Recorded this one a while ago, forgot to post it, ironically
Medicals...: Recorded this one a while ago, forgot... - Headway
Medicals...
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Spot on, Andy. No acknowledgement of the 'invisible' symptoms. I think this is where people fall foul of the system, esp. PIP and ESA. Sure you can carry an apple across the room and place it on a surface but if I were to then remove the apple and asked you a while later if you had carried the apple across and left it on the surface, without evidence, would you remember doing it ? Imagine using the wrong word, which totally changes the meaning of an important issue and sets off repercussions. Assessors need to think about how chaotic and potentially dangerous these issues could be when translated to the workplace.
Even though I am clearly physically disabled at this point, I still find myself in the position of having to justify or 'prove' my memory, concentration and slowed thought processing in many situations. x
I had an assessor who when trying to interview me, got fed up fast and suggested it would be easier if she asked my husband the questions instead...so I asked her to explain how that would be an assessment of MY abilities...
Assessor 0 - Me 1 LOL
"Can I sit down, well, yes, I have legs, and an arse." Chuckling at that.
Similar to my assessment, and, no doubt thousands of others, although my 'assessor' took more interest than I deemed healthy in whether I'd ever fallen off the toilet. (I have fallen off the toilet since the assessment, might make another application, to see if I score the points for that, BUT because I don't fall off the toilet every day...)
I wrote a seething Mandatory Reconsideration request, and had a response that did nothing more than re-hash the original "You reported... I have decided..." It's the linguistic pedant in me that FUMES at the 'Mandatory' phrase, as if they expect people to 'fail' (or pass) the initial assessment.
Sitting here, having been wide awake since 2am, because that's what my damaged brain does now, with letters for appointments at four different departments of two different hospitals, two of which overlap, so I'll have to reschedule one... Obviously, I can't re-apply for PIP 'yet', because the get-out clause will be that I haven't had the appointments yet, maybe there's a silver bullet in one of them that will suddenly mean I no longer have a Brain Injury, that I no longer have bits of metal in my brain, where there used to just be healthy tissue?
The system is crooked, we turn up in matching shoes, and use every iota of functional and cognitive capacity we have to try to explain ourselves, in the same way we 'get through' every single day. Having a Brain Injury forces us to do that, to double-check, and over-process, it's not 'just' anything any more, but the inevitable fatigue is usually behind closed doors, because we know we can't have a little lie down in the supermarket aisle, or scream at the people who put their shopping on bus-seats.
Well done on the continued awareness-raising, Andy, our superficial functionality is a double-edged sword. (Now having random thoughts of a 'Purge'-type day, where all the Brain Injured people just STOP 'acting normal'...)
Ha ha ha now that made me chuckle too Baron... Well done. Can I sit down?
What is it about this invisible injury that makes people so unaware of the symptoms we go through and the lack of understanding. It has been suggested that we the injured have to be the educators in this but we can only educate the willing participants that are teachable. God its a struggle sometimes especially when your parents are the unteachable participants...
Have a great Sunday People. Nick Xx
We're so conditioned to NOT reply "Yes, I have a brain injury, I'm not a f**king moron...", that's where we don't tick the 'unable to interact without psychological distress' box, even though all manner of things are now immeasurably distressing sometimes. That's what's hitting me now, being off work, and not putting that interaction-practice in every day, I'm not sure how I'm going to get back to it- the ex brought the boy around for half an hour, and I was struggling to manage whole sentences. The managing-whole-sentences was how I passed/failed the PIP assessment, but, if I re-sat it in this state, I'm entirely sure I'd pass/fail through not being able to relay the complexity of the condition- damned if we do, damned if we don't.
I'm in one of my low-phases, they pass, but I need to NOT get myself riled at all the 'other' medical conditions that draw headlines and attention and campaigns, any more than I would have gotten annoyed that my arthritis didn't 'count' as much as another ailment before the BI.
I accept that the system is there to disprove some, but 'we' have actual, documented and evidenced brain injuries, it's just as you say, Nick, and Andy, that nobody really seems to know what to do with us.
(Spamming the BBC 'health' news daily with anything I can link to 'similar to BI', I know the BBC isn't entirely impartial, but I'm loathe to go to a women's-interest magazine with "PIP failures almost cost a child her life.")
I've sent seven or eight of my films to... BBC One, Two and Three, BBC Ouch, BBC Disability and every regional BBC station on the network. Thus far not one has even had the courtesy to to reply. NOT ONE
That's disheartening, Andy. Your videos are real, they're easy to digest, and they show the massive range of difficulties 'we' face every day, that the wider population just don't understand, because they're not living in it. I'm not sure how to get the awareness 'out there', but it is needed, desperately. I would be terrible on video, so I'm just going to keep typing away while I'm 'off' work, there was an article on a Liverpool Brain and Spinal Injuries unit being declared 'outstanding' last week- I just happen to live in the wrong postcode, and ended up giving my GP surgery my discharge note to photocopy, because the hospital hadn't faxed theirs. Need to book in at the surgery again this week, to extend my sick-note, and NOT see the GP who refers to my haemorrhage as 'your bleed', or the one who initially said he wouldn't extend my note because "Anyone would find that stressful, I can't sign you off for that." (Hello, you're acknowledging that I'm under some pretty intense stress, and you've just checked your computer for the date of my last BRAIN SURGERY, it wasn't an ingrowing toe-nail, mate.)
Hey-ho, continuing my on-going mission to collect a 'stamp' from every department in two different hospitals, and not SCREAM if the lights are blinky, or it smells funny...
I think i watched this at the wrong time for me, I am currently being reassessed on two claims & my (usually high) stress levels are now through the ceiling. Part of me wonders how anyone ever manages to make a false claim, the forms are so complicated & the questions subtly worded to confuse & trip you up. It is difficult enough to make a genuine claim!
Best wishes
CCxx
You'll be fine. Stand up for yourself and forcibly state your claim. They DO listen, eventually.
No I haven't, my GP is on board in case they write to her though. We've given her a copy of my claim so she knows exactly how i'm affected day & night, we've done the same with the Rehab team in hope they can answer fully about me rather than the teary mess I am in front of them.