Working Alongside People with Long Covid: a Psychologist’s Learning

Today’s guest post is written by Dr Richard Pione, a clinical psychologist, CBT therapist and former Psychological Wellbeing Practitioner. Richard has worked within several different clinical health psychology settings, with the most recent being a short-term post within a Long COVID MDT. Richard shares what he has found to be helpful when working with people experiencing symptoms of Long COVID. 

Context:

I am not an expert in Long COVID. The below are just things that I have found helpful to bear in mind when working with people experiencing Long COVID symptoms.

Beginners mind:

Even if you have developed Long COVID symptoms yourself (or have spoken to others that have it), do not assume you know what the person has been experiencing. There has been great variation in regards to the type and degree of symptoms that people with Long COVID are experiencing so far. Be curious, non-judgemental and validating.

Expectations?

Has the person been asked to see you as no one else can make sense of their experiences? Do they think they have been sent to you as they believe other professionals consider Long COVID to be a psychological phenomenon? Are there expectations that you as a Health Care Professional will cure their Long COVID?

Hold in Mind

NICE guidelines (2020)

These guidelines state that Long COVID is present when a person’s COVID-19 symptoms last for 4+ weeks.

Myalgic Encephalomyelitus/ Chronic Fatigue Syndrome (ME/CFS) context

There seems to be a great deal of crossover between the symptoms of ME/CFS and that of some types of Long COVID. There is evidence to suggest that when working with ME/CFS that the graded exercise approach has been shown to be ineffective and, in many cases, lead to physical deterioration (The ME Association, 2020). So be cautious in advising how much exercise/activity a person with Long COVID should partake in. NHS guidelines for Long COVID do recommend 1 walk per day; Physios for ME recommend that an assessment of post exertional malaise (PEM) is carried out before any activity is suggested, and that physical activity is well paced and informed by the assessment of PEM.

Historically, there is also an understandable degree of mistrust between some with ME/CFS and some of the psychology community. Some CBT therapists/ psychologists it was felt, implied that ME/CFS came along with a set of irrational or incorrect negative thoughts that could be ‘corrected’ via cognitive restructuring. Or indeed, believed that ME/ CFS could be cured through a mixture of cognitive restructuring and behavioural activation/ activity scheduling and Graded Exercise Therapy. I’m mentioning this, as because so much is unknown about Long COVID at this time, it’s possible that these symptoms are here for the long term, and that perhaps, our role as clinicians are to help people to adjust/ manage the symptoms as best as they can (i.e. pacing, ACT-like intervention). For more information, see Shepherd (2020). It’s also possible, that those with Long COVID symptoms could understandably mistrust or be suspicious of psychological intervention given what has happened in the past to those with ME/ CFS.

ME Action advice to people with fatigue in Long COVID from https://www.meaction.net/stoprestpace/

Does the person want therapeutic intervention?

Now may or may not be the right time regardless of what it is they are experiencing. Offer them a safe containing experience of listening to their difficulty. Think collaboratively whether now is the right time to offer a psychological intervention.

When Assessing Consider:

Offering an opportunity for their story to be told

There is often great variation in whether patients of physical health services are able to have time to be able to talk through what has happened to them. Often, the pressures of NHS working dictate to medical professionals to see patients in as short a time as possible. The person may not have had an opportunity to talk through what has happened to them from start to finish. Offering this may feel strange to the person you’re seeing, but equally could be a valuable opportunity to achieve several aims.

  1. It offers the person an opportunity to tell their story from beginning to end. It also highlights whether there is any missing information in their story (frequent occurrence in admitted patients in Critical Care/ ITU).
  2. It gives the person an opportunity to have an HCP to bear witness to their story from start to finish.
  3. It gives the clinician an opportunity to note any areas of their story which may be causing the person distress (i.e. traumatic incidences), and opportunities to extend empathy, and demonstrate active listening skills by feeding back their understanding of the person’s journey.

Validate, validate, validate

Dialectical Behavioural Therapy breaks down six different ways in which we can validate a person’s experience. I won’t go into them here, but be mindful of the different ways that these individuals may have been invalidated on their way to see you. By friends and family who ‘don’t believe in Long COVID’. The medical professionals that told them their experience is attributed to anxiety. People they may know/ or those on social media claiming COVID is a hoax. People in society who say that enough is enough with respect to COVID precautions on PPE and that we all need to just ‘get on with it’. Invalidation can hurt. It’s possible that you could be the first professional/ person to take their concerns seriously.

Timeline

This can be useful in charting the time frame of contracting COVID-19 and the onset of Long COVID (especially if there are memory difficulties). If the person was admitted, then ideally, the person should have been offered  an opportunity to talk with a medical member of staff to debrief what happened to them in hospital, or been offered a written account for them to take home (BPS, 2020; p. 4). This could be particularly useful if PTSD symptoms are present.

Genogram

COVID-19 or Long COVID rarely affects the individual alone. It impacts on the system around them. Completing a genogram to have an understanding of who else has been affected could be useful. Has the person’s partner or children needed to take up additional responsibilities around the house for example? Finding out about the quality of relationships the person has will be useful in knowing more about those close to them, evaluating their social resources and assessing risk.

Loss

People with long COVID may have lost aspects of the self which were previously valued. For instance, their identity as a parent, as a worker or a partner. For various reasons, they may not be able to do what they were previously able to do. This loss could be conflated with guilt (perceived burden on others). The loss may something physical (i.e. loss of breathlessness, physical functioning, energy). The person may also be grieving for friends or family who died after contracting COVID. Within the time limits of low intensity appointments a similar conversation can be opened around a bio-psycho-social model/diagram that acknowledges the range of changes and losses that someone with Long COVID might experience.

Trauma

Consider asking whether the person had been admitted with COVID prior to developing Long COVID. It has been widely reported that many COVID-19 inpatients witnessed fellow patients dying during their admission. The person may have been told they were going to die, or perhaps believed that they were going to die. They may have guilt at having survived and had the experience of hearing/ seeing others die. They may still hold the belief that they could die in the present moment. It is a common experience for inpatients to report extraordinarily vivid dreams. In some cases, these vivid dreams can be persecutory in nature. The person may have had trouble in differentiating between reality and dream-like states during their stay or even remembering back to that time. It is worth asking about dreams if they were an inpatient. Dreams can be normalised as a phenomenon that regular occurs to patients who have been admitted to critical care/ ITU.

https://www.bmj.com/content/370/bmj.m3026

Cognitive difficulties

Ask questions surrounding whether the person’s memory or ability to concentrate has changed in any way since they developed COVID. If possible, this is also a good question to a significant other to get more information on this. Be mindful of patients telling you that they have trouble remembering information, or frequently forget why they went into a room. During your sessions, you may want to listen out for occasions where perhaps, patients cannot remember what was spoken about the session before. If you are concerned about a person’s memory of concentration, speak to your supervisor about it, and consider a referral to the appropriate team in your area. Also be cognisant of how PTSD can often lead to difficulties in memory.

Risk

People with Long COVID can be experiencing some serious life-limiting difficulties. They may experience chronic pain or fatigue. Their relationships with others may have changed. They may feel like they have lost crucial valued aspects of their identity (as a parent, partner, employee etc). Thoughts to end life may in fact be a totally understandable and normal response to these circumstances. Do a thorough risk assessment and impart sources of support.

Bear in mind that as we learn more about Long COVID, we are hearing increasing numbers of people who recover; factually accurate information giving can be very encouraging, so stay up to date on the latest stats and information. You can also point to parallel communities for ME/CFS and chronic pain sufferers where patients have learned ways to accept and balance their loss of ability and identity with meaningful, valued, activities within the limitations imposed by changes in their health.

Asking for feedback

What has it been like for them to tell you their story today? Would they like to meet again? Identify whether you are the right person to speak with them about what has been happening for them.

When Planning an Intervention Consider:

Patient’s goals

What does the person want from their therapeutic intervention? Is it to work on intrusive thoughts relating to a trauma? Is it to manage the distress of having to adjust to a new body? Is it working and processing feelings of loss? Or has the patient identified a specific behavioural goal that they could be supported to achieve with Low Intensity interventions? Be led by the person and consider contacting the established IAPT LTC teams for any transferable learning from other health condition pathways.

Psychoeducation

Having information to hand about fatigue, pain, breathlessness and how these intersect with low mood, distress and anxiety could be helpful. The below links from ‘Your COVID Recovery’ could be useful:

Managing Fear & Anxiety

Managing your mood and coping with frustration

Memory & Concentration

Please check out the other links in this NHS England website that will be able to provide you with plenty of information relating to Long COVID.

https://www.yourcovidrecovery.nhs.uk/managing-the-effects/effects-on-your-mind/managing-fear-and-anxiety/

Pacing

Finding the balance between activity and rest. This may involve breaking down bigger tasks into smaller ones that are more achievable. This will be difficult in practice if the person is used to doing everyday activities with no difficulties. Framing this as a behavioural experiment in terms of wondering together how pacing/ breaking down bigger activities into smaller activities could impact energy levels (i.e. one week with no changes to their routine alternated with one week of pacing. Which week left them in better shape?). See guidance by the ME association (2020 p. 13) for further suggestions and the previous Not a Guru post about pacing (which was written in the wake of a COVID-like viral illness!).

https://notaguru.blog/2020/03/29/pacing-what-to-do-when-youre-worn-out/

Onward referral

Does the person require further support for any breathlessness/ fatigue other Long COVID symptoms? Research whether there is a Long COVID MDT in your region. Contact the person’s GP to find out more about this. Typically, within such an MDT there is a respiratory consultant, physiotherapist, occupational therapist and a clinical/ counselling psychologist. If chronic fatigue is the primary symptom there may be a local CFS/ME MDT in the region who can offer consultation and joined up working.

References:

Post COVID-19 Fatigue, Post / Long COVID-19 Syndromes and Post-COVID ME/ CFS. The ME Association. 2020.

Web link: https://meassociation.org.uk/wp-content/uploads/Post-Covid-Fatigue-Syndrome-and-MECFS-September-2020.pdf

Meeting the psychological needs of people recovering from severe coronavirus (COVID-19). (2020). The British Psychological Society.

Web link: https://www.bps.org.uk/sites/www.bps.org.uk/files/Policy/Policy%20-%20Files/Meeting%20the%20psychological%20needs%20of%20people%20recovering%20from%20severe%20coronavirus.pdf

COVID-19 rapid guideline: managing the long term effects of COVID-19. NICE.

Web link: https://www.nice.org.uk/guidance/ng188/resources/covid19-rapid-guideline-managing-the-longterm-effects-of-covid19-pdf-66142028400325


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