Living with long Covid can be devastating – it’s time our benefits system recognised that

For many, Covid feels like a long time ago. But for millions across the UK, it’s far from over. More than two million people – including children – are now living with long Covid. That’s more than the combined populations of Manchester and Birmingham, coping with a condition that has no cure, no protected NHS treatment pathway and no big charity fighting their corner.

Research from UCL shows long Covid disrupts daily life more than a stroke, and as much as Parkinson’s. People living with the most severe forms of long Covid are among the most overlooked in the healthcare system. Some are bed bound for months or years, unable to tolerate light or noise, too weak to sit up, speak, or eat without support. Families describe the devastation of watching loved ones fade into near-total incapacity, with little medical support and no clear path to recovery. They are left to pick up the pieces, while unpaid carers do their best to fill the gaps left by overstretched and under-resourced services.

I know this because I’ve lived it.

When I developed long Covid – not the most extreme form of long Covid, but a deeply challenging one nonetheless – I went through the same confusion and loneliness so many people face now. With no clear diagnosis, no real medical support, and little public understanding, it felt like I’d simply dropped off the radar. The brilliant Long Covid Support community gave me hope – but they’re a small team up against a big challenge.

Read more:

• ‘Being alive is utterly exhausting’: How Covid forced people out of work and onto benefits
• Poor women without education least likely to recover from effects of Covid, study finds
• I’m 18 and bed bound with long Covid. This is what it’s like to be held hostage by your own body

Long Covid cases continue to rise across the country, and for those already living with long Covid, reinfection can mean even greater deterioration. Many people are still waiting for recognition – let alone recovery.

People with long Covid are stuck with a double burden: a life-changing illness and a system that doesn’t believe them. One of the hardest symptoms is post-exertional malaise – a crash in symptoms after even small amounts of activity – which current personal independent payment (PIP) assessments don’t take into account. Nearly eight in ten people in a recent survey by Long Covid Support said their assessment didn’t reflect how their condition can fluctuate day to day. Two-thirds said their assessor didn’t understand long Covid at all.

It leaves people feeling written off – when they’re already fighting just to get by.

Long Covid Support is calling for the Department for Work and Pensions (DWP) to formally recognise cognitive fatigue. PIP criteria should reflect the complex, fluctuating, multi-system nature of long Covid. It’s a sensible first step that would make the system so much fairer for people living with energy-limiting, invisible illnesses, like long Covid as well as ME.

Change is really possible, but we need a proper plan. This means investing in thorough research. It means treatment – with the education of primary care and NHS staff initiated by the Department for Health and Social Care. And it means prevention – for instance, filtration in public buildings – especially hospitals.

We need to listen to those living with this condition – including the thousands who once kept our schools, hospitals and high streets running, and are now unable to do the everyday things they once took for granted: including speaking up for themselves.

That’s why we MPs should support Long Covid Support’s call – for the thousands of our constituents without a voice.

We might want to forget the pandemic. But we can’t forget the people still living with it, every minute. Two million kids and adults deserve more. They deserve a plan. They deserve hope.

Jo Platt is MP for Leigh and Atherton and is also chair of the APPGs of both long Covid and ME.

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