Al P

I am still reeling from the government's announcements on changes (mainly cuts) in PIP and universal credit. Here's my perspective, as someone with energy-limiting disabilities.

I have been living with long covid, an energy-limiting condition since 2020. Before that I worked full time. I worked part time (self-employed) for a couple of years, then less and less since as my symptoms increased. It took me eight months to get PIP after applying in 2022. It took substantial efforts from a local charity for me to be awarded it. Without their kind help I would have gone without.

I am grateful that the welfare state provides, but it is still a huge struggle on the limited funds I receive. Reducing my benefits will not encourage me back to work. It will add to my overall stress levels. Stress is known to be a factor in energy-limiting conditions.

I desperately want to work again. I have a plan for returning to work. When I am able, I will take on small amounts of work, and build up slowly. As a self-employed person, this will in no way affect my benefit status, despite what the government has been saying about barriers to work. If and when I manage to earn enough, my benefits will reduce and then disappear. This is my long-term aim. With luck, I will be able to help fund my three children through university. Without that luck, it will be down to them to take on more debt.

The flaw in my plan? My health has not been improving. I am flat-bound most of the time, and my brain fog and exhaustion stop me from using my brain as I used to. I am one of hundreds of thousands of people in the UK with long covid struggling to get by, yet receiving no NHS support. I hear of various wonderful studies, experimental treatments and support, but have no idea how I might access them.

If the government wants to reduce the number of people on benefits, would it not make sense to give some sort of NHS support to long-covid sufferers? I don't need to be dramatically better to start working again. The right treatment might help me get there. Reducing benefits is the wrong treatment (I, for instance, will not score four points in any of the PIP criteria, despite genuinely being unable to work). It will push disabled people with similar energy-limiting conditions to the very limits of existence.