Skip this post if you want updates on Vivian – this is more about the New Zealand medical system and how frustrating it is at times. I will be writing a Vivian update post tomorrow, I promise!
I have started the referral process for Vivian to be assessed by the Blind and Low Vision Education Network New Zealand (BLENNZ) for corticol vision impairment. I had no idea I could start this process myself and was waiting for the ophthalmologist to test Vivian for this but he didn’t. I would rather try and get a diagnosis early on so we can get some vision therapy in place sooner rather than later but he and our neurologist seem to think it’s far too early to test for this, although they have both said repeatedly that she will undoubtedly have some degree of it.
Before I realized I could self-refer Vivian, I’ve had to call the hospital’s eye specialist clinic at least a half a dozen times to get the notes/records sent to me from the appointment we had in February. They initially sent me a letter that they also sent to Vivian’s pediatrician, but I wanted another copy of her prescription for corrective lenses and any notes he took on the tests he preformed, so I could forward them on to BLENNZ with the referral form.
After a few more increasingly frustrating phone calls wanting to speak to the opthalmologist to ask why he didn’t test for CVI, I received a phone call from the opthalmologist that I sadly missed, stating that he would move up our follow-up appointment (originally set for 6 months away) and that he didn’t feel the need to test her eyes for CVI until she was 18 months old.
Well, the eye department couldn’t even produce this. They referred me on to patient information and said I would need to request the records from there (with a release form). I did this and they sent me the same letter I had already been sent… This lead to more emails between myself and patient information, who were waiting on the eye department to find the notes, because apparently I should have called the eye department for these. Hello? I did. Numerous times! They told me to call patient information!
Finally we end up with a new letter from the opthalmologist, addressed to me on 1 April…stating that there seems to be some question of whether Vivian actually needs corrective lenses (there is no question about this in my mind? I never ever insinuated that there was) and whether the corrective lenses would help with her strabismus. He then wrote that her prescription was +1.50 in each eye, which is very ‘weak’, and said that the lenses wouldn’t make a difference in the strabismus, so she didn’t need to wear them all the time if they were causing her any sensory issues.
Honestly, I think he wrote this off the top of his head, to cover his ass, and that he probably didn’t even take proper notes at our appointment. I got the optometrist to send over a copy of the prescription we’d brought in. He originally gave Vivian a prescription for +3.50 in each eye, a much stronger prescription than he is stating in the letter. The optometrist who fitted her glasses said she should wear her glasses “every waking moment”. What in the honest fudge – are we even talking about the same baby? I called the eye department again and informed them of my serious concerns about this incorrect information. Of course the opthalmologist is now on holiday until next week so we will not know if Vivian even has the correct prescription until he gets back. I’m assuming she does have the correct prescription and he was relying on memory to write this letter, as the eye department cannot find any further notes from the appointment.
Baffling. And ridiculous. And a complete waste of my time and their time. The good news is the BLENNZ Christchurch folks have contacted me and they’re coming to assess Vivian in May.
I honestly don’t know how parents are meant to navigate this system without giving up out of sheer frustration. If I wasn’t so persistent I really feel like not a lot would be done for Vivian. Super frustrating, and super tiring. It should not be this difficult.