Thursday, July 27, 2006

A Bit of a Week

I'm having what a polite Englishman might call 'a bit of a week'.

On the 1st August we go before an appeals panel. We have half an hour to explain why our son deserves to have a second implant when the Primary Care Trust’s policy is to provide funding for only one. Whatever we present in terms of our interpretation of existing evidence, the proverbial elephant will be sat in the middle of the room that the panel will be doing their best not to mention.

It all comes down to money and an ever-thinning argument relating to lack of evidence.

Studies on bilaterally implanted children are unsurprisingly few and far between at the moment and they have focused on neat audiological outcomes following closely after the surgery has taken place. Due to the extended time it takes for a scientific study to make it to the exalted status of ‘peer reviewed’ and journal publication, these short studies are all that have made it to print. The extended studies – remember we’re talking about children here; the type that can’t concentrate or get bored when being subjected to laborious scientific testing; the type that keep growing and learning, darn their cheeky little hides – are ongoing and are reporting fantastic results at conferences across the world.

The PCT will be thinking ‘this treatment costs too much’ but they can’t refuse treatment on cost alone – it has to relate to its cost-effectiveness. A single implant, when compared to none at all, falls within accepted boundaries when its QALY (Quality Adjusted Life Year) measurement is calculated, according to the one published cost-effectiveness study I can find (which is based on Adults, incidentally, who rarely score as highly on such measures having thoughtlessly squandered assorted chunks of their lives before the auditors could come along and value them). How much a given treatment improves or extends your life is the subject of an equation – an equation that can be calculated in lots of ways depending on what you choose to include or exclude. Which of the many possible or probable state-costing services will Tom need to take advantage of if he doesn’t get a second implant? How much of a gamble are the PCT willing to take? How many of them are they willing to take into account?

Does it take into account, for example, the increased likelihood of Tom needing expensive adaptations such as FM systems in all the classrooms he will visit over his full school career? How about the extent of learning support or transport costs to a school with a deaf unit or a special school? The education department are likely to have to shell out for a taxi twice a day should this eventuality come to pass, never mind the considerable increase in cost incurred by Tom attending a special school or requiring intensive learning support. Judging by the conference presentations and testimony of numerous parents, the potential difference is huge. With two implants, there’s a very real probability that Tom will need no educational support for his hearing at all. Social Services and Education have a term for the desired outcome of intervention – ‘normalisation’. Never has normal sounded so good.

How will Tom’s increased risk of poor mental health be factored in to the equation? Tom remains profoundly deaf in his left ear all the time while his right has been restored to a state described as moderate hearing loss when his implant is switched on. There is plenty of evidence of the increased communication difficulties and subsequent isolation that leads all too frequently to misbehaviour and mental health problems for children who fit this profile. For all the positivism surrounding our son’s progress thus far and our determination to ensure that nothing but the best will do, these are the sort of facts that keep me awake at night.

For every great, heart-warming anecdote about how successful a deaf person can be in this hearing world there’s a mound of statistics that suggest the truth is somewhat less rosy.

Check out the RNID’s recent employment survey for example, or this article on educational outcomes.

An ever increasing number of countries across Western Europe including Norway, Iceland, Sweden, Germany, Spain and Austria are already convinced enough. Several give bilateral implants to all suitable children while others, including Scotland, ensure that the most pressing of cases, those post-meningitic children prone to ossification, get both ears done as soon as possible.

So why do these countries accept that children will perform better with two ears than one? Have they accepted a lower threshold of proof or do they place a different level of emphasis on how much hearing is worth to a child?

I don’t believe for a second that our PCT really thinks that Tom, or indeed any child, is undeserving of a second implant, or that the jury is still out on its benefits. I’m also sure that they’re not in the business of deliberately adding to the stress and pain of fraught families who have been through the mill. I do think, though, that they’ve got their fingers in their ears and are singing ‘la-la-la I can’t hear you’ at the top of their voices with regard to the evidence. It’s just a matter of a few months or years before much more material is published and, if they stick to their criteria, they have to reconsider their policy.

Unfortunately, that’s way too late for us. Tom had a shadow on his MRI that our consultant took to be the early stages of ossification – his window of opportunity for gaining maximum benefit from a second implant is closing rapidly. In fact there’s a slightly larger window swinging slowly shut on all deaf children; the longer the auditory nerve pathways aren’t stimulated on the unimplanted side, the harder it gets until, eventually, some other opportunistic part of the brain spots the neural capacity going begging and says ‘I’ll have those’. And there goes the opportunity.

So we may get answers to some of these questions on the 1st. Actually, we’ll only get the one answer and the key part of it will be rather short and to the point.

Think about us.

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