This morning, as I made my way to the bathroom, I spotted an A5 brown envelope sitting on the door mat. My heart dropped like lead inside me and I didn’t need to see the Belfast postmark to know exactly who the letter was from. As any UK readers in receipt of disability benefits will no doubt by now have fathomed it was a letter from the Department of Work and Pensions (DWP) regarding Employment Support Allowance (ESA), a welfare payment for those too sick or disabled for gainful employment.
Having been housebound and too sick to work for many years, there was a time when letters from the DWP seemed fairly routine; I knew exactly how long my benefits were awarded for and if an unexpected letter came through my door I never had cause to worry it might be anything more than proof of savings being returned, or notification of an inflation-linked change in payments in the upcoming tax year.
Although periodic reassessments were always a bit stressful (it’s humiliating having to depend on others for money and hard to be asked to dwell on the many things I can’t do when I cope by focussing on the few things I can) there was never any question of my benefits being refused. My GP and several consultants had found me medically unfit for work, Social Services assessed me as requiring daily homecare visits and the council saw sufficient need to adapt my home and fit emergency alarm cords. It was plain to anyone with an ounce of sense that, however much I might want to work, it just wasn’t possible and without assistance from the state, my health would continue to deteriorate.
Under the current government however, with reforms designed to cut the Welfare budget regardless of whether vulnerable people are harmed in the process, many disabled people now live in constant fear that their benefits may be stopped or sanctioned unfairly at any time. My medical situation hasn’t changed significantly in several years so in theory my entitlement should remain the same. I know too many housebound people who’ve had their benefits stopped however, even bedridden patients ordered to participate in Work Related Activities, to have any confidence when it comes to reassessment that my claim will be renewed. The fact that doctors directly involved in my care still find me unfit for work doesn’t mean a thing in this new system. Non-medical decision-makers within the DWP have the power to over-rule doctors’ assessments without ever having even met the patient.
When I first transferred to employment support allowance, I was dreading the transferral process having heard so many horror stories about severely ill people having their claims rejected for spurious reasons. Severe cognitive symptoms and difficulty holding a pen meant it took a full month for me to complete the forms. I worked on them every day I was well enough at the expense of all other pursuits and the physical and mental stress of doing so made me substantially sicker in the process.
I passed the first assessment with no hassles whatsoever and thought criticisms of the reforms must be grossly overstated but within weeks of passing the assessment, I was ordered to undertake a second despite not having completely recovered from the first one. As nothing had changed in the weeks since my ESA had started and too ill to complete the required forms in the timescale allotted, my only option was to send a photocopy of the original form with a letter from my doctor confirming that nothing had changed since my first assessment and that I was too ill to cope with such frequent assessments. Every assessment since then, I have simply transcribed my forms from the previous assessment with little more than the date ever being different.
Thankfully, to date, my award has always been renewed. I don’t know what I would do if it was ever rejected as I’m too ill to attend a tribunal. It typically takes up to a year for a tribunal to overturn a wrong decision only for many successful applicants to be called for reassessment almost immediately after. Since that very first assessment, I have never received written or verbal confirmation that I’ve passed any assessments. I simply assume that if my payments don’t stop within two months of reapplying that I must have been approved again. The amount I currently receive is several pounds a week less than it should be, based on savings of a thousand pounds more than I own in reality. I’m reluctant to challenge this however. I’d rather forgo the extra cash than risk having to go through yet another assessment.
The lack of paperwork means I never know how long my benefits have been awarded for. Assessments that used to come every two or three years now come at three, six or twelve month intervals with no prior warning. Every brown envelope that comes through the door now could be another assessment, a summons to a medical I’m too disabled to get to, or notification of the decision that my latest claim has been rejected. In the few seconds it takes me to open each envelope, my heart pounds and hands shake as I desperately pray that it is just a routine notification.
Thankfully this time that’s exactly what it turned out to be, but this constant paranoia about the threat of a sudden loss of income, is an ever-present reality for the chronically ill. It didn’t used to be this way for the most sick and disabled people and in a supposedly civilised country, I don’t think it ever should be.
Every January without fail since ESA first started, I have had to complete Work Capability forms in order to continue receiving benefits. This year however, I appear to have earned a bit of a reprieve. Not sadly because the DWP have realised the pointlessness of reassessing the severely disabled with such unnecessary frequency but because the system is in such chaos with such a backlog of appeals and unprocessed claims that reassessments for those already found unfit to work have been temporarily suspend. The DWP of course refuse to confirm this to applicants but a private memo leaked by a whistle-blower to the media indicates that for a short while at least, I may not have to jump through quite so many hoops to hold onto an income.
No doubt if the Tories are re-elected in May I’ll have many more assessments in the not too distant future. I still have the fun of a transfer from DLA to PIP to look forward to (thankfully the severity of my condition places me in the final group of claimants that will have to do this) but for a few weeks at least it’s been nice to do something more productive than to transcribe last year’s medical forms onto this year’s.
As I learned this morning however, the knowledge of a temporary reprieve still can’t diminish the panic I feel rising within me, when I spy another blasted brown envelope so innocently resting on my doormat.