Devastating News: Benefit Reform

The news on Benefit Reform from the U.K. Government yesterday has caused uncertainty, worry, stress and fear for many in the #LongCovid community.

People involved in the campaign know they’re likely to face cuts to the benefits they’ve managed to be awarded. Cass was on BBC Radio Scotland’s Kaye Adams show on 19 March 2025, talking about their very real worries and concerns.

So many in the #LongCovid community, former Keyworkers, have been denied benefits and haven’t been well enough to appeal decisions. Many have been denied medical retirement pensions, because we “might get better” with “future treatment”: Treatments that don’t exist and aren’t being researched.

On top of that, across social and other media, people who are ableist, holding extreme unconscious bias - the ‘Disability Police’ - have been spouting off, demonstrating their extremely narrow ideas about what disability is, the spectrums of conditions or how difficult it is to live and work with a chronic condition or disability, especially during a cost of living crisis.

Yet here we are again: Part of the 25% of the U.K. population with a disability, hidden or otherwise, chronic or long term condition, all who have needs to a degree, many if who have additional costs of up to £1000 a month, who have lost significant personal and family income because of work-related illnesses, injuries or conditions, being attacked and scape-goated again.

If there’s one thing you do after reading this, it’s complete the Green Paper consultation on Pathways to Work. This is especially important if you’ve already tried to stay at work. It’s also important to write to your MP and tell them your story or that of your friends, colleagues and family. Only do this if you can spare the energy.

One thing clear is that the public still have a very blinkered and biased view of not only what disability and chronic conditions are, or the spectrum, but also the impact on individuals. Nor do those in power. If you can, please tell people on social media, your friends and family, your elected representatives.

We have been calling for better support and compensation for Keyworkers with occupational long Covid for over two years. Many who might still be able to work if their employers adequately supported them with what they need, not what abled people think they need. If they’d acted firmly and swiftly to challenge bullying, harassment and discrimination. If they’d looked at posts and amended them to keep the massive wealth of experience they’re now losing. Square pegs don’t fit round holes - but you can chip away at the round shape and make them square.

Above all, we remind you that the activities most people have no issue with cost previous energy that impact on our ability to look after ourselves, others or work. Things like getting to a physical place of work, shower, dress, make a meal. We remind you that many of us have unpredictable and fluctuating symptoms, meaning there’s a very real need for flexibility based on our needs, not what people think is the meaning of flexible.

We have been in contact with elected representatives, other advocates in the community, we even did another survey last week, to build on work that we’ve done before, as well as others, such as the TUC and Long Covid Support. We don’t get any funding and we don’t have powerful individuals able to influence policy behind the scenes: All we do is self-funded and costs us in terms of health and relapses.

We could say more, obviously, but we will leave you with this: What’s happened to us, could happen to you. It could happen today, tomorrow, next week, next month. There’s plenty of people with Long Covid who were fit and active and who have had to radically change their views about the nature of chronic conditions and disabilities and discover the barriers those already in the community have been fighting for years.

This could happen to YOU. That’s why it’s important we all take whatever steps we can to challenge what’s happening with benefits reform in the U.K. Because tomorrow YOU might find yourself in the same position we did.