Wednesday, March 28, 2007

The decision that never was

I was early to my desk yesterday morning, fingers hovering over the keyboard ready to pound out a fuming diatribe about the Healthcare Commission, PCTs and all the usual Dark Forces that are lined up against us. I made a few false starts... a few sentences about a phone call that told me little that I hadn't already suspected... but I kept deleting them. I just wasn't angry enough. I'd prepared myself too well for the expected disappointment.

As it was the phone call didn't even bring the anticipated rejection; it was actually to tell us that the review proper was just about to start and that what was being examined was the process rather than the decision - which I kinda knew. That the process involved flawed thinking, erroneous interpretation of data, ignorance of the facts and dismissal of expert opinion is, I would hope, where there is thin glimmer of hope. I suspect, however, that the PCT are going to get marks for effort - they did try to think, after all... and they collected some data and expert opinion which, although the interpretation flew in the face of national trends, accumulating evidence (check out PubMed folks) and said opinion was still, erm, done.

So I didn't get round to this post yesterday. Just as I was building up a head of steam a sleepy smiling face appeared in a bedroom doorway and I got distracted. A few cuddles cheered me up, as did Tom's running commentary that flowed uninterrupted through getting dressed, washed and out of the house.

It still sucks that our PCT is broke. It still sucks that we have to be among the few pioneers who discover all the bizarre quirks that accompany life as a part-NHS, part privately funded implant family. What doesn't suck at all is the jabbering fruit loop that is Tom.

At a slight tangent - but this is where my thoughts led so let's go with it - the whole jabbering offspring thing made me think of Schuyler and her Monster. Rob relays his morning's TV viewing when he heard a mother complaining about a child reading and talking too much... you can't make it up. Perspective is an interesting thing - particularly when kids are involved.

Friday, March 23, 2007

Waiting Again.

Early next week, after 7+ months of (presumably) gradual ascent in someone's in-tray, we should hear the outcome of the Healthcare Commission's Independent Review. I have touched on their place in the grand scheme of things a couple of times at least (I wasn't so hot on the labels in the early days). They're frequently described in the press as the 'Health Service Watchdog' which isn't a bad description but, considering the size of the Health Service, I wish they had more than one dog to watch it.

So we had to complain about our treatment, or lack of it, by the local PCT. We compiled what I'm tempted to call a dossier about the PCT's exchanges with us, particularly the appeal panel session itself and the increasingly isolated position of our PCT with regard to bilateral implantation and meningitis.

I don't know how this will end. In retrospect, it seems to me that we took something of a scattergun approach to the complaint, including as many possible angles in the hope that one of them was the required trigger. Like I've said before, these dealings with bureaucracy feel like a particularly cruel children's guessing game. There is a right answer, they're just not going to tell you the question and will, if the mood takes them, change the answer if you get too close with your guesses.

I'm not sure what range of actions are open to the Healthcare Commission. We give short shrift to the dream scenario, where an outraged 'Commissioner' demands the PCT apologise and reimburse us for Tom's second implant forthwith. Instead we kid ourselves that it's a done deal and the outcome will be along the lines of 'while it is unfortunate, the PCT were within their rights to...'. And so we prepare for the next step.

Tuesday, March 20, 2007

'Here you go'

I thought I'd record a couple of language anecdotes before I forget them. They're not poignant or immensely significant - they're just typical of where Tom is at.

Curled up in Tom's 'Racing Car Bed!' (it is always pronounced with an exclamation mark) this evening, Tom and I read perennial favourite 'The Three Little Pigs'. The first pig had just met the little girl and, spotting him for the mug he was, she'd sold him a load of straw. I read the next line -

''I will make a house of straw' said the first little pig'

and Tom dived in with the next ...

'So he did just that!'

Hardly remarkable I know. Tom is so familiar with the story - I do the whole pausing for him to finish the line thing and getting him to describe the pictures so he can pretty much tell it himself. What struck me though was that this was just a throw away line that I've never emphasised - it just links the interesting bits together but Tom has absorbed it without being 'taught' and knows its right place.

This morning Tom was sat on the bottom step and I was putting his shoes on him (pretty much the only piece of clothing he will deign to let a grown up put on him without a fight) and Tom went into a little monologue as is his wont -

'Lady put the shoes on Tom'
'Lady said 'Here you go Tom''
'Daddy said 'Thank you lady''

And so Tom recited his account of the purchase of his latest pair of shoes - an event that took place weeks ago. This made me chuckle for all the reasons it does any parent: he picks the oddest things to remember and natter on about, he uses a phrase that we must use a lot ('Here you go') and applies it to a memory in an appropriate way but where it wasn't used originally,

...and he's learnt some manners somewhere along the line too.

Friday, March 16, 2007

Baby's first...

Tom has abruptly entered a period of determined self-sufficiency - but on his terms.

For example - all stages of the toast-making process are preceded and punctuated by a forceful 'Tom-tom do it!' or 'You do it!' (he means 'I' - he has a very individualistic understanding of personal pronouns and uses them liberally and in defiance of common conventions) but when it comes to actually sitting and eating the stuff, the only way its going to be finished before Christmas is if its offered up to his busily chattering mouth.

Getting dressed is another area where Tom is making a bid for autonomy. Its very cute watching him get in a tangle of vest, pyjamas and processor harness - unless its one of those rare occasions when work-at-home dad has to catch a train to the big smoke. He knows... of course he knows.

So yesterday morning, during the daily dress-a-thon, Tom achieved a first which the baby book seems to have missed out of its list of dates to be celebrated - he reattached his magnetic headpiece.

'Tom-tom put your ear on!'

It makes sense to us.

Thursday, March 08, 2007

Seminar Postscript

I wasn't the only parent speaking at the Ear Foundation on Tuesday and, on re-reading my last entry, I feel its important to give them a mention as they, like us, never gave up even when those who support bilateral implantation were saying it was too late.

Tricia Kemp, southern coordinator of CICS spoke passionately and incredibly eloquently about her son who, born deaf, didn't receive his second implant until he was 18 and is benefitting. Aside from the bilateral dimension, Tricia's son's story is particularly thought-provoking. They sought an implant when they weren't offered in the UK and had to travel to Germany in 1991 amid incredibly negative reactions from professionals. We have made some progress in this field then...

Another Mum, Annie Wilson, had brought along a video of her 11 year old explaining for himself how his second implant, carried out only a year or two ago, is helping him. It was very touching and unfortunate that the conference as a whole didn't get to see it. Maybe she'll post it on Vimeo (the thinking person's smut-free alternative to Youtube)?

Tom's story is short and relatively painless compared to some. We never use the word 'lucky' to describe our situation - but on the big scale of unfortunate-stuff-that-happens-too-often, maybe we did OK.

Wednesday, March 07, 2007

Notes from a Seminar

The Ear Foundation held a major seminar on Tuesday (6th March) - 'Bilateral Implantation: Two implants - always better than one?'. The agenda was littered with speakers who are big names in the field of cochlear implantation and audiological research, not just in the UK but across Europe and America. Somewhere down near the bottom of that list, representing a parent's take on all things bilateral, was me. Seeing as we live a stone's throw from the Ear Foundation and Tom is one of the few bilaterally implanted kids in the country (apparently there were around 50 this time last year so it's safe to say there's still well under 100) such opportunities are bound to crop up.

It was a fascinating day; if you ever get the chance, and have an interest in the scientific dimensions of cochlear implantation, then listen out for Rich Tyler (here's a recent lecture), Gerry O'Donoghue (another lecture) and Paul Govaerts to name but a few.

I didn't, however, spend the whole day with my jaw hanging at the sheer cleverness of this cochlear implant stuff. I've moved on from that; after all, Tom is living proof that it is a phenomenal technology that can change lives. We've been waiting for the literature to catch up. More important were several inter-related issues that surfaced during the course of the day... things that place our recent history into stark perspective.

Whichever way you look at it, there is now more than enough evidence of the published, quantifying scientific kind that bilateral cochlear implants work and add considerable benefit to those who aren't assisted by hearing aid. Some of it, admittedly, has emerged since the request for bilaterals for Tom was turned down back in June 2006 but, largely speaking the professionals have known for plenty long enough. There is also a mountain of anecdotal evidence that describes how binaural hearing (hearing in both ears whether it be a mixture of hearing aid and implant or just implants) enriches people's lives by placing them back into the world of sound in a way that unilateral hearing can't match and that is very difficult to quantify.

Essentially, you will struggle to find anyone working in the field who doesn't feel that bilateral implantation, particularly for young children with their years of language development ahead of them, would enhance the quality of recipient's lives in a deeply profound way. One of the key messages from the conference is that's a given and the earlier the better.

So, as there doesn't seem to be much dispute about the value of bilateral implantation, discussions touched on the thorny realities of public sector funding and the ongoing NICE appraisal. It was at these junctures that things got heated, and rightly so.

The position that has been taken by funding bodies in this country - using the lack of research evidence (of which there isn't really a lack) as a convenient scapegoat for not providing for bilateral implantation - is increasingly untenable. It has always been a disgraceful head-in-sand position anyway; it doesn't take a medical genius to see that cost is the only deciding factor. To pretend otherwise is deceitful and one of a number of ways of infuriating the average parent. Never was it suggested that Tom only wear one hearing aid during the period before implantation and, as Mark Lutman mentioned during yesterday's conference, there is little scientific evidence to back up the provision of two hearing aids as opposed to one. So why were we furnished with two? Because gut feeling tells everyone that aiding both sides is best of course.

The seminar reached its emotional peak when the vice-chair of the British Cochlear Implant Group (BCIG) fielded questions on her presentation; essentially a report of the findings of last year's survey of bilateral provision across this country's 22 cochlear implant programmes. What her results suggested was that there were huge discrepancies in not only bilateral provision across the country but also between implant programme's attitudes. There were few statistics presented; we mainly saw examples of the answers given by the respondents. While it isn't surprising that there are differences of opinion and approach across the country, what alarmed was the tone, particularly when it came to funding.

At Tom's appeal one of the panel asked me a question along the following lines - 'If you had two deaf children and two implants, as their parent how would you choose to share them out?'. This guilt-laying approach, possibly designed to appeal to my liberal social conscience, completely misses the point in terms of how the medical profession should be addressing this issue but is indicative of the way the Health Service works itself. The Implant Programmes are presented with the same choices by funders; for every bilateral someone else misses out on one. Keep asking and we'll take the funding away altogether.

The BCIG vice-chair concluded by outlining the recommendations they were proposing to make to NICE. Their policy statement proposed a list of who should get bilateral implants:
  • patients following meningitis/ossification
  • in case of additional sensory handicap
  • where there is a loss in performance or device function in the first ear
  • for participation in research studies.
Essentially the BCIG were preparing to take an incredibly conservative line when the research and the conference was screaming for something much more far-reaching. With the window of opportunity for language development so small, more and more research is indicating that the greatest benefit is gained from both auditory nerves being stimulated at as young an age as possible. All deaf children who gain no benefit from hearing aids should be offered bilateral implants. The longer there is procrastination the more children will miss out.

The contrast with practice in many other countries is stark. A surgeon from Sweden spoke about how bilateral implantation for profoundly deaf children is standard. It took a fight, by parents and the Implant Centres, but they were prepared to fight. With the group who represent the Implant Programmes only offering watered down recommendations, it would seem that we're not up for that sort of fight in the UK. Why?

Is it something to do with how we think about children in this country?