Good news (?)

I've been otherwise engaged, web-wise, over the last week or so updating 2ears2hear - a website that I had a hand in setting up along with another CI dad. The site was set up at the end of last year to raise the profile of the then ongoing appraisal of cochlear implants by NICE (National Institute for Health and Clinical Excellence) here in the UK.

The course of this appraisal has not run smooth and has kept families on tenterhooks, what with their vacillations and oscillations. First there was the excitement of last December when the first appraisal guidance report pointed to bilateral implants for prelingually deafened children, post-meningitic children and children and adults who are blind. It was a big step - but still left hundreds of children and adults out.

Ahead of the second appraisal document's publication in March 2008, someone seemed to get a little anxious about the bill and the prelingually deafened children disappeared from the list. News of the credit crunch had reached the Health Service and belts were being tightened. Lets not worry about the future and think about the bottom line now...

So when the Final Appraisal Determination (where did they get these names from?) was published last week, I must admit to not feeling too optimistic about its contents but...

Well, you take a read.

There's another week to go before final publication and this rollercoaster may have another twist, sheer plunge or two to come but it would seem that, barring appeals from the formal consultees, the proposals are beyond what could ever have been expected.

All children with severe to profound deafness to get bilateral implants along with all blind adults and those with heavy reliance on hearing due to other disabilities... Note - there's no need to make special mention of the post-meningitic; the criteria are so broad. Now that is fabulous news. It brings with it a number of concerns - of which more in later posts - but firstly, on top of that great news, there is this statement:

Sequential bilateral cochlear implantation is not recommended as an option for people with severe to profound deafness. People who had a unilateral implant before publication of this guidance, and who fall into one of the categories described in 1.2, should have the option of an additional contralateral implant only if this is considered to provide sufficient benefit by the responsible clinician after an informed discussion with the individual person and their carers.

Now that sounds like an opportunity for more ambiguity and a continuation of the postcode lottery for a significant number of individuals - those who had the misfortune to get deaf at the wrong time.

The reason is all related to the QALYs and the cost of the second implant. Two ops cost enough more than one to tip the cost-effectiveness balance and, given the approximate nature of the calculations (I'm still no nearer understanding how you actually assign numbers to quality of life with anything approaching certainty), it pushes the cost of simultaneous implantation beyond the acceptable boundary.

Anyway, my fellow CI dad Dominic has put it all far more eloquently on http://www.2ears2hear.org.uk - he's the one behind the words, I just do the grunt work with the website. If you get a chance, there are a few interesting case studies on there too including one that gives a slightly different perspective.