Long Covid: Plugging the gaps

Day-to-day, Covid-19 may no longer be on your radar. Masks have largely gone. Social distancing doesn't exist. People are clubbing, hugging, few are regularly testing. It might feel like a pandemic of the past. But not for people with Long-Covid.

In the most recent bulletin published by ONS (March 2023) there are an estimated 1.9 million people reporting long covid symptoms, 79 per cent of which reported an adverse effect on their life, with a higher prevalence in those working in health and social care.

As assistant psychologists working in the Humber and North Yorkshire (HNY) Resilience Hub, we see that the impact of Long-Covid persists. We believe that psychological support for those with Long-Covid is imperative and should continue. Long-Covid must not become background noise, lost in messages that 'the pandemic is over'.

Why psychology?

Long-Covid has entered the realms of pre-established chronic illness without a biological marker (although potential candidates have been identified). Fibromyalgia, chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) have long suffered from a lack of societal understanding leading to a sense of loneliness and isolation amongst these communities (Boulazreg & Rokach, 2020). This has been reflected in the stories of individuals who have accessed our service. Whether it be friends, family members or workplaces, Long-Covid sufferers are faced with a lack of understanding, social-isolation and even disbelief.

So, when met with a misunderstood illness which worsens quality of life, leaves you fatigued and strips you of your identity, how do you cope? Understandably, we look for a cure. Can rheumatology help? How about cardiology? Immunology? ENT? Somebody? Individuals with Long-Covid are shifted and shunted around departments, often with no concrete answers.

We witnessed the medical-oriented approach to Long-COVID at the recent National Health Service England Long-Covid National Workshop in Birmingham. Whilst psychological support was alluded to by some speakers, none of the presentations had this as their focus. This felt symbolic of the lip-service which is often paid to psychological support.

Psychological model of illness

The psychological model of illness perception proposed by Leventhal et al. (2003) provides a schema through which individuals can come to terms with and process the unpredictable and turbulent nature of Long-Covid. They encourage us to consider five domains: identity, cause, timeline, consequences, control/cure.

The identity of an illness is how we label it. Not just its name, but all the stigma associated with it. We work with some individuals who wish they could walk around with a big sign around their necks proclaiming, 'I have Long-Covid' – others would rather keep it hidden. We have seen the benefits of simply naming this reaction to the identity of Long-Covid and how this can help with validation and understanding how this is represented to others.

With Long-Covid, the cause may seem straightforward. It was… Covid-19. Some outstanding questions may be: why has this affected me long-term? Is there anything making this worse? Is something else going on? It can help to address these trickier questions and their associated emotional impact.

Timeline? Who knows what the timeline is for Long-Covid. This complete unknown adds to psychological distress, a sense of loss of control, and the instability of future plans. Our service users have reflected that an acceptance of this unknown timeline helps with an awareness of the present, taking each day at a time, and, in the process, focusing on what they can control.

Long-Covid has manifold profound consequences. Many of our service users describe the life-changing impact of this illness. People have lost their professions, had to change their relationships, and give up activities meaningful to them. These consequences are hard to accept but it is only through their acknowledgement that we can manage expectations.

Medical intervention can help ameliorate the symptoms of Long-Covid, but the condition does not currently have a cure, so having a sense of control over it may be difficult. It is a fluctuating illness, and its general trajectory is unknown due to its novelty. Whilst as psychologists we cannot change this, people can be supported to grow their lives around Long-Covid. We can help them find a sense of control within these new parameters.

Learning as we go

Since the inception of the HNY Resilience Hub in February 2021, our team has co-produced an extensive Long-Covid support pathway. This pathway has been designed to plug the gaps.

Its development has been informed by individuals with Long-Covid, combined with psychological theory. Comprising a peer-support group, key workers, a wellness recovery action plan, neurocognitive screening and rehabilitation, as well as an Acceptance and Commitment Therapy (ACT) for Long-Covid group, the pathway affords individuals a space for community, understanding and a sense of shared experience.

Plugging the gaps may not mean finding a cure, and as a psychological service, we are not searching for one. Instead, the gaps are filled through a re-analysis of values. For healthcare staff whose career may also be a vocation, Long-Covid may constitute a loss of identity. In order to fill the void left by this loss, we can use psychology to understand the core values underlying a vocation, a particular activity which is no longer possible, an old hobby. By finding these values we can help people to grow around their loss, exploring new avenues for value-expression, new purposes and new roles.

This continues to be a learning process. From the start, we have been informed by the people we support. Starting with a small focus group ending up two-years later with a fully developed, co-produced support pathway, we could not have done this without continued feedback, openness and participation from our clients.

It has been a privilege to develop a pathway which has been psychologically informed and evidence-based but also needs-driven. The pathway highlights the value of this as a model of care, learning from the bottom up. It is important to continue this collaborative conversation with our clients so that the pathway remains responsive to their needs rather than a model of care which is one-size-fits-all. We will continue to adapt and develop our pathway as our learning expands.       

We can't turn off the support tap now

NHSE has not continued funding for the staff resilience hubs. At the HNY Resilience Hub we are lucky enough to have secured local funding for this financial year. However, we cannot help but worry as to the longevity of our Long-Covid pathway. Funding for the Long-Covid clinics is also uncertain.

We have talked about responsiveness, but what about pro-activity? We cannot leave the pandemic, and by extension, Long-Covid in the past. Infections continue and, even though the immediate effects are less severe, the long-term impact of the illness will persist.

We are left with the question… if not us, who will be there to support these vulnerable individuals?