#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


Kirsty

The Lives of #BAME OTs in 2020 explored via CMOP-E – Canadian Model of Occupational Performance and Engagement

I was invited by @LecturerMish to follow @DLafayette411‘s example and conceptualise BAME (Black and Minority Ethnic – UK Term) lives through an OT Model. Now being unable to stick to one tweet and not go overboard I’ve written this.

CMOP-E – Canadian Model of Occupational Performance and Engagement

This model describes the relationship and influences between these elements (Spirituality, Person, Occupation and Environment) which enables occupational performance. That is the ability of a person to perform occupations and daily engagements.

Analysis

Spirituality

Entered the profession to make a difference. Core identity as a member of a BAME community, family and the OT Profession. May feel incongruity with core values and beliefs and current situation.

Person

Cognitive – Mind can’t switch off, memories of past injustice mix with current situation. Need space to process. Emotional reasoning does not equal illogical reasoning.

Physical – Added concern about the increased physical health risk of covid to BAME populations. Bombarded by sensory images of racism.

Affective – Tired and worn down, frustrated and angry, upset by being asked to relive past trauma. May also be energised by the momentum for change. Additional anxiety created by pandemic.

Occupation

Self-Care – Possibly neglected or may not be being prioritised. Need to focus on mental health and safety.

Leisure – I would imagine fairly limited especially in terms of enjoyment. Constantly engaging in debate, reading news/social media. Favoured occupations may be sidelined.

Productivity – If still working the form of this will have changed placing extra demands on the person to work in different ways. Engagement in activism as a productive co-occupation.

Environment

Physical – Lockdown has removed access to certain parts of society where people may have sought support. May feel like there is no sanctuary as home has become where everything takes place.

Institutional (includes Economic, Legal, Political) Possibly feeling unheard by professional and regulatory bodies and workplaces. Wanting to affect change but having little power to do so within current structure. Finance may be difficult at the current time meaning less able to act on needs. Political environment is a mess compounded by Brexit – feels unsupportive. People also appear to be conflating politics with human rights. #BLM movement driving impetus for change.

Cultural – Conflicting cultures. Family, ethnicity, professional. May struggle with the professional or overarching British cultural attitude of stiff upper lip, keep calm and carry on. Focus is on connecting more to culture around ethnicity at present – that’s where attention is needed. Family may or may not support this depending on familial make-up – do family members share BAME backgrounds and understand concern?

Social – Usual support groups not as accessible, experiencing tone policing online from those who aren’t used to discussing racism. Seeking social support from allies to take on some of the load. Co-workers may not ‘get it’ especially where you are the lone OT from a BAME background.

In this model the environment is recognised as an underused resource and one that we need to capitalise on.

Not included in the model but I’d add in the Historical environment here too. This isn’t about what has just happened. It’s about all the things that have come before, all the personal microagressions, all the injustices. They aren’t blaming others for the past environment but it still impacts massively on the present and needs acknowledgement (and yes even if you/they weren’t alive when it all happened).

Synthesis and action

Spirituality

Reaffirm core belief of self and validation of the person as a their member of their BAME heritage. Help articulation of goals and desires for this period.

Person

Support strategies to manage stress and switch off. Prioritise sleep, nutrition etc. Person needs to be healthy to be most effective. Examine reasoning and explore thoughts and feelings. Risk assessment re physical well-being in workplaces. Recognise that everyone is individual. Some BAME OTs may not want to/feel able to engage at the moment and that is their right.

Occupation

Refocus on self care and restorative leisure occupations. Recognise that energy will need to be spent differently during this time though. Respect that activism is a valid occupation – explore different forms of activism. Possibly reduce demands of some occupational areas to compensate at this time, eg. Housework. That’s always the first thing to go with me at least!

Environment

Locate a safe space, a place or time where can just be themselves.

Find a social support network of like minded individuals to bounce ideas off and share the load. Include white allies to support this.

Challenge structural and institutional inequalities and demand change. Allies need to do this too. Professional body/workplace could take more responsibility for leading change allowing BAME OTs to contribute as able without feeling burdened.

As a white OT I have aimed to use the model to empathise with the lived experience of my BAME colleagues. Any mistakes are entirely my own. Do feel free to comment if you agree or disagree with anything I’ve written. I will listen.