We were in eager anticipation of E's appointment at Great Ormond Street. I had read a lot about the Consultant we were seeing, and his reputation went before him. We tried hard to not raise our expectations too high, but with many factors influencing us it was inevitable that we were hoping for the best, and then some.
Great Ormond Street is tucked away in Central London. It would be fairly easy to get there via underground, but as we had a buggy and a two year old with us, we opted for walking there as neither myself or Paul were daunted by the distance to walk. What the route maps don't show, however, are the incredible volumes of people and traffic that you encounter. Walking from Victoria should have been straight forward, but trying to get past Buckingham Palace at the same time as the Changing of the Guard is near impossible. London changes when you are there for a reason other than sightseeing. Tourists are a nuisance, blocking the path, travelling blinkered-like in huge walking buses, following their leader holding aloft some token umbrella, clipboard or other whack-you-in-the-eye object. Footpaths blocked by maintenance, PCSOs or Soldiers in their normally attention-capturing red uniforms, all mean the London icons lose their novelty and become an obstruction.
By the time we arrived at our destination, we were a bit of a hot, sweaty, stressed couple. Thank goodness for our trusty Phil&Teds double buggy which was strong enough to hold E in the second seat and ensured she had a smooth, effortless journey with her two year old sister.
I'm not sure what I had expected from the main entrance of GOSH, the pictures online misleading my imagination and perhaps expecting something more than it actually is. The waiting area for audiology and several other departments was far from 'Great', although the addition of Playworkers ensured the limited facilities were child focussed and kept orderly. As with any waiting area, the adults were pacing but trying to look like they weren't counting every passing minute beyond their given appointment time, in an increasingly people-filled, hot area.
E was called through for her appointment, but obviously this coincided with her suddenly and desperately needing the toilet, and B needing a dirty nappy changing. Cue much shooing and 'hurry up'-ing of children and their bodily functions!
The first Audiologist we saw was lovely, and my nerves settled with her friendly tone, and her welcome. She performed a hearing test and quickly revealed that E has glue ear and reduced hearing. This didn't come as much of a shock as we are aware of E's intermittent hearing loss, despite locally recorded hearing tests telling us that her hearing is normal. E coped well with the hearing tests, although not quite understanding the button-push system where she is used to putting the little men in their boat.
Next came a Speech Audiogram; a hearing test which requires the listener to repeat a simple word which is spoken over background noise. E's body language was heartbreaking, her eyes pleading with me to help, and her back stiffening in the chair. I could see the anxiety within her, which sent the maternal instinct to rescue her rushing through me and yet I heard my head telling me to keep her there. Holding her hand, stroking her leg and reassuring her in the only way I know - a loving kiss and words that she understands - enabled her to complete the assessment.
We returned to the waiting room, which had somehow filled up even more, to await being called through by the consultant.
We waited.
And we waited.
And we waited some more.
E was kept busy by gluing, pens and one of the playworkers. B was beginning to become restless, already having missed her daytime nap, getting hotter and more grumpy having exhausted the three toy stations provided. It was hard not to draw comparison between our current environment, the Child Development Centre at our local hospital and at The Evelina at St Thomas'. I knew which I preferred, and it wasn't the one I was feeling trapped in! Beginning to think we had been forgotten, we waited for the queue at the reception desk to clear to enquire about our wait. Just as Paul approached the desk, E's name was called.
We moved into the consultant's office. My immediate reaction was to the large, noisy air conditioning unit in the corner of the room. It struck me as ironic that in an audiology department, my hearing was compromised not because of a health problem, but by the environment I was in. The conversation with the consultant was hindered by the noise, and a very unhappy B. We tried hard to give an accurate, chronological history, half expecting him to know at least some of E's history as provided by two consultants locally. Our hearts sank as it became apparent that E's glue ear was going to make any further assessments difficult and that what laid ahead of us was going to be more fighting for cohesive, well planned care. The consultant explained that there was to be no MRI scan and he wanted to carry out full APD (Auditory Processing Disorder) testing with E which would happen in his clinic at GOSH, but that this couldn't happen while E has glue ear, that we needed to liaise with local services to monitor her hearing. I wanted to scream that I have been trying to get our local teams to communicate with me for the last five years and it hadn't really proved successful. That's why I am sat in your clinic now, because no-one will listen. No-one will help. And now it felt like the one person who had been put on a pedestal, the go-to man who will sort everything out was making a total U-turn on the care he had previously planned and I really didn't get why. He left the room to photocopy some of the documents I had with me, and my eyes locked with Paul's seeking reassurance that I was misinterpreting this. Our shared aghast look needed no words. As the consultant returned, Paul asked him to confirm his plan. No MRI, but on the (lengthy) waiting list for APD assessment which can only happen if, by pure luck, E doesn't have glue ear at the time. Correct. We asked about grommets, would these help? Does she need them? It would make no difference as the current NICE Guidelines would prevent her from having this treatment. Can we see a Paediatrican to coordinate this care, to look at all aspects of her development and potential cardiac problems? Yes, but your GP will need to make a referral. There are no general Paeds at GOSH so this can't happen there. You need to liaise with local services, I will write to your Audiology department and see you again if or when E doesn't have glue ear.
We left the appointment exhausted and confused. The MRI, although daunting to have done with a general anaesthetic, had felt like an opportunity to seek physical cause and therefore answers. We know there is a problem in E's brain stem, but not really what or why. If our local hospital had referred her properly, it would be over and done with by now. Would we have put her through that unnecessarily? Had we made the wrong decision to come to GOSH? What lay ahead of us to try and clear glue ear with no intervention? After seeing Eloise's anxiety to a simple speech audiogram, did we really want to put her through the battery of tests needed to diagnose APD?
With heavy hearts, we left GOSH to fight the traffic, congestion and tutting commuters to find our way to the solace of home.
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