Inside the creation of NHS England’s Your Covid Recovery service for long-term symptoms

As Boris Johnson faces a second wave, and the testing regime flounders, the next challenge will be mass rehabilitation of Covid-19 survivors still suffering symptoms.

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At this stage of its pandemic response, the UK government’s immediate priority is to avoid a second wave of coronavirus over the winter months. Striking the right balance between lockdown measures and improving the test and trace regime is paramount. Yet there is a third area vital to the nation’s public health and combating symptoms: rehabilitation.

On Sunday 5 July, the 72nd anniversary of the NHS, NHS England announced in a press release that it would launch an online Covid-19 rehabilitation service. The service would be called “Your Covid Recovery”, and would provide help for patients living with the aftermath of infection, beyond the Seacole Centre for coronavirus rehabilitation in Surrey, which opened in May.

Patients “who have been in hospital or suffered at home with the virus” were to have access to a face-to-face consultation with physios, nurses and mental health professionals. Based on that initial assessment, they would then be offered a bespoke package of remote aftercare lasting 12 weeks if they needed it.

NHS England’s press release described this service as being “available later this summer”, but only its first phase – an open-access digital bank of resources about the virus and many aspects of recovery – has so far materialised, published on 29 July.

It is a thorough, easily accessible site for patients and their loved ones. It also appears to have been popular so far, with 101,907 users and 128,431 sessions from 22 July to 14 September – with 87 per cent of users in the UK, 10 per cent in the US, and the remainder made up by France, Australia and the Netherlands. (For context, 403,551 positive cases have been recorded in the UK so far).

Yet the personalised rehabilitation programme promised in phase two of Your Covid Recovery has yet to appear.

See also: The rise of the “long haulers”: how long does Covid-19 last in patients?

Tim Spector, the King’s College professor leading the Covid Symptom Study app (which has more than four million users), estimates nearly 600,000 people in the UK could be affected by “long haul” symptoms. Yet when it was announced, the Your Covid Recovery service only mentioned an estimate of “tens of thousands of people” who would benefit from the on-demand recovery service.

The University of Leicester, where the service is being designed and trialled, suggests “around one in 20” patients are likely to have ongoing health problems after contracting Covid-19, including “breathing difficulties, tiredness and cough, reduced muscle function, a reduced ability to undertake physical activity and mental health problems such as PTSD”.

This means a significant number of people still suffering months on from being infected will be waiting for phase two of the rehabilitation service.

While investigating longer-term Covid-19 symptoms for an article published earlier this month, the New Statesman approached NHS England about the Your Covid Recovery service to ask about details and timings, but a spokesperson declined to provide further details beyond the information already outlined on the website.

They did, however, put us in touch with the doctor leading the Your Covid Recovery service, Professor Sally Singh, head of Pulmonary and Cardiac Rehabilitation at the University Hospitals of Leicester NHS Trust. The NHS England spokesperson suggested we speak on background with Professor Singh, who was happy to speak on the record.

Leicester’s hospitals have a decade of experience in developing and delivering online rehabilitation programmes, including “Activate Your Heart” for cardiac rehabilitation and “Space for COPD” for pulmonary rehabilitation.

“We know both of those interventions are positive – not only clinically effective but cost-effective as well,” says Professor Singh. “So the suggestion was to then develop something similar for the Covid population.”

She reveals that the Leicester pilot has included contributions from a whole range of groups – including the Chartered Society of Physiotherapy, the British Psychological Society, the British Dietetic Society, the Royal College of Occupational Therapists, the Royal College of Speech and Language Therapists, and the British Society of Rehabilitation Medicine – who have “particular expertise in a number of the symptoms we know patients post-Covid are displaying”.

After putting the bid in to help create the service as coronavirus was peaking, the Leicester team began designing the programme in May, “working with patients all the way through, hearing their stories”. Patients have reviewed every part of the website’s content, and will also trial the second phase before it is rolled out nationally.

Professor Singh calls the second phase “in development”, and says “we’re looking now at the end of summer, early October” for its launch.

“It’s a very complex site with a very sophisticated backend that allows healthcare professionals to interact with patients and track their progress,” she says, also noting the need for “internal sign-offs” and “additional checks” from the publications department of NHS England. “But I think that’s probably a good thing in the end in terms of quality.”

See also: How Covid-19 is still confounding doctors after six months

So how will it work? Individuals who have had Covid-19 (and are no longer infectious but still suffering from symptoms attributed to the virus) will be able to see a healthcare professional face-to-face for an assessment.

“When we started this, the focus was very much on hospitalised patients,” says Professor Singh. “We’re now becoming more aware of groups of people that are managed in the community who display a number – if not all – of the symptoms but haven’t had a positive diagnosis.”

She says NHS England is working on “pathways” for such patients, and adds: “There is no reason why these patients wouldn’t have access to this type of programme.” In Leicester, for example, patients referred by their GPs are starting to be offered face-to-face rehabilitation. “These referrals will have been reviewed by the primary care team, their collection of symptoms attributable to Covid, and no contraindications or outstanding investigations stopping them proceeding onto this recovery programme,” she explains.

It depends on each hospital’s approach, but in Leicester there would be a “very basic walking test”, in order to ascertain a patient’s physical capacity, and help them “set an exercise programme that’s right for them, so that it’s individualised”.

Patients would have online access to bespoke rehabilitation sessions and a patient forum to swap stories and share information. They would also be able to contact their health team with queries.

“We know that the common symptoms are breathlessness, fatigue, pain, but people are also reporting problems in terms of how they actually manage their day because of their fatigue or cough, they’re having problems with their activity levels, their thinking, and their memory skills,” observes Professor Singh.

“So there’s going to be a whole goal-setting aspect to this that patients can delve into in more detail, if they want to,” she says. “What are the most important areas to them? If they say ‘getting back to work is really important to me’, we would want to understand why they thought they couldn’t return to work: Is it because they are fearful and anxious? Short of breath? Or their head just wasn’t in the right place to be able to cope with work?”

Depending on their individual barriers, patients would be guided through a programme to help in those areas, and also the opportunity to “review their goals”. There will also be “safety warnings” within each section of the process “to identify patients whose general direction of travel wasn’t what we’d anticipate” – and they could then be referred back to their clinician.

Professor Singh is clear that while Your Covid Recovery is “a solution for some people”, it is “not appropriate for everybody”, and there will be a “huge proportion of people who don’t like doing things” this way. “We can’t deliver face-to-face rehabilitation for everybody who might need it, and equally everybody who might need it would not want it.”

Anoosh Chakelian is the New Statesman’s Britain editor.

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