• Second Meeting With David Selvadurai

    November 4, 2008 By in Uncategorized Leave a comment

    To the Lister Hospital in London (without Alice this time) to talk to David Selvadurai about what a CI would entail. Both of us have spent many hours trawling the internet to find out what we can about CIs in addition to email, telephone and face-to-face correspendence with a number of experts (Chuck Berlin, Neil Donnelly to name but two). I know what they are, how they work, who makes them (even down to the turnover of their businesses and their long term financial viability), what the benefits and weaknesses are of each model. We have watched videos of the surgeries, the switch ons and have a reasonable understanding of the equation of effort put in versus outcome.

    All this said, will it work for Alice?

    David, as ever, is supportive and very informed, particularly with regard the nuances of AN/AD. He takes us through the assessment procedure and what this will mean (speech and language assessment, assesment by a teacher of the deaf, scans – which she has had – and various other behavioral tests). He highlights the issue of funding but is reasonably comfortable that our PCT should be OK. That said, because Alice has displayed some behavioural responses at the 55db level, this will need further explanation when applying for funding (the PCTs have rarely dealt with anything so complex as AN/AD).

    David feels Alice should be a good candidate based on her scans (good quality, intact nerve etc.), but suggests EEABR (Electrically Evoked Brainstem Responses) could be a useful predictor of CI outcome – the issue – these can only be done at present in Sydney or possibly in Manchester. There is another EABR test – Promontory Stimulation (prom stim) which can be done in this country (at Nottingham), but the nature of the electrode used means the tests can be unreliable. The EEABR in Sydney is done with an electrode shaped like a golf club which allows direct contact with the Cochlea. The Sydney CI centre make these on site. Manchester and GoSH hospitals are awaiting approval (more bureaucracy) to use these in the UK. He tells us he will speak to Prof. Gibson at the Sydney CI Centre (his former mentor on the Graham Fraser fellowship) to seek his advice.

    However, we can kick start the whole process once Dr. Wendy formally refers us to him – we are seeing her on Thursday, along with Tony Sirimanna at GoSH (recognised as one of the only ‘experts’ on AN/AD in the UK).

    off we go!

  • The CI Journey Begins

    October 28, 2008 By in Uncategorized Leave a comment

    As ever, David Selvadurai gets back to us on the same day.

    He has spoken to Dr. Wendy and, so long as we are comfortable, she is happy to go down the CI assessment route.

    One thing you should know about the NHS is that funding for anything that costs more than a syringe is a long, drawn out and bureaucratic process. Where CIs are concerned (the cost for 1 being around £36,000 and a further £18,000 for a second when all is added up) this process can be pretty lengthy.

    NICE (The National Institute for Clinical Excellence) which is the UK Government’s body responsible for recommending treatments (or not) had recently released guidlelines permitting Bilateral implants for any child that had performed well with one. This decision has just been appealed against by a particular PCT (Primary Care Trust) – not too difficult to find out which one if you look hard enough which, in theory, could mean this being removed as an option for many children who would benefit.

    Equally, in the UK there is something of a ‘postcode lottery’ with regard funding for expensive treatments. This has been written about a lot in recent years. Certain PCTs in certain areas of the country will happily approve funding without questioning clinical opinion in much detail, whereas others will drag you through months of scrutiny and appeals before saying No!

    I am aware of a particular PCT in London that has approved CI funding within the hour and others that point blank refuse to fund them.

    Welcome to the UK.

    Anyway we have the news we want that Alice can be entered into this process once we have seen Dr. Wendy and Dr. Sirimanna at GoSH next week. Rather than continue to bombard David Selvadurai with more questions, we decide to book in to see him privately again (paid out of our own pockets) so we can answer some of the 1000’s of questions we have spinning around in our heads right now.