The CI Journey Begins

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.

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