Bold claim first: long Covid has been, in too many places, treated as yesterday’s problem—while real people still battle daily. But here’s where it gets controversial: the system that should support them is changing its approach rather than doubling down on care. This is the story of Susannah Thompson and countless others, and it asks a tough question about how we measure, fund, and deliver ongoing care.
Susannah Thompson, 46, from Blyth in Northumberland, contracted the virus in 2020 while treating Covid-19 patients. Within a year she needed to rely on a wheelchair after facing multiple medical issues stemming from the illness. Her experience comes as the NHS in the North East and Cumbria plans to close its last dedicated long Covid clinics this month—a move that patients and some local politicians describe as shocking.
The former GP says the impact is profound and personal: "I struggle to have a conversation. I’ve lost my thinking ability and short-term memory. I think that’s one of the hardest things." She and her family used to lead an active life; now she must carefully manage her daily energy to perform even basic tasks.
Her condition includes a heart issue, acute pain, skin and breathing problems, and mental confusion, all contributing to an inability to work. Thompson notes that patients are increasingly told to seek help across a range of specialists, depending on their symptoms, rather than through a centralized long Covid pathway. She describes the experience as: "It’s like having the worst flu and being hung over at the same time. Every day I decide to get out of bed and make the best of what I can while feeling terrible."
Official data last collected in 2023 indicated about 94,000 people in the North East had long Covid, with 64,000 experiencing symptoms for more than a year—the region had the highest share of long Covid cases. Thompson estimates there are "hundreds of thousands" of individuals across the UK with significant long Covid who cannot work and remain largely unacknowledged six years after the pandemic began.
"I never expected I’d become someone who would need to claim benefits. I was a doctor, I planned to keep working, and I can’t—that's devastating," she says.
A spokesperson for the North East and North Cumbria Integrated Care Board (ICB) said demand for long Covid clinics had fallen over time as patients’ needs evolved, adding: "With that in mind, we are moving away from long Covid clinics and instead guiding each person’s treatment by their symptoms, so they are referred to the most appropriate specialist for their needs."
North Durham MP Luke Akehurst, who chairs a cross-party parliamentary group on long Covid, criticized the closure following a constituent’s complaint. He told BBC’s Politics North: "Services that were there, instead of being enhanced, are being run down. I find that shocking and want to advocate for proper care in Parliament." He urged the ICB to reconsider the decision.
Dr Margaret O’Hara of the pressure group Long Covid Support voiced a common frustration: a sense that long Covid is being "swept under the carpet" and treated as if the condition doesn’t exist. She described a troubling feeling of being left in a void, with the public health conversation moving on while patients still suffer.
Dr Rae Duncan, a cardiologist and renowned long Covid researcher, emphasized that Covid isn’t over: "We’d love it to be, and the messaging may imply that it is, but the illness persists and continues to cause long Covid symptoms." He added that many patients feel abandoned as progress moves forward without them. He highlighted the potential of new drugs, contingent on safety and efficacy verified by trials, and warned that funding is essential to bring those trials to fruition.
The government responded by stressing that local integrated care boards should support long Covid patients and that GPs should refer patients to alternative existing services based on clinical need. They noted there is no single treatment for this often-debilitating condition and pointed to funded research and ongoing clinical trials as the path forward.
If you have thoughts on how healthcare systems should balance centralized clinics with individualized, symptom-driven care for long Covid, share your perspective in the comments below.
