Once you become ill or disabled you lose POWER. POWER over one thing you should have power over - your own body.
The dialogue might sound something like this:
me: " I need a powered wheelchair"
Occupational Therapist (OT): "yes, you do" (quite obvious - so agrees)
POWERED WHEELCHAIR (from hell) ARRIVES
me: "The wheelchair slides towards roads on sloping footpaths" (fishtails- dangerous)
OT; [tries it out on non-sloping path!] "seems ok" [NOTHING DONE]
me: "the wheelchair hurts my back, has no suspension, dreadful"
OT: SILENCE
me: "The wheelchair is causing me huge pain " [admission to hospital after trip out in wheelchair]
OT: SILENCE
me: "it really, really IS causing me huge pain, I'm on morphine" [spinal arthritis]
OT: SILENCE
me: "the wheelchair needs a tilt facility and headrest , I flop over when I'm tired" [muscle myopathy. i.e. degeneration]
OT: SILENCE
me: [Sobbing] "why are you leaving me with a crap wheelchair?"
OT: "I can't do anything Margaret" [helpless whinge on end of phone]
me: "it's up to YOU to fight for me"
OT: "You know I can't do anything" [distressed whinge on end of phone]
me: "why are the managers doing this?"
OT: [powerless-whinge 'sigh' end of phone]
The only resident in my house that likes my wheelchair!
I received the OT assessment on Friday. Not I hasten to add done by my local OT (whom I actually like - and feel sorry for), no, it was done by her manager. It makes interesting reading. She fails to acknowledge my Parkinson's diagnosis. Fails to acknowledge it's progressive. Fails to acknowledge I'm deaf "[Margaret] states she wears two hearing aids - no obvious deficit noticed", mmmmnnn I was wearing TWO HEARING AIDS, profoundly deaf one ear, severely deaf the other! have been since birth!
Then after all my complaints that I needed a wheelchair that gives more support to my back and head because I begin to 'flop' after a while with fatigue due to muscle myopathy, I find under 'head control'...a box to be ticked if head control is compromised by fatigue. Ah...I see...the assessments HAS got that down there...it's a VALID thing to assess, they SHOULD assess it! Great! wait, but,...hey "that's not right" ...she fails to tick that box.
Now THAT is interesting...
Why would she LEAVE out the very thing I'm saying ?
The reality is these alleged 'wheelchair & seating assessments' are no longer done to make sure the patient/client/service user/consumer receive what he/she needs. They are done deviously to PREVENT said people getting the wheelchairs we need.
I call this 'Manipulation of the facts'.
This senior OT manager made a decision that my wheelchair (above) was suitable yet I was saying it was causing huge pain, that I couldn't sit upright and that it was not acceptable. Nor did it conform to the World Health Organisation wheelchair standards.
But Co Wicklow choses to play their own tune. The Patient is never right - WE ARE!
But this is economic, political and nothing to do with doing a proper assessment.
This is Ireland - a country that has STILL NOT implemented the UN Human Rights Convention on disabled people. why...because they know HUMAN RIGHTS includes providing what is essential to our lives and they don't want to. PERIOD.
