For Thomas Atkin-Withers, just getting through each day is a battle. They suffer from complex neurological conditions, are in constant pain, but to make matters worse, they are now frightened that the financial lifeline they receive is about to be taken away.  

The 21-year-old disabled student diagnosed with autism, suffers from depression, chronic fatigue and hypermobile joints, and receives exactly £737.20 a month from their Personal Independence Payment (PIP) plan, which just about covers their rent, water and electricity bills, food and medical costs. 

But they are worried the government’s latest overhaul of disability benefits mean they will be left financially destitute.   

“As someone with a lifelong disability, this isn’t going to get better for me,” says Thomas, from Beauchief. “It’s only going to get worse, both for me and for my family.”

Thomas’ hypermobility is debilitating. It leaves them with severe pain in their joints, especially while walking or doing basic activities, including walking, cooking or even showering. Thomas needs their husband’s help to get washed and help putting their clothes on, because there are days they cannot even get their socks on. 

“It’s not easy, and the fact that I’m even here is a miracle some days,” they say. 

Thomas’ parents are also disabled and receive PIP. Their dad has Multiple Sclerosis (MS) and mum has debilitating chronic fatigue syndrome. 

A PIP is a payment plan designed to help disabled people with long-term physical or mental health conditions or disabilities. It is based on a points system that assesses a person’s ability to perform daily living activities and mobility tasks, with a score of 8 or more points for either component leading to a standard amount (roughly £73), and 12 or more for enhanced amounts.

Thomas, who is currently studying an MA in Urban Planning Integrated at the University of Sheffield, has been able to manage their finances with the help of their husband, Avery, juggling the amount they receive from PIP and Universal Credit. 

“At the moment, at least we don’t have to worry about getting evicted,” says Thomas. “My rent is covered, so is my water, electricity and travel costs.”

They strongly disagree with the government’s rhetoric that the current system is broken because of ‘overdiagnosis’. 

“I feel like my body is constantly trying to kill me,” says Thomas. “It’s not easy, and the fact that I’m even here is a miracle some days. This isn’t an overdiagnosis. This is a crisis based on the conditions our current society inflicts upon people.

Thomas takes a mix of medication for their disabilities, including  paracetamol, ibuprofen and voltarol. Without these, they say they would not be able to walk properly, would suffer from constant migraines and suicidal thoughts due to their depression and anxiety. 

They believe it’s insulting that the general rhetoric around disabled people is that they are ‘scrounges’. 

“We’re not spending thousands of pounds on holidays,” says Thomas. “We’re not jetting off to far flung destinations or buying luxury cars. We are living, we are scraping by – that’s what PIP allows us to do.”

In December last year (2024), after a fall, and because the texture of their connective tissue is so flexible – they tore all the tendons in their feet just by walking.

Thomas couldn’t even take a break from university classes afterwards as they were worried about falling behind. Instead Thomas returned to university the next day with their feet stuffed into crocs because they wouldn’t fit into their shoes due to heavy swelling. 

Commuting is a huge issue for Thomas, just getting on buses is problematic. “If a bus is full, I have to wait for the next one, because going up the stairs on a bus has become risky enough to extremely injure me,” they say.

This is why they say PIP is essential for someone like Thomas. The PIP covers the cost of taxis to and from university when they cannot take the bus or if they feel unwell enough. 

“Without PIP, I wouldn’t be here, without PIP I would not have been able to live,” says Thomas.

Thomas disagrees with a lot of things listed in the green paper which was released last week – such as face-to-face disability assessments–  but there are a couple of things they think are essential, including the scrapping of compulsory work capability assessments, which they  believe are dehumanising for disabled people. 

They added that the move to allow disabled people to go back to work without taking away their benefits is also a very positive one. 

“PIP cannot be touched,” in Thomas’ opinion, who feels strongly that the financial aid should not be taken away. “I say this as someone who gets that there isn’t that much money available, but the government has to find other sources of money. We need to tax the rich higher than the amount we do now so we can take care of our disabled population.”

Thomas also believes PIP barely allows some people to survive. “It isn’t enough,” they say. “There are people on PIP who still have to count pennies before they see their friends, who cannot afford basic necessities like food and heating. PIP is a baseline.”

Thomas also explained how difficult it is to navigate the current benefits system. They said that there is no easy guide to finding the right kind of benefits for different disabilities, despite several voluntary organizations trying their best to help. 

“It isn’t signposted clearly,” they say.  “It is like trying to find your way through a maze with a blindfold over your eyes and noise-cancelling headphones on. That is a symptom of a failing government and a failing nation.”

Thomas volunteers for a charity that helps young people and disabled parents with caring needs, but believes that in a welfare state, the fact that these organisations exist are the signs of a failing government.