"NHS delay has left me with impaired sight"
About: Moorfields Eye Hospital (City Road) Moorfields Eye Hospital (City Road) London EC1V 2PD
Posted by Expectations_uk (as ),
At 30 years old, I'm a bit younger than your usual sufferer of Wet Macular Degeneration. Apparently it's my short sight that's done it.
5 years ago I noticed straight lines weren't straight any more when I looked out of my left eye. I went to an eye clinic, after a day's worth of tests and disbelieving looks they diagnosed me with macular degeneration, and put me on a therapy trial which while it didn't make my sight better, at least stopped it getting worse.
Three and a half weeks ago, it happened again. Only this time instead of squiggly lines, the entire central vision in my left eye had... disappeared. I went to Moorfields hospital the very next day (after a five hour drive home from Cornwall with no left vision), knowing that quick action was necessary. They gave me a specialist appointment for the next week, which in NHS terms is quick enough, and at that appointment I got the bad news: the drug you need is not approved for NHS use in your case, we need to ask Haringey PCT for permission, and it would cost you £750 if you went private. The NHS route will take three weeks.
Unable to afford the £750 for urgent treatment, I waited for those three weeks. Yesterday, I found out that during the wait, the bleed at the back of my retina had entirely dried up forming a permanent scar and leaving me, also permanently, with no central vision in that eye. The treatment I had been prescribed was now next to useless.
Why wasn't there any emergency protocol in place for this kind of situation? I was told yesterday that it's because no-one knows very much about the condition. How is that a reason to delay treatment that could have restored some of my sight?
As much as I support the NHS, today I am desperately disappointed by their callously bureaucratic disregard for my eyesight.