Thursday, 13 January 2011

Exceptionality

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...

On a globo-social level, Rizwan has most recently been involved in projects in Malaysia, dealing directly with youth involvement in political change, anti-trafficking organisations and ensuring women's rights and participation in urban development. On the home front, he is resting up before the next leg of his journey into the globally connected social movements in Africa. And, more immediately, awaiting a very special arrival! He writes all about his Angel here in his own blog...

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!

10 comments:

Lorenzo — Alchemist's Pillow said...

Apart from saying what your readers and blog friends will quickly tell you, that you are an exceptionally gifted, sensitive, caring and inspiring soul, I wanted to ask: what kind of exceptionality are they referring to? Is it purely based on medical/health parameters and criteria? Or are there other factors, like family, social, work situations?

What a maddeningly frustrating dilemma it must be to have to convey one's exceptionality. I want to rail against the injustice of this, but understand that such cruel choices are a product of this being an innovative treatment that will initially be made available only to a few, but surely they should have a system where the 'experts' who evaluate the 'exceptionality' must solicit the pertinent information without the candidates being made to feel that they must show they are exceptional.

Either way, I wish you the best of luck on this, Shaista.

Lydia said...

If you do not possess extreme exceptionality, then no one does.

I well remember that song and think you worked it into your post in a brilliant way. Woof Woof!

Shaista said...

@Lorenzo - exceptionality based on purely medical, clinical evidence. Which is difficult because this disease affects the body first, bloodwork later. But my consultant suggested I start collecting 'quality of life' data too, just in case the system begins to see patients holistically. Here's hoping right?
Incidentally, Immunoglobulins have been around for over a decade, but it's like a national well-kept secret! Which is why I'm writing about it :)
@Lydia - bless you, thankyou!

Sherry Blue Sky said...

Shaista, thank you so much for keeping us posted and aware, and for being a voice for the thousands of others out there who have perhaps been made to feel too discouraged or powerless to speak.

Tomorrow I am going to go get a Believe rock and will send it to you (hopefully not via sea this time, hee hee!)

You must BELIEVE what we all know, and have known from the first of your words we ever read: YOU ARE EXCEPTIONAL. Life is better for having you in it, we are better for knowing you. So in your quality of life data, please let them know you have a blog and an international readership who care very much about you, into whose lives your brightness shines the light of inspiration. You are as exceptional as your wonderful brother.

I have kids whom the medical establishment has made feel insignificant and/or labelled and slotted into "appropriate boxes", ignoring the very real fact of their lives on this planet as human beings. When one gets a medical practictioner who is poorly endowed with humanitarian qualities (to word it as kindly as possible), it does have a negative impact. I am glad you have grown years beyond his clutches.

Now is not the time to be humble, and we do love your humility. You must let them know how badly you want this chance at life and treatment,and how your "quality of life" will increase exponentially if given the chance at the treatment.

You write so well, Shaista. Write it now. And then BELIEVE.

If you need letters of support as to your importance in this community, let us know. I can get a letter to you express mail in - hopefully - days:)

Cloudia said...

You are a jewel of immense value!
it is our society that is beggarly.

You flourish you fly.

You inspire and lift me.



Aloha from Waikiki

Comfort Spiral

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Terresa said...

I vote for your treatment, as your exceptionality goes without question. Is there a petition I can pass around in blogland for all the number crunchers (that what we call them, you know, office people/administrators) to prove it? Please let me know.

xoxoxo (as always),
Terresa

Marion said...

I hope with all my heart that you will be allowed the treatment and that you will be helped

Ruth said...

I can understand your reticence to declare your own exceptionality. I would feel the same, I think. I hope this will come to be for you.

I had a student yesterday who missed much of her semester in the fall because of her mother's lupus. I listened with rapt attention, thinking of you the whole time. I was grateful for knowing you and having a more informed sympathy for the student and her mother.

Oya's Daughter said...

You've got an amazing blog and I just recently started following. If you have the spoons, it would be lovely if you could participate in "One Month Before Heartbreak" - protesting the changes to DLA which are coming down very quietly through Parliament. Today is the last day and I know you might not get to it, but if you can, brilliant.

Cheers

http://onemonthbeforeheartbreak.blogspot.com/

Jeanne-ming said...

I ditto all the comments. if you are not exceptional, then no one is.

So I send my exceptional love for you.

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