Why I'm sceptical about the NHS's coronavirus recovery service
On Sunday, NHS England announced plans to create a Covid-19 recovery service for those suffering long-term symptoms of the virus. Patients will receive a face-to-face consultation with a rehabilitation team, a personalised treatment package, and 12 weeks of online support. The service will also include mental health care, such as access to a psychologist via an online hub.
This is a much needed intervention. While the majority of people who contract coronavirus will recover quickly, we are increasingly hearing accounts of “long haulers” – people who may have experienced just a mild version of the illness but have been left with breathing problems, fatigue, or other debilitating symptoms. Research from King’s College London shows as many as one in 20 Covid-19 patients experience long-term symptoms for at least a month, sometimes longer. Maastricht University found nearly 88% of patients surveyed reported persistent intense fatigue, while almost three out of four had continued shortness of breath. Others report having to take several months off work or even being bed bound.
Anyone who has needed longterm care from the NHS, however, will have listened to the announcement with some scepticism. The truth is, for all its strengths, the NHS has long struggled with treating chronic conditions. Before the pandemic, millions of people with chronic illnesses were silently suffering, often forced to navigate life-changing symptoms with highly limited medical support. I developed a type of post-viral fatigue from the flu two years ago and have received little long-term care from the NHS, despite struggling to get out of bed. As I write this, I’m waiting for a phone call to get me on a waiting list for a phone call.
It is like being ill in the dark. Years of underfunding the NHS have scuppered many services; waiting lists for pain and fatigue clinics are long, physiotherapy in the community can be nonexistent. This is not just a problem for the UK. Medical research globally is still poorly equipped to treat fatigue or pain; while some doctors try valiantly, others are openly indifferent to it. Gaining a diagnosis or even having your chronic symptoms believed is often a battle in itself, something that can be even harder if you’re black, trans or a woman.
Public pressure over a global pandemic has rightly led the government to think long-term on coronavirus, but it’s time to do the same for those battling chronic illnesses that don’t make the headlines. We must avoid a twotier healthcare system in the coming months, one where coronavirus patients are rightly given a rehabilitation programme but those struggling in the aftermath of other viruses aren’t. Will people with ME be eligible for the mental health hubs offered to Covid-19 patients? Becoming housebound by an illness other than coronavirus doesn’t make it any less traumatic.
Equally, we must ensure the government’s support for coronavirus patients actually materialises. There are positive signs with the proposed joined-up strategy, as well as the recognition that physical and mental health are linked. Too often, chronically ill people are left to scramble together their own jigsaw of care: begging for a physio, talking to a separate pain team that has no link to their other specialists, and having to go to the private sector for therapy.
Above all, it must be a patientcentred approach in which people are treated like human beings: parents who are desperate to be able to play with their children again or employees who long to get back to work. Real medical care not only keeps you alive but strives to help you regain a quality of life.
None of this is possible without sufficient funding. The chancellor, Rishi Sunak, has already been accused of breaking a pledge to give the health service “whatever it needs” after he refused to provide a £10bn cash injection for a potential second wave. Resources for rehabilitation services will be in ever greater need of support when the health service starts dealing with the vast backlog built up in lockdown.
Until you are wading through longterm illness alone, it is hard to imagine how this feels. It is deeply isolating, as if your life has disappeared and no one has really noticed. It is also exhausting: you must deal daily with fatigue that puts you in bed, but find the energy to search for medical care. As a society, we rarely talk about this. It is easy to think about illnesses that can be fixed, much more challenging to admit many others are complex, slow or permanent. These are conversations that any wealthy, modern nation should have long been having – but it is not too late to start. As the world learns more about living with coronavirus, now could not be a better time to put long-term care on the agenda – for every patient who needs it.