“…As you can see, there is no movement of the eardrum on the right side….”, or what to do when the NHS screws you 6


 

I’m sitting in a very nice consulting room, in a very nice hospital, in a very nice area of London.  I have paid £150 for the privilege of 30 minutes of the time of the audiology scientist (as her name badge says) and her assistant.  I’m only understanding every other word – I feel like I should pay better attention, but I can’t.  My son, Alex, is happily playing on my lap, ready for anything.  He’s just had a tympanometry test.   We’re led into a play room, with a chair and tables in the center.  In each corner of the area is a set of speakers, and black boxes.  Alex sits between the two, playing.  When he hears a noise from the speakers, he turns his head toward the sound, and the box lights up.  There is an animatronic pig inside one, and a bunny inside another.  I think there was a lion at one point.  They keep doing the sounds, over and over, turning the volume up till he turns his head towards the running pig or pawing lion.   Sometimes he doesn’t turn his head at all, and they shrug, and start the new set of tones.   I am behind him, silent, my only job to keep him in his seat.  Tears roll down my face as I listen to the tones and my son does not look up from his toy, does not indicate he heard it.  The tone gets louder, and I will him to turn his head, to hear the noise.  I silently beg him, I plan to prod him in the back, something, anything, just so he’ll turn his head to the “It’s A Small World” reject animal.  “Nine months”, I think.  “Nine months I told you there was a problem, and you fobbed me off. 1/3 of my kid’s entire life, you handed me olive oil and told me all was well.  Nine fucking months…”

The testing is over, they present the findings.  The tympanometry test shoots a stream of pure sound to the eardrum and gauges the movement.  The line on the graph should look like a little bell curve.  My son’s is flat on the bottom of the graph.  “…As you can see, there is no movement of the eardrum on the right side…the left side shows a negative impression, which is an indicator of a dysfunction of the eustacian tube…”.

Top graph, right ear.  Bottom graph, left.  This is also what a breaking heart looks like.

Top graph, right ear. Bottom graph, left. This is also what a breaking heart looks like.

I think back to when I was first diagnosed bipolar, and had to learn a medical dictionary’s worth of terms overnight. At least I have practice.  The right ear’s lack of movement is probably caused by glue ear, which is treatable.  The left ear is a different story, that will need far more thorough testing.  I thank them for their results, and ask about next steps.  An ENT, they say, and an audiologist are needed.  They can’t diagnose the levels of hearing loss in specific ears, only that he has it, and preliminary physiological reasons why.  We leave, and walk to Regent St to catch the bus home.  He falls asleep somewhere on Kensington High St.

 

But let me back up.

 

Monday we had the speech therapist’s evaluation (story here).  Wednesday I met with my GP, who kindly told the woman who’s child her practice has been under treating for the better part of a year, ” I don’t think you need to be quite so anxious – I don’t think something drastic is going to happen this afternoon” (Stay classy, you horrid woman) (full story here), but who gave me a location-specific referral (even though I asked for an open referral so I could call all the metro hospitals to see about availability), and of course when I called the referred hospital, was told there were no appointments in the near future (3+ months), but that I would be put on a waiting list.  I was told at the GP’s that I had been referred to an audiologist in February, and when I tracked them down, scared out of my wits that I had an appt booked but maybe the letter never came, was told by a receptionist that they actually lost their doctor a while back, and haven’t been taking patients for months now.  (Side note to Parson’s Green paediatric audiology:  Did it not occur to anyone in your office to let local doctors know that you could not honour their referrals, or did you let them all stack up somewhere and make little origami cranes out of them?  Either way, fuck you and your incompetence).  So I began calling private hospitals, till I found Portland, who you can self-refer to (basically if you have cash in hand, you can pretty much get whatever you want).  I then called our GP and begged for a bloody open referral, and explained that Parson’s isn’t seeing new patients, and Charing Cross has a wait list a mile long.

I feel bad about that for a few moments after booking the appointment – for enough cash, you can get seen first.  That’s against my principles of equality, of fairness.  Am I a hypocrite because I fight for rights of all, but use wealth or influence to get the best for my child when I need it?  Maybe. Will I do it again in a heartbeat to get my kid to hear?  You are damn right I will.  The private hospital doesn’t take NHS, so no one was being displaced from my phone call.  And let me be very clear about my hypocrisy levels concerning my child:  I love animals, but would – with a smile one my face – stab a kitten in the neck if it meant my kid could hear me today.  I’m a mother first, and a class anti-warrior second.

**

So, the private appointment was Thursday.  When we got home there was a message on the machine from my GP.  “Regarding your request for an open referral, could you call me back?”.  Their office opens at 7 am.  I have been up since 5.45, waiting.  At the stroke of 7, I call, and the battle starts fresh.  Except this time I have proof positive that he needs help NOW, not when she feels like it.

SONY DSC

Wish us luck.


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