Last summer I went to the GP with a few health concerns. She did a brief exam, heard the phrase “rare genetic disorder” and promptly wrote a referral to send me along to the breast clinic at the teaching hospital.
When the referral went through, that clinic noted the diagnosis of a “rare genetic disorder” and redirected me to Medical Genetics without first extending the courtesy of an exam, let alone a conversation.
I wrote a letter disputing the assessment, since I wanted to be seen by a breast cancer expert for a routine check. I’m fully aware of the risks and symptoms associated with my primary diagnosis, and checking in with my geneticist pals would not be illuminating given that I had symptoms rather than questions.
My main concern, which proved true, was that routing through Medical Genetics would extend the whole diagnostic process a dangerously long time. If the actual symptoms had been evaluated, I could have been in and out within weeks.
Instead, thirteen months elapsed before I was allocated an appointment with the genetics clinic.
Within three minutes the geneticist, baffled, pointed out that I should have been seen in the breast clinic. When I explained the efforts I had made to go there first she shook her head and promised to sort it out.
There is a a great deal of legitimate controversy about breast cancer screening, and I am considered too young for mammography in this country. Beyond that, I have already exceeded the safe lifetime dosage of radiation, so it isn’t like I am begging for more exposure to something that could kill me in the long run.
I just wanted to have a properly trained specialist look at my body, evaluate the concerns, and advise on an appropriate protocol for future checks. My GP is simply not qualified, but more importantly, not interested. If I will be routinely kicked to speciality clinics for average care, all that I ask is to be sent to the right place.
Having said all that, I remain astonished by the professionalism, compassion, and quality of care once I actually get the appointments.
The principle of rationing is effective and smart. I like knowing that, even if the system is slow, it does move along… and everyone gets the same access to services.
I doubt that my symptoms will result in yet another cancer diagnosis, partly because I have a superstitious belief that it would be unfair. I have already had more than my share.
But if I am wrong, will this one be the one that gets me? Something will, inevitably – I am not long for the world, not just because of the genetic disorder but also because of the treatments that have kept me ticking so far.
The larger point is: if I am diagnosed, what then? I have no support, no network or community or anything at all in the UK aside from a few friends busy with their own lives, and the children I produced – one too young and sensitive to cope, the other too old and adventurous to be constrained.
If I were still in the NW (or SF, or NYC) this would be different, and I would know that a huge group of people would swoop in to help.
In all of those places this would also be the corollary: I would not have appropriate health insurance, access to the best doctors, enough money to take the edge off the rest.
Life is a series of compromises and this is why I live in Europe – I believe, emphatically, in paying whatever is necessary to build a durable system of health care that benefits everyone. Not for selfish reasons but rather because I fundamentally understand what if feels like to go without.
The fact that I have abdicated everything else my heart desires is entirely beside the point.