I spent 18 years on benefits – the welfare system needs an overhaul
After two decades of being too ill to work, I know what it's like to rely on welfare. As the Government announces a crackdown on disability benefits, people like me are right to be nervous.
Just over a year ago, I found myself in the unusual position of looking for work after almost two decades of being unemployed. I had been on one type of benefit or another since the age of 23, after receiving an unexpected diagnosis of Hepatitis C.
I discovered I was infected with the disease of the liver after my mother was diagnosed after a routine blood test. This came as a big surprise for me but not for her, as for a period of her life she was an intravenous drug user. A few months later we both started treatment together and I moved in with her so we could support each other.
Initially, I resisted going on benefits as I was told the treatment for my condition would only take 6 months, so I made the decision to move back in with my mother for support and tried my best to plod on. After a tough couple of months, I quit my well-paid job as a tech developer at a design agency as symptoms started to take their toll. I reluctantly signed on for Jobeeker’s Allowance (JSA) and counted down the weeks.
Six months later I was given the all-clear. However, I was left with a plethora of debilitating side effects which I was told would take a bit longer to go away. Another six months passed and I was only getting worse: I was severely underweight and dealing with low energy and excruciating daily migraines. After seeing my GP she advised me to apply for Incapacity Benefit (which later became ESA) as a temporary measure, which I did.
“It became an exercise in point scoring; how far could I walk for a bus, what weight could I comfortably carry, how often did I clean myself? Score enough points and you would be left alone for another year.”
The following 18 years became a blur of hospital appointments, tests, procedures, pills and pitiful depression. My social and work life had completely disappeared and my mental health was rock bottom. During these lost years I had to constantly toe the line with the Department for Work and Pensions (DWP) as they made multiple attempts to remove my benefits and it was a constant source of stress and worry, which made my overall condition worse.
Each year I would make the same journey to the assessment centre run by Atos, a private contractor hired by the Tory government, where I would have to convince them that I was still unfit for work. The people who assessed me had little or no medical training and it was clear their primary concern was to reduce the number of benefits claimants.
It became an exercise in point scoring; how far could I walk for a bus, what weight could I comfortably carry, how often did I clean myself? Score enough points and you would be left alone for another year.
Twice I had my benefits stopped and had to appeal the decisions. Both times I received no benefits for six months while awaiting an appeal date and if it had not been for the support of friends and family I’m not sure how I would have coped.
At both tribunals, I was assessed by a small team – including a doctor and a legally qualified judge – who decided to overturn the decision and backdate the money I should have received.
After the death of my mother in 2015, I found myself homeless while the council decided whether to offer me somewhere to live which thankfully, they did. This only made things harder financially and my already fragile health got worse. I spent most of the COVID lockdowns holed up in my one-bedroom flat and eventually, I was diagnosed with complex PTSD as I became more and more isolated.
Just when I had given up hope, something miraculous happened. I quit the various medications I had been taking over the years and my health started to improve. I put on a healthy weight for the first time in decades and gradually my energy returned. I decided it was time to think about work again.
“Those who find themselves in the crossfire of the latest cuts have every right to be nervous, as some collateral damage is to be expected.”
Initially, I was concerned about the transition from long-term benefits to employment, as my health was still not 100 per cent and I had no financial safety net. With Employment and Support Allowance (ESA) I was permitted to work fewer than 16 hours or earn £183.50 a week without my benefits being affected. So with some trepidation, I tentatively started applying for jobs.
After months of rejections, I eventually found a job as a support worker for a neurodiverse theatre company, a complete departure from my previous line of work in IT. In hindsight, this was a blessing as they were very supportive and provided an inclusive workplace for me to find my feet again.
I am very lucky and I know it. I still have my university debt to pay off and my overdraft to climb out of, but I am determined to get to the point where I don’t need benefits at all. Others who find themselves in the same situation may not be so fortunate – not everyone has access to the resources I did.
The Chancellor, Rachel Reeves, has laid out the government's plans to overhaul the current benefits system, in an attempt to reduce spending. Under Tory leadership, Iain Duncan Smith targeted the most vulnerable in society and tried to get as many claimants as possible back into work. These reforms resulted in incorrect decisions, sanctions, appeals and worst of all – deaths. Those who find themselves in the crossfire of the latest cuts have every right to be nervous, as some collateral damage is to be expected.
But it’s not all bad news. I welcome some of the proposed reforms such as the scrapping of the Work Capability Assessment (WCA) which looks at claimants' ability to work in a very black-or-white way; as well as the reduction in assessments for those with more severe long-term conditions, which is a no-brainer in my view.
Perhaps the biggest change is the proposed incentives allowing claimants a “right to try” work, without fear of reassessments or reduced payments. This was my biggest concern when making my first tentative steps back into employment and it will go a long way to allaying doubts. However, this will only be successful if claimants are encouraged to try work in a supportive way and if workplaces are prepared to adapt to those with different needs.
I also agree that in essence, the current benefits system is outdated and needs to be changed. There is no one-size-fits-all solution and whatever the proposed reforms are there are bound to be some camps that find fault. I believe this Labour government has a more empathetic approach than previous governments and although it might not be a perfect solution, it will hopefully be a step in the right direction.
I am so unbelievably grateful to live in a country where we have a robust and well-established welfare system. Some people are quick to knock it and say it’s too restrictive or not hard enough. Wherever you sit on that particular fence, if it wasn’t for the benefits system I wouldn't have been able to survive during the long years of my illness.
About the author: Cieran Brown is an Anglo-Irish musician and writer from SW London. He works as a support worker for a neurodiverse theatre company and teaches guitar in schools. After overcoming a long-term health condition, he is relishing a second chance at life and enjoys painting animal portraits. He is passionate about storytelling and is currently working on a script.
Read our take on the looming cuts to the welfare system in The Lead Untangles. This powerful opinion piece by Tiger-Lily Snowdon calls on the Government to deliver on their long-delayed support for people living with chronic health conditions like ME. Rachel Charlton-Dailey has also penned this powerful piece on the benefits system changes. Consider becoming a paid subscriber or upgrade to paid to support us in bringing independent journalism and marginalised voices to the fore.