says Occupation is the Umbrella that can Shelter YOU through Life's Storms.

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).

Take care


#TimetoTalk – Occupation Gives you Wings, Occupational Therapists can help you fly with them!

#TimetoTalk Logo - 2 birds by water bath

This year February 6th 2020 is #TimetoTalk day where we remind everyone that it’s ok to talk about Mental Health challenges, and appreciate that mental health is just as important as, and often intrinsically linked to, physical health.

On my personal blog I have spoken about this before but I think it’s also important to recognise that professionals can have challenges with their mental health too. And that you can work successfully with chronic mental health problems.

For one, I think my personal experience with depression certainly helps me empathise with others who are experiencing depressive symptoms linked to life issues, bereavement, a change in health, a new diagnosis or simply just because that’s how you feel.

For me, the main thing that keeps me going through these periods is maintaining my engagement in occupations (or activities) that are meaningful to me. But sometimes we can struggle to do this. That’s where an occupational therapist can come in. Sadly though thresholds for seeing occupational therapists within mental health services are quite high and often medication and talking therapies are the first port of call for people. Now, I have personally benefitted from both of these but I did feel that a slightly more practical approach in combination would have been helpful, and I did struggle to do this for myself even though I knew all the theory.

But these are the things that kept me going through my most recent period of depression.

1. Number one will come as no surprise if you know me. It was books and reading. But, during this last period of depression, I did find my concentration more limited and so I made more use of audiobooks than I ever had before. Adapting occupations, finding different ways to do them or switching to alternative occupations that give you the same experience is something an occupational therapist can help you do.

2. Number two was a completely new occupation to me. Part of my depression linked to my experience with fertility problems and I was mourning the loss of a mothering role. So I decided to foster (then adopt) two jack chis. Now whilst they aren’t a substitute for having children they definitely helped my recovery and in part filled that role. Prior to their arrival there were days that I spent entirely in bed. The dogs didn’t let me do that, and I’ve got the most exercise I have in a long taking them for regular walks. Occupational Therapists can help you fit new occupations into your daily routine, and even help with developing the skills to take on a new occupation in the first place.

Image of my two JackChis

3. Number three was activities with friends. Getting out of the house, socialising, talking to others about their lives, grabbing a coffee, seeing a musical, whatever it is you normally would do together.

It’s this last one that I want to talk about most today. The fact that, had I been seen off work doing some of these things that people would have felt I was “skiving”. And this is exactly why people struggle. Previously I would have cancelled all my plans outside of the house, and I would have felt worse for it. I needed to keep doing what I could do, without judgement. People didn’t see the behind the scenes, hours of crying, being unable to get dressed for days on end, barely eating. Having a trip booked was the thing that made me do these things. Being able to share these things on social media as I usually would (another meaningful occupation for me) were vital to living authentically.

And here is where I hope occupational therapists can have the most impact. Societally. By highlighting the importance of occupational engagement and balance to health and wellbeing. By helping employers and employees negotiate reasonable adjustments and phased returns to work that include time for exercise, socialising etc. To, like other countries, seriously consider a shortened working week, that has been shown to increase productivity and happiness. For it not to be seen as you are well enough for all of work or not well enough for any of it. The government want us to believe this is their goal to but the structures and cultures in workplaces are still not there to support it.

For me the decision to go independent was driven by the need for this flexibility. By understanding that early mornings are not the best time to get the best work out of me. I’m sure the independent route will come with its own challenges but hopefully understanding what I need and putting it in place won’t be one of them.

I am wary that I have focused on depression in this post, because that is my personal experience, but the same applies to people who experience anxiety, bipolar, personality disorders, schizophrenia, eating disorders, ADHD, Autism Spectrum Disorders etc etc. We all need to live life to live life.

Check out these particular pages for services that I offer that I think are relevant to this post.

AHP Health and Work Report

Disability Awareness Training/Accessibility Assessment

Living Life With…

Wellbeing & Occupational Balance Coaching

Work Smarter

Remember Occupation gives you wings and occupational therapists are the ones who can help you fly with them!