Wednesday, 6 January 2010


Imagine if you will. we get a diagnosis for our little man. a rare genetic disorder, very little known about it blah blah blah. we fall into the system, learning our way, only dipping out to pay for consultants when we need to see the same person each time. and all along the way we don't know what is just L, what is 18p deletion and what is specific complaints unrelated to anything. all the eminent people we talk to are clear on that point.

The health insurance companies however are perfectly clear on what they think. they will happily insure us with a family policy, as long as we don't expect the little one to be covered. apparently he's not part of this family policy. his diagnosis means he's not allowed whatever we all are.

now we know how lucky we are to have the NHS in this country and we treasure it and do not abuse it. but it's almost unfathomable in its density of how to get what you need, who to ask, what's available...especially for something so rare and on the whole not life threatening most of the time. I reserve the right to try to ease the system on the NHS and take advantage of our private cover to see the same paediatrician every time, to have someone who knows everything we know and can add their experience to it. not to have to start from scratch every single appointment.

if they exclude my son, then I don't want to be part of what they are selling. I want to stop living in fear and that's exactly what Insurance is. selling fear to people scared of what may happen. but it's not just for me this problem lies.

So beware, because if you become ill you will long for a diagnosis, and medical science means we're so much better at getting those answers and labels. in fact without those diagnoses you often won't get what you need in treatment and support. But when that label comes, you are suddenly moved out of normal society for ever in the world of insurance. If it's on your records, anywhere, written down, diabetes, genetic disorder, cancer, anything that won't just go away, you move sideways. for good.

I don't want a policy that doesn't want my baby. I don't want anything that tells him that he's not allowed what everyone else can have. that's the one thing I want to teach him and am determined to teach to everyone around us.

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