#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.

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

OTalk 21st July 2020 – Improving BAME Representation in OT – #OTalk Diversity in OT Series (UK Focus)

With the #BlackLivesMatter movement sending ripples around the world on top of the #COVID-19 pandemic, efforts to adjust to the ‘new normal’ are underway and the #OccupationalTherapy profession is no exception. Over the years there has been repeating and intermittent awareness of the need to increase inclusive representation within the profession. Talk needs to be followed by action, and more needs to be done in order to lead to sustainable change. We need to address the systems and processes that make real lasting change difficult. It is not just about making people who don’t usually represent the typical presentation of an #occupational therapist, fit the mould, but about embracing the diversity and strengths that widening access and participation has to offer our profession, and more importantly the people we serve. Moving forward we need to continue to build alliances within the professional membership, regardless of skin colour and ethnicity, to have a depth of impact in change. We can do this as a profession with the help of local activity, diverse local champions, diverse local leaders and @theRCOT.

This #OTalk presents an opportunity to share our thoughts on this subject, in light of the recent #BlackLivesMatter events and the public health report highlighting that #BAME (Black Asian Minority Ethnic) communities are disproportionately affected by the COVID-19 pandemic. We would like to emphasise (and for the RCOT to take note) that focus on the BAME community should be regularly reviewed and discussed. This will keep the subject an explicitly ever present agenda for the profession in order to challenge and change structural based inequality. We also acknowledge that while the term BAME can be problematic, it can be helpful for exploring issues of representation. If in doubt ask the person their preferred term of reference.

This discussion on occupational therapy and UK-based BAME communities is part of an #OTalk series on topics of diversity. Other topics to be explored later include: Disability (including Neurodiversity), LGBTQIA+ and Gender Issues.

Some preliminary groundwork in preparation for this series is encouraged:

  • Look Deep. Acknowledge any privileges you may have. This resource on Privilege and Intersectionality may help: https://guides.rider.edu/privilege
  • Come to the chats with an open mind and heart and be prepared to feel uncomfortable – it is through discomfort that we can begin to make the necessary changes.
  • We need to unite to be actively against (anti) any forms of prejudice / oppression.
  • As always, respect each others’ views and acknowledge that there will undoubtedly be differences of opinion.
  • Develop an awareness of microaggressions and be mindful of how they may impact the colleagues you are interacting with on this topic: https://www.vox.com/2015/2/16/8031073/what-are-microaggressions
  • Accept that you will make mistakes and if these are pointed out, reflect on them and make the necessary changes.
  • Be clear about the differences between Inequality, Equality, Equity, and Justice. Check out this graphic created by @lunchbreath based on Shel Silverstein’s The Giving Tree.

Questions for the #OTalk chat will be as follows:

1 A) How ethnically diverse do you perceive our profession to be now? B) Has this changed over the course of your time as an OT? (Q Hosted by @Occ4LifeLtd)

2 A) Why would we want to encourage more people from BAME backgrounds to enter the profession? B) Does the OT staff group in your area represent the population you serve? (Q Hosted by @sherriikapp)

3 A) What racial / cultural discrimination have you experienced, seen or even perpetrated (even unconsciously)? B) What did you do about it? (Q Hosted by @KwakuOT)

4 A) What barriers do BAME occupational therapists face for progression into roles in leadership, academia and research? Please refer to the list of questions prepared by @HannahtheOT https://twitter.com/HannahtheOT/status/1267852336443150341 (How many Black lecturers / placement educators / managers have you had? Can you name 10 Black OTs you’ve worked with throughout your career? Can you name 10 white OTs? Name an OT theory, model or standardised assessment developed by a Black OT? How many articles/books have you read that were written by a Black OT?) (Q Hosted by @MwelaSihle)

5 A) What responsibility do you / will you take for exploring and educating yourself on issues of race and culture? B) What is one change you can make tomorrow? (Q Hosted by @LecturerMish)

Some useful resources:

*Will COVID-19 be a watershed moment for health inequalities: https://www.health.org.uk/publications/long-reads/will-covid-19-be-a-watershed-moment-for-health-inequalities

*AHP Leaders Podcast: Changing the Culture of Conversations (featuring AHP leaders from across the UK) https://www.youtube.com/channel/UCb722uXf9XJpegA_d-ApBUg

*The OT & Chill @ot_chill podcast, Episode 11 – L . O . V . E – Let’s Talk About Race #BLACKLIVESMATTER: https://open.spotify.com/episode/4sPh0qghwAiozaXLSM0re2

Akala deconstructs race, class, and Britain’s modern myths | Unfiltered with James O’Brien #32 https://www.youtube.com/watch?v=atfVUgyEIOI

Dr Karen Whalley Hammell WFOT Congress 2018 keynote ‘Building globally relevant occupational therapy from the strength of our diversity’ https://www.youtube.com/watch?v=9WipUPXx_Kk&t=7s

*George Floyd, Minneapolis Protests, Ahmaud Arbery & Amy Cooper | The Daily Social Distancing Show https://www.youtube.com/watch?v=v4amCfVbA_c

Hey White Therapist! Here’s where we start! https://courses.clearlyclinical.com/courses/free-ceu-racial-awareness

Why I am no Longer Talking to White People About Race by Renni Eddo Lodge: https://www.theguardian.com/world/2017/may/30/why-im-no-longer-talking-to-white-people-about-race (this is the preview article for the book)

Guidance for white allies who are trying to help https://ladders4action.org/news-blogs-videos/blog/do-no-harm/

Why “I’m not racist” is only half the story by Robin DiAngelo https://www.youtube.com/watch?v=kzLT54QjclA (a good summary of her book ‘White Fragility’)

A few real life scenarios to get you thinking:

In one occupational therapist’s work place it was identified that approximately 50% of inmates in a prison setting are from BAME backgrounds, with only 10% accessing occupational therapy services. Many reported discomfort in accessing services as they felt that the staff body was not representative of their backgrounds and lacked understanding of where they were coming from.

A Black occupational therapist received comments from a supervisor which suggested that they were perceived as lazy and uneducated. This Black colleague felt they had to work ten times as hard as white counterparts and also sees white colleagues get away with things they are reprimanded for.

A white Muslim occupational therapist who wears a hijab went to an interview and saw visible shock on the interviewer’s face. Feedback suggests that she couldn’t have answered the questions differently but she wasn’t offered the job.

A Black student turns up to a university admissions interview wearing jeans – they demonstrate more knowledge and insight than a white student who comes wearing a suit or smart attire. Which applicant gets awarded a place on the programme?

This #OTalk session and blogpost was made possible through the contributions of: Sihle Mwela @MwelaSihle Kwaku Agyemang @KwakuOT Jo Bresi-Ando @otStones Musharrat Ahmed-Landeryou @LecturerMish Elaine Rutherford @Cariad_OT Jou Yin, Teoh @teohjouyin Grace Chikelu Amamilo (not on Twitter) Kirsty Stanley @Occ4LifeLtd or @kirstyes Somia Jan @SomiaOT Carolyn Connage @CarolynOT Nichole Yam @nicholeyam Ed Sum @musedNeuroOT Sophia Awan @Sophia OT Yasmin Anisuddin Ward @Yazz_OT Geraldine Kinkead-Richards @GeriLKR Hannah Daisy @HannahtheOT Simone Welch @Simzy_x Ally Plusii @Ally56642911 Sheri Braimah @sheriefeb

One change our group thought was that RCOT could easily introduce is to appoint an Equality and Diversity Officer dedicated to organising research, study, networking and publicity events, and for influencing policy. A diversity mentorship / support scheme was also suggested to provide opportunities for people to discuss common issues. It would also be useful to have some dedicated webpage resources similar to those on the CSP website – https://www.csp.org.uk/workplace/equality-diversity. Do keep informed on the RCOT progress following the RCOT BAME Big Conversation – a summary of which will be posted on their new Equality, Diversity and Inclusion pages here – https://www.rcot.co.uk/equality-diversity-and-inclusion

Some immediate actions you can take:

Vote for Dr Kee Hean, Lim @lim_hean to be member of the RCOT Council. He is the sole candidate to represent the BAME population and has a long, consistent track record of enabling equitable student recruitment and retention at Brunel University London. The Brunel University London student body has 30-50% BAME representation thanks to the efforts of Kee Hean and his fellow admissions tutor Dr Ayana Ifekoya. The Brunel University London occupational therapy team have a tweet thread documenting their recent efforts contributing towards Racial and Cultural Equity: https://twitter.com/OTatBrunel/status/1281145935502942209

Please consider answering the call for stories, poems, comics, etc for an eBook “We Are OT: a brief history and personal accounts of diversity in the profession of occupational therapy within the UK” to be published on World Occupational Therapy Day 2020. https://occupation4life.co.uk/2020/06/05/we-are-ot/