I decided this year to try to change hospitals from Sydney Eye Hospital to Westmead Eye Hospital.  Nothing is ever easy but finally I was accepted at Westmead Glaucoma Clinic and had my first visit there in June. 

You would think that Sydney Eye Hospital would have sent my files on but no; it’s all a big secret for some strange reason so very little was forwarded on.  My first visit ended up lasting almost 6 hours and by the end of those hours I could barely see to get out of the hospital after all the drops and tests.  Fortunately my darling daughter went with me and sat out all the hours of waiting and drove me home.  There was no way I could have driven as all the headlights on the cars were like 4 storey buildings – just awesome and very scary.

All of the tests I had previously had at Sydney Eye Hospital were repeated because of the scanty report that was forwarded on regarding my situation and prognosis.  To say I wasn’t happy is putting it mildly.  I was totally frustrated, annoyed and the worst of my Scorpio nature was beginning to rear its ugly head.  I left there feeling disoriented and disappointed with very sore eyes.

Certain decisions were made by the specialist at Westmead that evening before I left the clinic.  He gave directions for his staff to attempt to gain whatever further information they could from Sydney Eye Hospital and he also directed them to gain access to the authority I had for my drops so I could pick them up from Westmead Hospital instead of having to make the long trek to the city.  I was told to ring in a few weeks if I hadn’t heard from the hospital to track down where things stood. 

The specialist explained to me that he wasn’t happy with my pressure readings and he wanted me to trial a drug not available in Australia but that he believed would work well in my case.  He said that he was very concerned about my eyesight and that something further needed to be done to try and halt the loss of sight before it was too late.  The drops are Tartrate (Alphagan P. preservative free).  For me to be able to use the drops on a trial basis once again an authority had to come from Canberra (Federal Government) so papers were signed, supposedly to be sent away for the approval. I was told that the drops would arrive by mail at my home address at no cost to me.

For the next two months I tried on many occasions to find out from the hospital what had happened to my being able to pick up my drops that I was already using from Westmead and why I hadn’t received the new drops by mail.  The only way I got any action was to send a fax requesting information and help. 

In the interim I needed more drops and had to go back to Sydney Hospital for them because I had no other option.  Even though I made a call a few days before I wanted to go pick up the drops, when I arrived and handed in my prescription I was told my authority had run out so I couldn’t have any drops.  To say I was amazed and dismayed is putting it lightly as no mention was made of this issue when I rang to arrange to pick up the drops and I was told they had them there for me. 

So I had to  go into the Sydney Eye Hospital Glaucoma Clinic and find someone who could arrange for a doctor to sign the authority forms for me.  This authority had nothing at all to do with me really, it was up to the hospital to ensure that it was kept up to date considering I had to use the drops as a forever thing.  They should have kept details of the renewal date and done the paperwork so it was always up to date.  I didn't have to sign any of the papers and yet it became my responsibility to go and find someone to sign them.  Not good enough!

Then I trudged back to the pharmacy and begged for some drops. It appeared that sometime between the time I rang to arrange to pick up the drops and the day I turned up the drops they told me they had there for me had disappeared!  How kind of them though to finally agree to give me enough to last me 2 weeks.  Apparently the fact I had been buying the drops there under a Government authority for over a year meant little once the authority ran out.  Suddenly I was an unknown.

Anyhow I returned to Sydney Hospital in another two weeks to pick up more drops only to be told that they had not turned up - something had gone wrong with the delivery.  Once again I was given enough to last me a few days and I had to make another trip into the city to pick up the drops.  However I managed to arrange for them to be posted to me when they turned up and I paid in advance for the supply.  They did finally turn up and I had just enough then to last me until my next clinic visit early February 2009.  The prescription had run out though so I couldn't get any further drops without a new prescription.  The neverending battle continued.

Meanwhile when all this drama was unfolding I was still trying to find out from Westmead what was happening about my drops.  I still hadn’t had an answer by my next Clinic visit on 10 October and when I demanded to know what was going on that day I was told a fax had been sent in June with the authority for Government approval to bring the drugs into Australia but no one had bothered to check it had been received and it obviously hadn’t because there was no authority in my file.  This was for the Alphagan P drops.  When I queried about the Sydney Eye Hospital transfer of authority for my other drops I found out nothing had happened with regard to that either.  I’m sure after reading this anyone interested enough to still be around can probably understand how absolutely at the end of my rope I was with the whole mess. 

Eventually, in November, I received papers to sign that more or less let the hospital off the hook for any responsibility while I trialled the new drops.  I read about the side effects and I read the agreement I was to sign and ended up writing to the doctor saying I didn’t like what I had read and therefore wouldn’t sign the papers.  He wrote back fairly quickly which surprised me no end and again stressed how concerned he was with the pressure in my eyes and asked if I would consider using the new drops in my right eye, which isn’t affected by keratitis and corneal ulcers. 

I thought it over carefully and decided that I really had only a couple of options – do as the specialist wanted or take my chances by staying with the drops I was using and facing the very real possibility of losing my sight even further.  So I signed the agreement and sent it back. 

I heard nothing for a few weeks so once again I wrote to the doctor and told him how stressed I was about the total farce of trying to get my drops from Westmead.  I almost begged him to send me a prescription so I could at least go to Sydney Hospital and get my normal drops because by this time my prescription was out of date and I was terrified I would run out before the next clinic.  I asked him what had happened about the new drops, how was I supposed to obtain them and how was I supposed to use them?  He finally wrote back and told me that he had left a prescription at the pharmacy for the drops I had been getting from Sydney Eye Hospital and a script for the new drops and for me to go and pick them up.

So, last week my son dropped me off at the outpatients’ pharmacy at Westmead Hospital and I waited my turn only to find out that the doctor had only left a script for one of my existing drops and a script for the new drops!  Far out, how hard can it be for them to get it right?  At least I have 2 drops to use and enough of the other one to last until my next clinic visit.  Makes me wonder just how concerned anyone except me is about my eyesight.

I won’t know if the new drops are making any difference until February when I have the pressure checked again.  I do know that the Alphagan P drop in my right eye is causing me pain and I’m not sure if it’s an eye ache or a headache or both.  But it is a new pain so I’ll have to take note of it and make sure I report it next visit.

I wonder how many other people have so much frustration thrust upon them when they deal with Government medical clinics?  I’m not a pensioner yet either so I’m not on welfare.  I pay my taxes, I have private health cover and I also pay a Medicare levy every year out of my salary so I have this mindset that says I should be treated a bit better.  I also pay whatever the full cost for drugs is from the pharmacy, as I don’t have a health card.

Ah well never mind such is life.  I work for the Government too but I can’t get my mind around how inept some of these departments are or how dismissive they are of the problems their clients suffer because of their inability to administer their workload adequately and professionally.

My eyesight isn’t improving and never will.  I am finding it harder now to see in the dark and dull days are like late afternoon (dusk) to me.  Where once I had the curtains drawn because of the glare I am now opening them to find some extra light.  I can’t read in anything but good light and that is a total frustration.  But at least I can still see to read so I should stop whining.  Anyone with a similar/same eye problem will know how I feel though.  It’s totally scary and restrictive to live this way and to know that you no longer can see what you once could with ease.

To anyone reading this who suffers from glaucoma, my heart goes out to you, as I understand only too well how you feel and how hard at times it can be to cope with what was once so easy. 

Take care.