Some media coverage gives the impres–sion that everyone on benefits is a scrounger who doesn’t want to work and a drain on “us” honest, hardworking taxpayers. But what is it really like to be wholly dependent upon welfare benefits?

I was a higher-rate taxpayer and home owner. Following the death of my partner in 2007, I became a single parent and ran my own business. I had no direct contact with the benefits system and, if I’m honest, probably read those same headlines and thought: “Something should be done”.

Then, in September 2010, I had a brain haemorrhage. This caused a severe stroke that left me cognitively and visually impaired, doubly incontinent and totally paralysed on my left side. The prognosis was that I would need 24/7 care for the rest of my life. I was 50 and my youngest child was aged just 12 years.

I spent three months in hospital and, after intensive physiotherapy, I can now walk slowly with a foot splint and a walking stick. I still have a tendency to fall as my balance isn’t great. My left arm remains paralysed and I have some subtle cognitive difficulties with memory and attention. I have a carer for 14 hours a week. I have not been able to work since the stroke. Being on the receiving end of the benefits system has been an eye-opener, and the most demeaning and soul-destroying experience of my life.

A friend kindly completed a benefit application on my behalf while I was in hospital. The day after I was discharged I began the first of many telephone calls to the Department for Work and Pensions (DWP) as I hadn’t received the expected benefits. Calls were never answered promptly; I frequently spent 20 minutes on hold. Hour-long calls were the norm. Just making one or two phone calls a day was exhausting and draining.

I was politely informed that my benefit had been stopped as my medical certificate had expired. I had not been aware of the need for any medical certificate. The woman on the other end seemed to imply that I knew I should be submitting medical certificates every six weeks. It felt like she thought I was “trying it on”.

A supervisor agreed to arrange payments on the basis that I had been in hospital, as if she were doing me a huge favour, but explained that I would not receive any more until a medical certificate had been received. It was four days before Christmas. I was in the process of registering with a new GP. Fortunately, the hospital agreed to provide me with a new certificate. I thought that would be the end of the hassle.

January 2011 began with another call to DWP. I couldn’t understand why I would need to keep providing a medical certificate every six weeks when I was paralysed and still receiving hospital physiotherapy. I applied for free school meals for my daughter, but was told I was not on a qualifying benefit. At the end of January, the two-weekly ESA benefit was not paid and I was left with no money again. More phone calls.

I then received an appointment to attend my Atos Healthcare work capability assessment (WCA). I contacted Atos to explain my condition and that I couldn’t get to the appointment as I couldn’t leave the house on my own. Innocently, I didn’t give the matter another thought, until I received a letter accusing me of failing to attend my WCA and informing me that I was deemed fit for work and placed in the work-related activity group.

I was outraged, bewildered and confused. I had carers who came to get me out of bed, washed and dressed each morning; I couldn’t walk without a foot splint or quad stick. I was at risk of falling, my shoulder was strapped and my left arm remained paralysed. I was an outpatient still receiving physiotherapy, yet I was deemed fit for work.

DWP advisers came to my home to conduct my back-to-work interview. I would have to attend at least five work support sessions, such as helping me to write a CV, interview practice and one to identify my training needs. The training was limited to NVQ level 2 (pre-stroke, I had begun a PhD). They pointed out that if I didn’t attend the sessions or give evidence of my job hunting, my benefits would be reduced or stopped.

It suddenly began to feel incredibly scary. Was DWP really expecting me to go to work so soon? I was barely coming to terms with my newly disabled state, I could not look after myself, but I was “fit for work”?

My local MP, Chris White, contacted Atos and DWP on my behalf. The local welfare rights team also supported me in submitting an appeal against the work-related decision.

I was in utter despair, worried sick that my benefits would stop. All I wanted to do was to focus on my physio and recovery. In May 2011, I received notification that my appeal had been successful and I was moved into the support group, which mean I was not expected to look for work. My relief was immense. Eight months after the stroke, I was now able to focus on my recovery.

Subsequently, I received compensation from DWP – an ex-gratia payment of £25 and a further sum of £1.92 in respect to the one phone call they could identify I had made to them in connection with my benefit. Unexpectedly, I later received a written apology from Atos Healthcare. But there was no mention of how it would learn from the mistakes it made in my case to improve future services.

One year on, my challenges are now how to live. The benefits are more than an 8O% reduction in my former income. My only outgoings now are utilities, household insurance, mobile phone, internet and TV. After these are paid I have very little left to buy food, or anything else. There is no “spare” money for spontaneity, for treats or for emergencies. There are times when we have very little food in the house. My mortgage was large but affordable. Now the benefits cover only a quarter of the monthly amount. Arrears grow each month. I am at risk of repossession and, given my age, dependency on benefits and the arrears, I would not be able to obtain a new mortgage.

The welfare benefits system is predicated on the basis that everyone on benefits is feckless, and only capable of low-skilled, low-paid employment. There is much talk about protecting the vulnerable but when you are on the receiving end these sentiments are nothing but hot air.

The welfare system does need reform, but this needs to start with a change in attitude at the very top. The reality is that society’s most vulnerable are struggling to survive and are treated with little respect by the system. A society can be judged by the way it treats its children, elderly and vulnerable. On this test, the UK fails.

• A full-length version of this article appears in the Centre for Economic and Social Inclusion’s spring edition of Working Brief

The Guardian