As the Covid-19 pandemic unfolded our team rapidly coalesced to anticipate, study and respond to the problem of Long Covid (LC). We now know LC is a syndrome of persistent physical, cognitive and/or psychological symptoms that continue after acute COVID-19 illness. There are an estimated one million individuals in the UK who are struggling with these symptoms.
Our clinical team highlighted the long-term effect of Middle East respiratory syndrome (MERS) and Severe acute respiratory syndrome (SARS) and thereby warned about problems to come with COVID-19. We then studied and published on the longer term effects of COVID-19. Using this data, the emerging wider literature and the experiences of our patients, we established that LC was affecting many adults who were typically young or in middle age, previously healthy and in demanding roles such as caring or employment.
The high prevalence and severity of impairment being experienced makes this an urgent health and economic problem, which we then developed an assessment and treatment service to respond to those needs.
We developed a unique, integrated rehabilitation pathway, through rapid collaborative leadership across Primary Care, two NHS Trusts, the University of Leeds, the CCG and the City Council. More than an ‘assessment clinic’, this service provides specialist, holistic multidisciplinary rehabilitation with medical support from three specialties and an in-house research programme. This pathway was established by August 2020. Patients’ experience, testimony and feedback have been central to our understanding of this novel condition and informed our development at all stages.
We have treated over 750 adults with LC whose daily functioning was severely impacted and not improving with GP-supported self-management..
The team identified a lack of resources to support with self-management and education about LC. We created a LC rehabilitation booklet and piloted this with a group of patients which received overwhelming positive feedback. This resource is available in multiple formats and languages. It has been shared nationally via the NHS England futures website and was used to support the development of the World Health Organisation Covid self-management and rehabilitation booklet.
We developed a scale for capturing long-term symptoms known as the COVID 19 Yorkshire Rehabilitation Scale that assesses symptom severity, functional disability and overall health state. This is literature’s first patient reported outcome measure for LC. This scale is now recommended by NHS England and NICE and available in an app format.
One of our latest treatment modalities is an interactive 10 week virtual symptom management group. As we continue to work closely with our research team our next steps is to further evaluate this course and patient outcomes and publish our findings.
Our most important impact is in supporting the recovery of those with LC in Leeds.
Clinical impact: Standardised outcome measures are assessed at baseline and discharge.
Our most recent evaluation reveals:
- 86% report an improvement in health related quality of life assessed through EQ5D
- 66% demonstrate improvement in the MRC breathlessness scale
- 82% report functional improvement through sit to stand test
- 85% have improved fatigue scores on the MFIS
National impact: Our service is considered a benchmark for the country and the staff mix has been recommended in NHS England guidance and NICE guidelines. Our C19-YRS scale is used in most Long COVID (LC) services as the only LC specific outcome measure.
International impact: WHO has appointed team member (Dr Sivan) as consultant to shape COVID-19 rehabilitation response in Europe.
Cost and savings
The service was established with funding of c.£500k from Leeds Commissioners, primarily for staffing costs, to provide rehabilitation for patients across the city of Leeds. A key aspect of this recovery is vocational. Keeping people in employment is associated with huge cost savings and is a crucial goal for many individuals.
LC is a multisystem syndrome with many symptoms which can be bewildering and worrying for patients. Thus, by acting as a point of co-ordination for an individual’s recovery we avoid unnecessary referrals to multiple specialties, thereby relieving pressure on secondary care and saving costs.
In additional to the clinical team (see references for details) our research team comprises a WTE researcher and a funded weekly session from our Associate Professor of Rehabilitation Medicine. This forward-thinking aspect of the funding has dramatically increased the impact and reach of our work for modest cost.
The main implication of the work has been in achieving great outcomes for patients with LC and supporting many people back into the work place. Our next steps is exploring how therapeutic interventions, such as breathing pattern disorder retraining, can address the dysautonomia symptoms that patients are suffering with. Based on our findings we will continue to expand on the national evidence base on effective treatment options in this new condition.
Our team is also now in collaboration with the University of Leeds launched the 3.4 million NIHR research project. The study aims to create a “gold standard” approach for the treatment of long covid. This research, titled LOCOMOTION will identify best practice in providing services, ensuring people are supported quickly and receive the right treatments from the right healthcare professionals, in their own home, through their GP or at specialist long covid clinics. It will investigate how many people are unable to work due to long covid and look at developing a vocational rehabilitation programme to support them back into employment.
Top three learning points
Article published on NIH: Parkin A, Davison J, Tarrant R, Ross D, Halpin S, Simms A, Salman R, Sivan M. A Multidisciplinary NHS COVID-19 Service to Manage Post-COVID-19 Syndrome in the Community. J Prim Care Community Health. 2021 Jan-Dec:A Multidisciplinary NHS COVID-19 Service to Manage Post-COVID-19 Syndrome in the Community - PubMed (nih.gov)
Phone app to support patients coping with long covid: https://www.leeds.ac.uk/news/article/4831/phone_app_to_support_patients_coping_with_long_covid
Long Covid rehab Booklet: http://flipbooks.leedsth.nhs.uk/LN005039.pdf
For further information about this work please contact Jenny Davison.