Long COVID: supporting people through the quagmire

Long COVID, the post-acute sequelae of SARS-CoV-2 infection, is seen in growing numbers of people and has been highlighted as the only illness to be initially identified by individuals coming together on social media.¹ Each reports a constellation of symptoms that are debilitating, persistent, and unexplained, often limiting day-to-day activities.² These include headaches, fatigue, breathlessness, mood changes, dizziness, insomnia, joint aches, and pain. While some are reported as persistent and others may be more ‘sporadic’, triggered by, for example, exercise, all such symptomology is underpinned by feelings of fear, uncertainty, anxiety, and depression, especially when many patients identify that their ‘quest to be seen and cared for’¹ by healthcare practitioners has failed.

While searches for causes, mechanisms, and treatments are underway, it is crucial that the patient narrative is understood across the healthcare environment, with urgent attention paid to supporting those with long COVID to manage and mitigate their symptoms, moving towards recovery. This poses challenges because symptoms vary between individuals, many of whom are at increased risk of developing a psychiatric disorder.³

In addition, our existing fragmented health and care environment, focused on symptoms and specialities, is not suitable for managing long COVID,⁴ not least as the collection of respiratory, neurological, gastrointestinal, and cardiac symptomology demands a range of specialist, secondary care-based support. Such care is becoming increasingly unlikely owing to the currently estimated 5.6 million patients in England alone awaiting hospital-based treatment.⁵

Guidance by the NHS and National Institute for Health and Care Excellence however, emphasises that an integrated, coordinated, and multidisciplinary health and social care approach is needed to reduce the impact of long COVID on the health and health inequalities of patients, families, friends, and carers. This will entail a systematic, individualised assessment that will inform a tailored package of support, with ongoing monitoring, review, and referral to appropriate expertise where necessary. To enable ease of access the package of support should be available online, supplemented by tailored literature in booklet form, and access to other online information and support resources likely to help them manage ongoing symptoms.

The first port of call for many people with long COVID is usually their GP, from whom they need belief in their symptoms, empathy, and understanding.⁶ Ongoing support by primary care professionals during recovery and rehabilitation is crucial, but this can be bolstered by other supportive measures to ameliorate the impact of presenting symptoms. While the ideal would be the GP ‘wrapping services’ around the patient, navigating and delivering appropriate referral pathways on behalf of the patient,⁷ it could be argued that such support will be unavailable given the pressures on primary care, the tsunami of patients with post-COVID, and the ongoing workforce challenges.

To recognise the need for holistic support and mitigate the existing suboptimal care for those with long COVID we are carrying out a randomised feasibility study to assess if the Optimal Health Programme (OHP, www.optimalhealth.org.au), an evidence-based psychosocial support programme that enables clinicians to guide and facilitate patient (and family/carer) self-management, can support symptom management. It works alongside the patient to identify and implement their own recovery goals (such as exercise, diet, and sleep) across five sessions plus a booster to achieve optimal patient self-management, and improve quality of life and wellbeing. Although originally developed for helping people with mental health issues, the OHP has been used successfully with a variety of other chronic conditions such as stroke and chronic kidney disease.

We hope that as we move patients with long COVID through the OHP, we will see positive changes in their symptomology to support their recovery. While we do not claim that this approach may be a panacea for all, it may be a useful adjunct to improving health and wellbeing in the long COVID population.