I need my daughters’ help to cut up my food and get out of the bath, but my disability benefits assessment says the fact that I can hold a cup of water counts as evidence that I’m fit for work. The government must take notice of the latest recommendations on how these benefits are assessed.
Over the last year, my life has changed beyond recognition. For 19 years I worked as a nurse, most recently in a hospice. I’d do long shifts on my feet for 11 hours a day.
I’ve never had to know the first thing about the benefits system.
But then I started to feel tired and in pain all the time. I had to have time off work sick and, last summer, I was diagnosed with rheumatoid arthritis – a condition that, according to Arthritis Research UK, affects around 400,000 people in the UK. Since then, I’ve also been diagnosed with osteoarthritis, fibromyalgia, and irritable bowel syndrome. It might be pain in my hands one day and, the next day, pain in my feet, my neck, my back. I’m always tired, always aching. I used to be up at the crack of dawn – bright and cheerful. Now it takes me two hours to get out of bed. My daughters come around in the evenings to cook. It knocks your confidence, your self-esteem, everything.
If you read my Employment and Support Allowance (ESA) assessment, I don’t think you would recognise it’s about me. In fact, my ESA assessor gave me a score of ‘zero’ and ruled that I was fit for work. After having my ESA stopped, I asked to read my assessment. I was appalled. For example, I take my dog to the small field behind my house as often as I’m able. It takes five minutes. When I read my assessment, it said I ‘walk the dog on treks everyday’. I felt they had picked out some of my answers and exaggerated them. I got penalised for driving to the assessment. I got penalised because I could hold a light carrier bag or a cup of water. I got penalised because I looked okay. The assessor also questioned whether I was depressed, because it wasn’t visible, even though I have a diagnosis of severe depression. My benefits were stopped and I was forced to sign on at the job centre.
And I’m not the only one. This week, it was reported that more than £100m has been spent on disability benefit appeals in just over two years. And, a few days later, the Work and Pensions Select Committee published a new report recommending urgent improvements to the system. I was one of more than 4,000 people who submitted evidence for that report.
To me, if you’ve got letters from your consultant and your doctor stating your condition and how it affects you, that’s enough. And, if they are going to give you an assessment, they should involve someone who understands your condition. The assessor needs to understand what’s wrong with you. Arthritis isn’t always visible, but it has a huge impact on my life and what I can do – things that the assessment didn’t pick up. If I’d have known what was going to happen, I’d have taken someone with me to the assessment and I would have recorded it. But I didn’t know.
It’s only in the last month that the advisers at the job centre have finally realised that I am not able to work, and advised I apply for Universal Credit.
The Work and Pensions Select Committee report makes lots of recommendations, including about how assessments are recorded and the medical expertise of the assessors. Changes that could have really helped ensure my assessment was fair.
I feel like I’ve lost my dignity through this process. The government needs to listen to real people and it needs to listen to this report.