I find I’m often asked to take part in trials because I seem to respond well to treatments and I’m articulate enough to tell people what’s going on.
There are Pro’s and Con’s to this.
The simple ones being I get to do things I can’t afford and aren’t available through the public medical system. The down side is, I get given less than spectacular equipment that helps them get the results, ongoing funding things they need after lying to me about all the great things they will do/give me.
All while sabotaging me from getting what I need. Case in point, I was part of a Botox trial to stretch my calf muscles and improve my walking and fix my hyper-extension, so in the time I wouldn’t need a knee replacement.
I was told I’d be put in a cast and if I managed to not fall over, they’d send me home. I’d be recast after a week in a slightly more uncomfortable position (calf to toes) and maybe again for a 3rd and 4th week. During the 1st and 2nd week I left the hospital in self-funded taxi’s (taxi’s I couldn’t afford) and went back to my neighbourhood to appointments I couldn’t live without.
I did get good coffee.
In hospital, I was bullied and not given pain meds my own GP prescribed me. I had supplied my own meds and while kept under lock and key, they refused to give them to me, adding to my stress.
But even after two weeks, they refused to let me go home. They insisted on keeping me in despite knowing it stressed me and I didn’t need to be there. They kept insisting to keep me in because they thought I’d get my cast wet if I went home. My cast got wet! EVERY SINGLE SHOWER I had in hospital.
Eventually, I think I growled sufficiently at a new doctor at the rounds and they set me free.
- Public hospitals: They have a body in a bed and they get funded!
- Every person their cat and dog came to visit me, access me, learn from me, all so they can tick their boxes and get more funding.
- They told me they’d send me home with shoes they would fund. I could no long wear my beloved shoes.
On the way home mum took me shopping for some temporary shoes, as there had been nothing but excuses. They eventually did fund me shoes that wore very quickly, I nearly twisted my ankle and it meant after 4 months needed replacing, I could get another pair funded for 12 months.
My mum paid for the cost expensive pair of shoes, I’ve ever owned and they are medically approved shoes. That I then had to find someone to reimburse my mum. She is not wealthy.
I still have my hyper-extension 2 years later.