Ensure long term support is available for COVID-19 survivors

Healthcare systems around the world need to develop ways of supporting people in the community who are recovering from COVID-19, say researchers.

If they don't, there is a risk that people experiencing long-term symptoms will get worse and put additional strain on already-stretched health resources.

Although COVID-19 starts as an acute infection of the lungs, it can develop into a "multi-system illness" leaving people with symptoms that can last for months and years – including breathlessness, fatigue, weakness, pain, cardiac problems, cognitive and psychological problems.

More than one-third of the people who have been severely ill with the disease could have long-term symptoms, some of them debilitating.

The study – Development of an integrated rehabilitation pathway for individuals recovering from COVID-19 in the community – by experts from the University of Leeds, Leeds Teaching Hospitals NHS Trust, Leeds Community Healthcare NHS Trust and NHS Leeds Clinical Commissioning Group has been published in the Journal of Rehabilitation Medicine.

Dr Manoj Sivan, Associate Clinical Professor at the University of Leeds and a Consultant in Rehabilitation Medicine in the NHS Trusts, led the research project. He said: "It has been estimated that to date, 23 million people worldwide have been infected by the disease. Most will have experienced a mild illness but a sizeable minority, up to one million, will have after-effects that will last for many months and possibly years.

"We know from previous outbreaks of Spanish flu, SARS and Ebola that up to a third of survivors can suffer from long term problems, particularly chronic fatigue that has implications on family life, work and health economy.

"With COVID-19, there is an opportunity to intervene early, provide timely specialist rehabilitation, and ensure people have the best functional recovery and return to their vocation as early as possible."

Lisa Hollingworth, Senior Commissioning Manager at NHS Leeds, said: "Collaboration between commissioners and providers in the city has resulted in the development of clinical guidance and new pathways for the provision of rehabilitation services post COVID-19, including a specialist Multi- Disciplinary Team.

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"The resource investment to date is £500,000 supported by NHS Leeds Clinical Commissioning Group."

How patients in Leeds are screened

The researchers describe a telephone screening and referral service that has been pioneered by the Leeds COVID-19 rehabilitation teams at Leeds Teaching Hospitals and Leeds Community Healthcare NHS Trusts.

People who have been severely ill with COVID-19 are contacted either by their GP or a specialist member of the hospital's rehabilitation team six and 12 weeks after recovering from the acute phase of the illness. They are asked a series of questions about – and scored on – any persistent symptoms and how well they are functioning.

The questionnaire called C19-YRS (Yorkshire Rehabilitation Screen) takes about 15 minutes to complete.

The screening identifies symptoms that need to be urgently assessed by relevant specialist healthcare professionals in secondary or primary care services. Services include respiratory medicine, pulmonary rehabilitation, physiotherapy, occupational therapy, psychology or combined multidisciplinary clinics.

Self-help resources have been developed, and the NHS England is planning a website 'Your COVID Recovery' which is expected to go live soon.

Dr Ian Clifton, Honorary Senior Lecturer at the University of Leeds and Consultant in Respiratory Medicine, added: "One of the challenges we face is that COVID-19 is a new disease and we do not yet know the course that people will follow as they recover. It is essential that recovery services have input from a range of specialties, so expert help is on hand when and where it is needed."

Research by Dr Sivan and colleagues earlier in the summer identified the common longer-term symptoms experienced by COVID-19 survivors who were severely ill with the disease. The top three were fatigue, breathlessness and psychological distress.