'There’s a lot of nasty stuff': the people living with long Covid

Sufferers say they have had little specialist help despite NHS England setting up dedicated clinics

“It’s not that I feel I have been abandoned, I think that is perfectly obvious,” says Rachel Pope. “If you speak to any long Covid patient, they have been abandoned.”

Until exactly a year ago – 5 March 2020 – Pope was “an incredibly fit woman”. A senior lecturer in European prehistory at the University of Liverpool, her work and lifestyle were very active. But after falling ill to Covid, she spent four months unable to walk, then three more when she could manage little more than “a sort of shuffle”.

She still has a host of symptoms, “but the most debilitating is the fact that I still can’t do more than 2,000 steps in a day. Until a few weeks ago, I was still choking every day. There’s a lot of nasty stuff that [long Covid sufferers] are living with, without treatment.

“It’s not a great situation to be in. I mean, we didn’t die. But this isn’t exactly living either.”

A year into the pandemic, accounts such as Pope’s have become dispiritingly familiar, as the experiences of the many thousands who have struggled for months with long Covid, often alone and unsupported, are emerging.

But their stories still have the power to shock. Between June and September last year, Pope rushed to A&E three times with terrifying episodes that she describes as being “like a heart attack”. On one visit she was given medication for an inflamed stomach, but apart from that, she says, “I haven’t been prescribed so much as an aspirin in a year.”

She no longer bothers to call her GP when she has bad days, because “she just doesn’t have time. It’s been made very obvious to long Covid sufferers that we’re not critical, and unless we’re presenting with [an acute problem], there really isn’t the medical care for us.”

The health secretary, Matt Hancock, says he is “acutely aware” of the seriousness of long Covid, and late last year, NHS England announced 69 new specialist multidisciplinary clinics for long Covid, bringing together a range of specialist medics, physiotherapists and occupational therapists to address a condition for which more than 200 symptoms have been identified.

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But after months of what many feel is neglect by the healthcare system, it is clear that if specialist help is coming, it is yet to reach a great many long Covid sufferers.

Carolyn Chew-Graham, a GP and professor of general practice research at Keele University, told the Guardian that while some specialist clinics were genuinely excellent, in other areas they were not yet operational or offered limited services. “It’s very, very variable.”

An NHS England spokeswoman said all the listed clinics were up and running, though the services offered vary. More are expected to be announced later this month, she said. The clinics are only in England, however, with Wales, Scotland and Northern Ireland yet to establish similar multidisciplinary hubs.

A recent Guardian callout asking long Covid sufferers for their experiences echoed this hit-and-miss picture. While some of the almost 400 respondents had been supported by their GPs, others reported being disbelieved, rebuffed or offered little or nothing in the way of meaningful help.

Gemma Duggan, 39, formerly a senior director in a charitable housing provider, caught Covid last March. “Despite the shortness of breath, temperature, shivering, blue lips and crushing feeling in my chest, I was told by NHS 111 it was anxiety.” She went to hospital in July and, “as I sat in front of the doctor, not able to sit up as my chest was on fire, so tired I wanted to lie on the cold floor of his consulting room, he said to me in a chipper voice: ‘Great news, the chest X-ray is clear.’ It did not feel like it was great news.”

She has not worked since, and can manage little more in a day than taking her children to school and showering, before having to return to bed. Her GP is sympathetic, but she has been told that in her area of Staffordshire there is no specialist help to refer her to.

After becoming aware of the emerging problem late last spring in her own work as a GP, Chew-Graham published some of the earliest in-depth research into sufferers’ experience, and has continued to monitor the condition. At the time, she says, “the narrative was of not being believed” and patients were having to become experts in their own condition.

While awareness among doctors has improved, she says, in many places there is still nowhere for them to refer patients for specialist help. “So actually, it is difficult for a GP, if they make a diagnosis of long Covid, but they then [have to] say: ‘I am not sure where to refer you to.’

Even if everyone were able to get a diagnosis and referral, this is an enormous problem, the scale of which we are only beginning to comprehend, she says. Up to 400,000 people may be experiencing long Covid symptoms, MPs have estimated. “But we don’t know about the second wave, we don’t know with the new variant,” says Chew-Graham.

“It feels like a never-ending story and I’ve almost forgotten what it feels like to feel fresh again,” says Michael Panayi, 31, who works for a mobile phone company in Nottingham. Though he still, 11 months on, has fatigue, muscle weakness, insomnia, a racing heart, a cough, neurological illness and pain, both an ECG and chest X-ray have come back clear, and he says he has been refused access to a long Covid clinic.

“The doctors don’t know what to do with me and I’m stuck at home in limbo, waiting for the day that someone figures out how to fix me.”

Contributor

Esther Addley

The GuardianTramp

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