Against the backdrop of the COVID-19 pandemic, the service felt it was a huge honour to be recognised for the EPCA 2021 excellence in a time of crisis award, which greatly boosted the morale of the team.
Dr Toby Hillman, consultant respiratory physician in pleural medicine, writes on behalf of the UCLH post-COVID service.
The COVID-19 pandemic has proved to be perhaps the biggest health crisis that humanity has faced in the post-antibiotic era. Clinicians of all types – from the front door all the way through the hospital – were co-opted into the efforts to manage the tidal wave of critically ill patients and maintain services in ever more imaginative and thinly-spread ways, often going above the call of duty.
The University College London Hospitals NHS Foundation Trust (UCLH) post-COVID service started literally in the back of a van – borrowed from the Find and Treat team, which usually serves hard to reach populations, screening for TB.
The service was intended to be a short-term solution to the problem of following up those who had been critically ill in hospital with COVID-19 pneumonia – predominantly focused on ruling out significant residual respiratory disease, as we anticipated that this disease would cause lung fibrosis in a minority of the severely ill patient cohort.
'The sheer variety of symptoms, signs, and presentations was bewildering at first, and only through lengthy evening MDT discussions did a slightly clearer picture emerge.'
The reality turned out to be very different. While planning the service, we heard many anecdotes from colleagues in primary care about patients with persistent symptoms, and our own hospital had identified complications in a number of patients who were well enough to go home from the ED at their first presentation. As we saw more patients from both community and hospital settings, a much more complex picture emerged.
A bit like the blind men and the elephant, we were feeling our way around a clinical scenario that none of us had faced in the past. We fell back on our general medical training more than ever – even undergraduate physiology was recalled as we tried to explain our clinical findings.
The sheer variety of symptoms, signs, and presentations was bewildering at first, and only through lengthy evening MDT discussions did a slightly clearer picture emerge. Patients had got there first, and ‘long COVID’ was the term describing this new set of problems.
Without a textbook, established literature, described pathophysiological mechanism or pharmacopoeia, we were left with few tools. Instead of physician as holder of knowledge, and disseminator of diagnoses, we had to take a different approach.
As Sir William Osler told his students decades ago: ‘you must listen to the patient – they are telling you the diagnosis’. And so, it was here.
Clinical phenotypes did not sit tidily within any single specialty’s expertise, and it was imperative that we avoided committing the crime of Procrustes – a barbaric robber from Greek mythology, who ‘helped’ guests to fit his bed, either by lopping bits off or stretching them to fit. This cognitive bias is prevalent in medical diagnostic thinking, but in a new disease anything and nothing could be significant, so phenotypic pigeonholes simply didn’t exist.
Instead, we listened, noted, and explored the symptoms, and relied on discussion with colleagues to untangle the threads, making hypotheses, and bringing these thoughts to the next clinic.
It was only through the helpful input of colleagues across a huge range of specialties, academic disciplines, and professions – with our therapies team front and centre – that we could cope with this seemingly unfathomable illness.
The origin story of long-COVID brought huge challenge to patients and clinicians. Patients have experienced stigma, dismissive attitudes and rejection as they seek help. As clinicians, we felt an urgency to share learning with healthcare systems in real time, and relied heavily on the benefits of an electronic health record to collect data from day one regarding findings, outcomes and clinical need of this patient group.
We are grateful for the immense support of our organisation in allowing the service to develop around clinical need before funding and resource for services could be made clear.
Through working with partners, we have now evolved from a hospital-based clinic to an integrated post-COVID network with multi-professional and multispecialty input, which also embraces the crucial role of primary care in meeting the needs of patients with long COVID. We are also delighted to be involved in NIHR-funded research that we hope will throw more light on the best pathways of care and better treatments for our patients.
Winning this award is not only an honour, but also a validation. It represents external recognition that clinicians following their values – patient-focused listening, active learning, rigorous evaluation and improvement – can deliver excellence, even in a time of crisis.