“My ESA is stopping soon, at least until I’m assessed.”
“Because the assessment rate is only for a year. If I’m found not fit enough to work, it will start up again.”
“But it’s their job to assess you?”
“Yes, they are supposed to do it within 13 weeks, but they haven’t done it yet.”
“So, it’s their fault? You sent your forms back didn’t you?”
“Yes, I chased the forms and sent them back, within the deadline, back in April.”
“But, then, how can they stop your money when it’s their fault?”
Last summer I realised I wouldn’t be fit enough to return to University in September. It wasn’t a happy decision, but I did feel relieved. I contracted ME around Easter 2015, near the end of my first year. I managed to attend most of my second year, although simply getting in to classes took so much out of me that I missed all my assignments in the first semester.
I got worse, and by July 2016 I accepted that I physically couldn’t carry on. ME affects mobility and cognition – I cannot currently learn new things very easily (not great for uni) or remember words (particularly unhelpful for Creative Writing). I also can’t read a book; a lot of the time my hands and wrists are too tired to hold it up, I cannot concentrate on the words, and I get eye strain.
In terms of looking after myself and my daughter, I can’t use the oven most days as I forget to check the temperature, I put things on to grill instead of bake, or I forget they are there altogether. Frankly, even if I manage to microwave something, it slips my mind so quickly that I’m usually surprised by the sudden ding. I can’t stand or sit with my legs down for long as my blood vessels don’t respond to the change in motion and my blood pools in my lower body causing my heart rate increases to compensate, usually hitting 130+ within a couple of minutes. Most weeks I’m completely bed-bound with a migraine for 2 days as well. I often need a wheelchair on family outings.
Until I returned to Uni, I had worked since I was twenty (more than ten years, full time until I had my daughter) – so this was my first time claiming any benefits. The first type I claimed was Employment and Support Allowance (ESA) which has replaced Incapacity Benefit. As I have a partner working more than 24 hours a week (Yes, apparently one person working part-time can support themselves, a child, and a disabled partner, who knew??!) I am claiming Contribution Based ESA – it is based on my national insurance contributions, and is something any working age person with enough contributions can claim if needed.
I rang the DWP to start my claim. Around a month later, I received confirmation that I was to be paid ESA at the assessment rate of just over £70 per week. This was around mid August 2016, and my claim was backdated to June 2016. To maintain this, I had to send in regular Fit Notes from my GP. Sometimes the DWP would send text reminders, sometimes not. Sometimes they would send texts to confirm receipt, sometimes not. Communication was always hard, taking up to thirty minutes to get through to an operative on the phone, and their knowledge / mood being completely unpredictable.
I should have had an assessment (outsourced to a private company) within the first 13 weeks of my claim. Discounting the backdate, this is now well over 6 months overdue, despite my full cooperation and chase-ups. And because they have not carried out the assessment, my payments have been stopped. In the meantime, my NI contributions are being paid, but we receive no practical help; Contributions based ESA does not entitle me to anything else, such as free prescriptions.
Late last year, I also applied for Personal Independence Payments, known as PIP. This has replaced Disability Living Allowance for all new claimants over 16. Whereas ESA is designed to replace your income if you are unfit for work, PIP is a payment made to someone with a disability or long term health problem that affects their ability to care for themselves, or their mobility. It is Rights Based, which means that income and assets are not taken into account, and it should be available to anyone who has additional needs. Should be. PIP does not get paid before assessment, and waiting times vary by region.
You may have seen some extreme examples of how these assessments are conducted; terminally ill parents are told they can clearly move as they reached out to hug their child. People in comas are told they can care for themselves. These cases often make the news, but it’s easy to assume they are the exception.
What I really want you to know about these assessments is that they are designed to prevent you claiming benefits.
Their remit is not “stop people claiming benefits who don’t qualify or don’t need them.”
The “healthcare professional” (often a nurse or physical therapist) makes a recommendation based on what they “see” on the day, even though your condition may very. Even though you may have done nothing else for a week to have enough energy to attend, and will need to lie down for hours after. Even though you are terrified and running on adrenaline.
People in comas found fit for work may be an exception, but reports by consultants being ignored are not. People being denied help because they were able to read a magazine in the waiting room are not. People who have been suicidal are asked “why didn’t you kill yourself?” – that is not an exception, that is a standard question.
During my own assessment, I felt like my every move was being analysed. My assessor tried to hurry me down the hall, and I had to quash my instinct to politely comply and go faster than was comfortable, as I knew it would be noted on my report (it was).
I had my physical illnesses believed by my assessor. She did not believe I was affected by either my mental health problems or my autism, despite expert evidence and ongoing treatment. Her observations in a one hour assessment that I seemed “oriented and aware of where I was” overruled my diagnostic reports and my words – apparently, not knowing where you are is the only non-physical issue one can suffer from.
I got an award, but less than I felt it should have been. I was lucky. The volunteer from the CAB who helped with my claim and appreciated my complex issues, warned me strongly not to appeal, as you can’t appeal without risking the award you already have. I took his advice; I couldn’t face fighting for likely another year anyway.
And that is the problem. It is a fight. A system allegedly set up to discourage shirkers and fakers is making injured, sick and dying people spend time and energy they clearly don’t have beg, jump through hoops, read dozens of documents to prepare themselves and chase extra evidence from our thinly-stretched NHS.
You know who does have the time and energy to play this game? The tiny minority of claimants who are actually faking! When research, acting, ticking the right box, and being up for a lengthy battle matters more than what doctors say, it’s fairly clear that the truly disabled will lose out.
For those of us able to fight long enough to get to a tribunal, 70% of claimants are having the original decision overturned. In the vast majority of cases, an independent panel finds that the disabled person was denied their rightful benefit.
I want to be at uni. I want to be working or studying. I want to feel safe left alone with my own child. I want to be able to wonder around town occasionally without being unable to move for days afterwards. I want to be able to concentrate on trying to make myself well. I can’t do that while fighting for money to live on and support my needs.
I’d love you to think about me, and the thousands like me when you vote. I’d love you to think what system you’d like to be there if you lost your health tomorrow.