My son, Gavin, (in his early 30's now) will understand your frustration with this much better than I could.
He was told a while back that there was treatment available in the UK for his Diabetes related eye problem but the treatment wasn't available at that time on the NHS for free.
He then had to wait until the funding WAS available while the eye problem deteriorated.
My aunt had to got private to get the same treatment....12 monthly injections costing £12,000 altogether...eek!