In order to demonstrate exceptionality the patient must be significantly different from the reference population (i.e. all other patients with the same condition who do not fulfil the treatment criteria) and there must be good grounds to believe that this patient is likely to gain significantly more benefit from this intervention than might be expected for the average patient with that condition. The fact that the treatment might be efficacious for the patient is not, in itself, grounds for exceptionality. This in essence requires the clinician to make a case why this particular patient should be funded when others will not receive treatment.
from the First National Immunoglobulin Database Report (2008-2009)
So there you have it. Last night my consultant rang at 8pm and we finally had a chance to communicate. And of course I had to try to convey my exceptionality. This is not easy to do when your basic nature is to be humble enough to appreciate everything, and give blessings for the miracles that have already occurred. But I am at a crossroads now. Either I wimp out, bow myself weedily off the stage, or grow some muscle and become the advocate I needed myself to be when I was 18 and got lost in the NHS system. There was an overbearing consultant then, who behaved atrociously and scarred me (and my parents) for many long years. But scars lighten with time, and are no excuse to allow the behemoth of the national health service to intimidate or terrify me now. Especially since...
Exceptionality. It is easier to confer on others, harder to prove one's own. What is my worth in funding? This morning I had the all-important funding-dependent blood test to check the depletion levels of my B-cell lymphocytes. When I asked the consultant why this test was not done regularly on me, she said it costs £100. I did not know how to reply. Did she mean for me to be shocked? Do you remember that song, How much is that doggy in the window? The one with the waggly tail? That is what it has come down to for me. How much is that Shaista in the window? I do hope there's more to her tale. Woof woof!