How are you meant to jump (or hop) through so many hoops on one leg and an exhausted body?
Everyone (well lots and lots of people) seem to think that having a physical disability, that you have all the time and energy to jump through all the hoops, they want to throw in front of you! By the time, you've showered and dressed, you're ready to go back to bed!
The hoops are everywhere, in every part of our lives as disabled individuals; I am talking about all the ones you have to jump through (or hop in my case) to prove you are actually disabled; even though specialists have diagnosed you with a debilitating condition.
Take my local County Council as a primary example of hopping; it is very clear that nobody is or wants to talk to each other or other departments. I have just renewed my blue badge (they are issued every 3 years), the department that issues them requested further information on my amputation (as if it has anything to do with them anyway, they are not medical specialists)! This is a renewal based on the most painful condition in the world, debilitating and with no cure in sight; therefore no chance of things having gotten better. Who knows why they need this information on top of my latest PIP award letter; and my mobility has deteriorated in the past 3 years and that is without getting legless!
If this department had spoken to the other departments (or even someone in the same department) within the council and same building, they would be known that they issued me a Disabled bus pass about 3 months ago, or that they painted me a Disable parking bay, outside my home!
They could have spoken to Adult Social Services, if they had they would have found out that I have had a lot of involvement from them over the past 3.5 years. Adult Services have provided me with lots of different aids to make my life a bit easier including installing grip rails and building a wooden frame to raise my bed significantly.
It's the same with PIP (Personal Independent Payment)... lots and lots of hoop hopping even though they have your specialists diagnoses, medical records, medications list, aids, and so on and on; they still make you go round in circles, trying to make out that it is all in your head and you've made it all up! It would help, if you could get a face to face assessment instead of them making things up and assumptions without seeing you and having no knowledge of your conditions. If PIP had spoken to another (possibly the same) department within DWP (Department for Work and Pensions), they would have even more evidence having had a face to face assessment over 3.5 years ago for Limited Work Capacity. We all know this will never happen!
The GP also said that is a a new condition, being only about 5 years of diagnosing people with CRPS, so I was one of the first and most healthcare professionals haven't even heard of it, let alone understand the conditions and its impacts on patients.
I am sure there will be more hoops to jump (hop) through, it would make people who live with chronic, debilitating pain and subsequent exhaustion, lives so much ease and less energy zapping if departments talked to each other, believe the medical evidence provided and understanding how exhausting their hoop jumping is.
We can all live in hope that one day this will happen, but I don't know about you, I'm not holding my breath anytime soon!
Keep jumping or hopping those loops and hoops!
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