18/12/2014 02:43 GMT | Updated 16/02/2015 05:59 GMT

Fighting For Your Rights

Different countries around the world with diverse health schemes, adhere to set rules and regulations. Learning how the system works where you live, and finding out what you're entitled to, are just the first steps, in what feels like a voyage into uncharted waters. Life is difficult enough living with chronic disease, and yet often I've heard others in similar situations, the frustration and hoops they have to jump through (figuratively speaking of course) in fighting for their rights, through a labyrinth of unhelpful clerks and officials, not forgetting a sea of paperwork where nothing goes smoothly. Antiquated systems and outdated policies protect the health scheme, ensuring fraudulent cases don't slip by undetected. Understandably and without doubt, these procedures have to exist. However, these very same laws that leave no room for flexibility, can make it incredibly difficult for genuine cases to receive assistance, for which they are rightfully eligible.

When very ill, it takes great strength and energy to stand up for your rights, to pursue and receive what you are lawfully entitled to. Often it is the case that someone chronically ill, can barely make a phone call, let alone speak up for themselves; being passed from one person to another on the phone, made to repeat one's story yet again, until finally forwarded to the right department. Even then, it's an uphill struggle to receive any relevant forms by fax or e-mail, fill in countless questions, that require your doctor, a nurse and sometimes other officials to sign and stamp, before being submitted. For someone healthy, all this must sound very trivial, but anyone who is chronically ill, I'm sure understands only too well the hardships in dealing with the system.

It seems ironic and just plain cruel to put chronic patients through so much, making them literally fight for their rights. Sometimes I barely have strength to talk on the phone, let alone physically get to an office to sort out problematic paperwork. Dealing with authorities is so exhausting, and beyond my capabilities in my present state, I almost give up before I have even begun.

I've been told I'm the personification of an English lady; polite, well-mannered and respectful. Speaking on the phone recently with a health official who showed no compassion or understanding of my situation, I became incensed and so angry, I barely recognised myself, a side of me rarely ever seen. In other words, I can only be pushed so far, and press the right button, my restraints burst open and all fury pours forth.

I am still incensed from the lack of empathy and unhelpful manner with which I was dealt. It is rare for me to complain, but when pushed to the limit, my shock turned to anger. I was passed from clerk to clerk, told incorrect information, and basically given the run around for several months, over something so trivial, it should have been dealt with efficiently in a single phone call.

My life is far from a picnic, born with Gaucher disease (a rare genetic disorder), and dealt a huge life changing blow eight years ago, when diagnosed with young-onset Parkinson's at the age of 44. I think it's fair to say I have enough to contend with, yet I was expected to cope, sorting out paperwork and struggling with unwarranted bureaucracy.

I was getting absolutely nowhere trying to handle a particular problem by myself, but a thoughtful neighbour, saw I was in need of assistance, and kindly stepped in to help me. Thankfully with her much appreciated help, many phone calls, faxes and e-mails, the issue was finally sorted out. Not only was this upsetting experience draining, causing me unnecessary stress, it resulted in my neighbour's involvement, taking precious time that she should have spent with her young children. I wonder how much time and money was wasted by the health fund's office over this saga. Do they realise what condition I'm in, how poorly they treated me and the anxiety caused by their incompetence actually exacerbated the Parkinson's? Do they even care? Sadly, I think not! Unfortunately I believe this problem is universal, so if you are chronically ill, and find yourself in a similar situation, I highly recommend having an advocate to speak on your behalf.