“Getting support for your disabilities is a full-time job you have to fit around being disabled.”
That is something my friend Richard told me this morning, after I had vented a bit about the near-daily phone call to the DWP I’d just finished with. Having dealt with serious illness himself, he knows how exhausting it can be to keep up with forms, certificates, letters, phone calls.
This has been the last 9 months of my life, ever since I applied for ESA and PIP to help deal with disability. The minute I had my diagnosis in hand last year I applied for help. I was no longer able to work part-time in pubs, as it’s not very useful when you can’t lift things heavier than a full pint, climb stairs, or unscrew beer taps without dislocating a wrist. Eventually even part-time studying was impossible. Right now I would describe myself as a full-time cripple. Every day is a measured exercise in trying not to be in pain, trying not to injure myself. A week where I have no appointments in one hospital or other, or at my long-suffering GP’s is a rarity. And then there’s the DWP.
It’s my second job. I’m moonlighting as a benefits claimant. Every month I pick up my medical certificate for ESA, get it sent internally via the Job Centre, and wait with my heart in my mouth to see if it’s arrived at the DWP HQ in time. Any lateness will result in a sanction, and when there’s only £72 odd to live on per week, it doesn’t leave you with an awful lot of excess to fall back on if this happens. The GP who signs the medical certificate is not always my primary GP, so with no knowledge of me they just pick the first thing off my medical records and the DWP don’t like it when my reason for being unable to work is “hypertension”. I’ll be doing that anxiety week until I’m finally called in for a Fitness To Work assessment, whenever that is. It’s easier to keep us in limbo than process our applications.
Then there’s the ongoing PIP appeal. I’m calling them daily at this point to find out why they haven’t sent the full medical report to me yet so I know what I’m appealing against (apparently you can’t just say “took all medical evidence and chucked it in the bin along with everything I had to say”).
Trying to prove your disability to a body that is determined to deny you access to support is exhausting and time-consuming. PIP is the gatekeeper to so many things. It took me literally months to get a Freedom Pass for transport from my local council because I didn’t have PIP yet (it was 9 months between my application and my assessment for PIP). The fact that many people may be seriously disabled but still not deemed worthy of PIP seems to escape the decision makers. Even when I fell three times in a fortnight on public transport, and reported this in my mobility assessment, it still took a letter from my GP to change their minds. After each phone call to the DWP I’m tired, flat. It’s mentally taxing, demoralising. I haven’t hung up the phone feeling optimistic in months, not since I first applied for ESA and PIP. I feel like a number, a process, that whoever’s on the end of the line is ticking boxes, filing my request onto a conveyor belt heading straight for a furnace. Staying focussed and not giving up is the hardest part of the job.
Reblogged this on Faloolar and commented:
I could not agree with this post more. I have been sending in my medical certificates, every two months, for so long that I’ve lost count of the time! It honestly feels like over two years, but my logic is telling me that’s just not possible… Except it probably is… I was awaiting my assessment when Nina first applied for PIP. It wasn’t even yet called PIP when I first put in my claim!
The thing is, I’m just too terrified to pick up the phone to find out what’s going on with it. I don’t want to find out that I’ll be turned down for help before I even get the assessment, and lose what little money they’re giving me at the moment…
Watch this space, I guess 😕
I feel your frustration love 😣 xxx
I have a friend with close EDS and know from her experience how true what you say is. If it isn’t keeping track of all her medical documentation for appointments, assessments etc, it is chasing up the agency her carers come from because they have messed up yet again. Or having to deal with people taking up all the disabled only parking bays despite them not being entitled to a blue badge. (often delivery drivers etc. If I lived closer, I know I would be round there a lot but my support is via a phone, text or facebook.
The thing I have difficulty getting through to most people is the fact there are no good days and bad days; there are crap days and slightly-less crap days.