‘Long Covid forced me to quit the job I loved’: Benefit cuts fears of thousands still too ill to work
A senior lecturer forced to end her career after long Covid left her housebound has slammed the government’s pledge to slash the UK’s welfare bill, that she and so many others like her rely on.
Sarah Barley-McMullen, 55, told The Independent she is “dreading” news of the proposed cuts because, as a claimant, “the little independence I have could be taken away”.
She accused the government of “ignoring” the thousands of long Covid sufferers, many of whom need benefits to survive.
The 55-year-old, who is now a campaigner and volunteers with the charity Long Covid SOS, suffers symptoms including brain damage, vision and hearing loss as well as tinnitus, all of which means she can no longer cry or pursue her love of singing.
The combined effects of being immunocompromised and being in pain that has left her unable to walk unassisted has meant she does not often leave her house. “It’s changed my world beyond recognition,” she said, describing how she was forced to take ill health retirement and rely on her wife’s salary from March 2022. “[It] was devastating really, because that was my whole 17-year career as an academic that Covid had just taken from me,” she said.
Ms Barley-McMullen is far from alone. Five years on from when the pandemic hit, 2 million people in England and Scotland are estimated to have long Covid, according to the latest data from the Office for National Statistics (ONS).
Due to the 200 symptoms associated with the illness, it is difficult to get accurate data on how many sufferers are out of work, and how many of those are claiming benefits.
However, it is known that 381,000 long Covid sufferers are “severely limited in their ability to undertake their day-to-day activities”. And since the pandemic struck in 2020, there has been a marked uplift in the number of people claiming health-related benefits.
A new report released by the Institute for Fiscal Studies (IFS) this week found 4 million 16 to 64-year-olds now claim disability or incapacity benefits in England and Wales, which is up from 2.8 million in 2019.
With long Covid sufferers facing obvious human and economic impacts as a result of their debilitating condition, Ms Barley-McMullen described a “deliberate amnesia” that has grown around Covid and long Covid across the world as “cruel”.
It is demonstrated in the closure of some long Covid clinics – even as the condition poses an ongoing risk, with tens of thousands of new cases reported every week, according to the latest ONS data.
But while society appears desperate to move on from such a traumatic period, patients cannot – leaving many feeling they are being forgotten about.
Aaron Campbell, 31, agreed: “It’s really sweeping everyone with long Covid under the rug, the millions of people in the UK who didn’t die but their quality of life has been hit.
“All they did was breathe in at the wrong time, inhale the virus, and their lives get destroyed. But instead of the government being there with support and research – they get tossed to the side, because ‘we don’t want to talk about Covid again’.”
The Independent spoke to the 31-year-old, from Glasgow, more than a year ago, and he continues to battle extreme exhaustion, intense anxiety and depression including panic attacks, and severe agoraphobia, which has caused him to lose friendships.
Long Covid is defined by the World Health Organisation (WHO) as the continuation or development of new symptoms three months after an initial Covid infection, with symptoms lasting for at least two months, potentially for years, often affecting daily life and having no other explanation.
Mr Campbell, an administrator whose workplace has been accommodating of his long Covid, is among the patients calling for more funding and resources to be invested into research and treatments for the condition.
If the government does cut the welfare bill, sufferers argue these demands must be urgently met, and say better concessions are needed in the meantime, which they say could be encouraged by a public health messaging campaign to open up the public conversation around coronavirus again.
Ms Barley-McMullen said: “We know that over 2 million people in England and Scotland have long Covid, and if you think there are only [around 68] million people in the UK, then that’s a huge proportion of people that are being ignored.”
NHS worker Margaret O’Hara, caught Covid while working in a hospital and has now been forced to leave her job due long Covid. She said: “It makes me so angry. Yes, it’s terrible for the economy people being out of work sick, but they want to be back at work. You’re not providing any money for the research that would actually get to the root of the problem. All we’ve got is coping strategies.”
The 55-year-old, of Birmingham, now fears the inevitable hit to her future pension after quitting. “I’m absolutely destroyed with [long Covid],” she said, describing periods where she is bedbound and has to rely on her husband even for a glass of water.
“I really enjoyed my job – I would’ve been happy staying there until I retired. It’s pretty gutting to not be able to carry on with that… I feel like I’m a lesser version of the person I was before. I’m still me, but I’m not completely me.”
A government spokesperson said it was “committed to ensuring there are quality services across the country for people suffering with Long Covid”, which it acknowledged can have a “debilitating” impact on people’s physical and mental health.
“No single treatment currently exists for Long Covid, which is why we are funding research into the condition. We are also joining up health and employment support so people with long term conditions can stay in work and get back into work,” the spokesperson added.
