Wednesday, 5 September 2012

Aaaarrrgghhhh (or words to that effect)

I have Sarcoidosis (oh, lucky me).  I also, as a result of the Sarc, have Fibromyalgia and (because of the aforementioned Sarc or for some completely different reason, such as a trapped nerve or just because my body feels like being cussed) I also have bursitis.  In both shoulders.  Also severe upper back pain - and I mean severe.

I've just received yet another letter from the hospital asking me if I still want an appointment with the neurologist.  This is the appointment I was initially put down for NINE months ago.  I've asked my Sarc specialist, my orthopaedic chappy, my GP and the physiotherapist to nudge (ie give a kick up the posterior) to the Neurology department but still they send me these damn letters instead of an appointment.  I call them the, 'haven't you died yet,' letters.  I've had a few of them.  The fact that this one has just turned up means I shall shortly have it's brother - do I still want the rheumatology appointment (no, I just can't be bothered to tell them I've decided pain is a wonderful thing and I love it).

Now, don't get me wrong - I think the NHS is great.  Or at least I think the theory was great.  I love theories.  Unfortunately reality often bears no relation to them whatsoever.  Personally I think Bevan is turning in his grave at what has happened to his great idea.  Money wasted left, right and centre on administration and piddling little things (sorry, but gastric bands for prisoners isn't my idea of a good use of resources) whilst things that are actually needed - whistle for them.  We're still waiting for the wheelchair that was ordered for my mother weeks (and weeks) ago.  

I also don't understand the myopia of the NHS.  Well, I do (ie short-term cost saving) but it is crazy in reality.  I've had migraines now since I've been in single figures (oh, the joys of being female).  They are regular little bu****s (inasmuchas they happen every damn month, if not week) and tenacious.  Sometimes they're really, really bad - a humdinger.  The worst humdingers are when I am vomiting every 15-20 minutes which means keeping meds down is impossible.  It used to be that the doc would (eventually) come out, give one a jab for the nausea and then one could take copious medicines and retire, stage left.  Nowadays they don't do that.  They send you into hospital.  I kid you not.  The last time I was in hospital (for me, not Mark) was for a migraine.  What a waste of a bed!

The annoying thing is that there are possible alternatives out there.  I've been told a lot of my ailments probably have a stress element (migraine, asthma, eczema, IBS etc etc) and it has been suggested I try hypnosis.  Whilst I don't think it would work I'd be willing to give it a try.  But, of course, it's not available on the NHS and there is no way I could afford it myself.

There's also botox (for migraines, not my furrowed brow, although if there was a knock-on effect I wouldn't mind) but that's on trial and you can bet your bottom (or top) dollar that, even though I plan on asking the neurologist (if I get to see them before I die), I won't be put on that waiting list either.  And, of course, there's this new gadget that, to my innocent and highly untechnical brain sounds like a TENS machine for the head.  When I was working I lost quite a few days due to migraines and the medications I take - well I know the Maxalt Melt costs at the very least a forearm if not the whole limb.  I get through at least six a month (that's eking them out).  It adds up.  I have no doubt whatsoever that my migraine medication has, in this year alone, far exceeded the cost of any of the above alternatives.  But, of course, the NHS (or the bods that run it) can't see that.

The sad thing is that I'm not alone.  I may not know people in a similar situation but they're out there.  It's frustrating.  These options exist.  They aren't hideously expensive - not when one compares them to the cost of a year's medications - yet they languish, saved for those who have the spare cash to try them.  This isn't what Bevan wanted.  It isn't what the NHS was created for and it sure as hell isn't why I've paid into it all my working life.  

But what do I know?  I'm just the patient.  An impatient one, but who cares?

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