Innovating in response to Long Covid

Here we celebrate two very different services that submitted work to the CSP innovations database on managing this exceptional demand.

The Office for National Statistics report an estimated 1.3 million people in private households in the UK (two per cent of the population) were experiencing self-reported Long Covid as of 6 December 2021. It is clear then that the need for Long Covid services and support remain as important as ever.

The Leeds Community Long Covid Rehabilitation Service and the Bexley and Greenwich CCG/ RespiriCare collaboration are both excellent examples of responsive, rapid service development in these uncertain times.

Data-driven early identification of an emerging problem

Early on in the pandemic, the Leeds Community Long Covid Rehabilitation Service effectively used research data on the long-term effects of previous pandemics, notably Middle Eastern Respiratory Syndrome (MERS) and Severe Acute Respiratory Syndrome (SARS) to predict an upcoming need. 

This investment in preparedness enabled the team to position themselves to collect early data on clinical demand. Combining this data, the emerging wider literature, and the experiences of their patients, the Leeds team established that Long Covid was affecting many adults who were typically young or in middle age, previously healthy and in demanding roles such as caring or employment. 

Being proactive in this early phase of the pandemic enabled the team to plan resources more effectively, developing an assessment and treatment service to respond to those identified needs.

Working together, the Leeds team led by Jenny Davison and Rachel Tarrant (clinical coordinators in Long Covid rehabilitation) 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. The service was set up with funding of £500,000 from Leeds commissioners, primarily for staffing costs, to provide rehabilitation for patients across the city. 

The Long Covid rehabilitation pathway was established by August 2020 to deliver holistic multidisciplinary rehabilitation with medical support from three specialties and an in-house research programme. Patient experience, testimony and feedback continue to be used to refine the pathway and inform development at all stages.

Zoe Fox and Diana Whiteside are both specialist physiotherapists in Long Covid rehabilitation and agree that by acting as a point of co-ordination for an individual’s recovery, the team was able to avoid unnecessary referrals to multiple specialties, thereby relieving pressure on secondary care and saving costs.

When the Leeds team submitted its work to the CSP Innovations in Physiotherapy database, they had treated more than 750 adults with Long Covid. The development of an information booklet received overwhelmingly positive feedback. The booklet was subsequently developed so that it is available in multiple formats and languages, and has been shared nationally via the NHS England Futures website. In addition, the resource has been used to support the development of the World Health Organisation Covid self-management and rehabilitation booklet.

Having started their story with data, the team was soon working to support the development of a scale for capturing long-term symptoms known as the Covid-19 Yorkshire Rehabilitation Scale (C19-YRS) that assesses symptom severity, functional disability and overall health state. This ongoing work has resulted in validation as a patient reported outcome measure for Long Covid. This scale is now recommended by NHS England and NICE and available in an app format.

The latest development for the team has been the creation of an interactive 10-week virtual symptom management group, which will be evaluated with the support of the research team. In additional to the clinical team, the Leeds service chose to actively invest in its research capabilities with a full-time researcher and a funded weekly session from an associate professor of rehabilitation medicine. This forward-planning has dramatically increased the impact and reach of the work of the service for modest cost.

Submitting to the Innovations in Physiotherapy database isn’t the end of the story for the Leeds Community Long Covid pathway. The team is now in collaboration with the University of Leeds in an NIHR research project. 

This research, entitled LOCOMOTION will identify best practice in providing services, ensuring people are supported quickly with the right treatments from the right 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.

Cross-organisation collaboration for digital delivery

Our second case study was submitted by members Julie Moore and Natalie Hilliard. They were both instrumental in the rapid development of an innovative digital group therapy breathing and energy management programme, designed to reduce symptoms of Long Covid.

Julie and Natalie are committee members of the special interest groups Breathing Pattern Disorders (BPD) and ‘Physio for ME’ (fatigue management). Together, they collaborated with RespiriCare (independent specialist respiratory physiotherapists) and three people experiencing Long Covid to create a live, virtual six-week breathing and energy management programme.  This home-based educational programme encourages good quality rest, energy management, sleep management, re-establishing efficient breathing and optimal nutrition and hydration which are essential for the recovery from Covid.

The service model was developed by RespiriCare and agreed through the Greenwich & Bexley respiratory network, a specialist multi-disciplinary network including respiratory consultants, specialist respiratory nurses and physiotherapists from the community respiratory teams, GP clinical leads and RespiriCare. A small pilot project was successful and funding was made available for 30 patients per borough in January 2021. Through ongoing regular contact with all stakeholders, including the feedback of clinical activity and patient outcomes, further money was made available enabling the service to continue.

The service was accessible to people who were continuing to suffer with symptoms of fatigue and/or breathlessness more than 12 weeks following Covid infection. Mindful of Post Exertional Symptom Exacerbation, questionnaires were emailed to the patient ahead of the clinical assessment. This ensured symptoms of cognitive fatigue were not exacerbated. The assessment, which was conducted by one of the specialist respiratory physiotherapists, provided a platform for the patient to explain the complexity of their symptoms whilst being in the safe environment of their home. Using a virtual delivery platform enabled the service to continue throughout periods of lockdown. 

The programme itself consisted of six group educational sessions led by a specialist respiratory physiotherapist and a fatigue specialist physiotherapist. Sessions focused on breathing pattern retraining and establishing a good energy management balance. One session was supported by a psychological well-being practitioner.  

Authors' reflections

Julie Moore said: ‘I am incredibly proud of the collaborative work that we have achieved during the pandemic. Working closely with Natalie, my fatigue specialist colleague and the psychological wellbeing team enabled us to create a successful, holistic programme that has been hugely beneficial for patients suffering with Long Covid. 

It has shown that physiotherapists play a key role in the management of patients suffering with the disabling symptoms of Long Covid.

Reflecting on the work in Leeds, Rachel Tarrant says: ‘As the Covid-19 pandemic unfolded our team rapidly coalesced to anticipate, study and respond to the problem of Long Covid. Our clinical team was early to highlight the long term effect of MERS and SARS and thereby warn about problems to come with Covid. We went on to study and publish on the longer term effects of Covid-19, which was crucial to galvanising action at a citywide level to respond to this wave of rehabilitation need in a timely way. 

‘Using this data, the emerging wider literature and by paying close attention to the experiences of our patients, allowed us to recruit accordingly across a range of appropriate disciplines to meet patients complex and diverse rehab needs. Using a PDSA model, in conjunction with vital patient feedback, we have rapidly continually evolved into what the service is today.’

Check out these innovations and more on the Innovations in Physiotherapy pages of the website for more practical examples and guidance on how to submit your own work.