Lost in the system

Some of the most prevalent memories of my childhood are made up of various hospital and physio appointments. Sitting in waiting rooms being prodded and poked, serial plaster casting and days off from school all became my norm. As I grew older I noticed that these appointments became less frequent, the physio stopped and my mobility deteriorated. Strangely at the age of 19 I was rediscovered. I was lucky, I had an uncle who took a keen interest in my mobility and wanted to see what could be done to improve my situation. Until this point I hadn’t undergone any surgery as mum thought it was best to steer clear of any long term intervention (something that I now know to be rear in cases of CP).

 

After a few redirected letters I was referred to a brilliant consultant (who I still see to this day). After a series of tests, discussions and visits, he decided that surgery would be necessary and scheduled me in for the summer just after my graduation. The operation was a success and I continued to progress with a regular physio, hydrotherapy until I reached a plateau. I was referred to my local gym and was then expected to continue alone. As time went by my gym sessions stopped and mobility generally became more difficult although I struggled on, until one day after experiencing several falls in quick succession. I’d cut my hands and knees and was helped in side by my cousin. I still remember this day so vividly people around me had noticed this decline, I think I did too, although I just put it to the back of my mind. I had to do something and decided to book an appointment with my doctor who later went on to refer me to a clinic for physio.

 

This got me thinking how did I get lost in the system? I went from regular meetings with specialists and physiotherapist to nothing. How did this happen? The consultant I now see for my CP runs an ‘adult clinic’ as there isn’t anyone that caters for this market. What do they think happens to all of the cripples, are we packaged with a use by date that fails to exceed our teenage years?