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.

Never Leave A Campbell With Nothing To Do…

A week arrives where we have nothing to do. No appointments, no means of pressing on with Alice’s treatment, nobody to nag.

time for an email to David Sevadurai:

“It has been a couple of weeks since we last spoke to discuss the results of Alice’s various tests. You mentioned on the phone that you would be entering Alice into the Cochlear Implant programme at St. George’s to give her access to the various support services, including Speech and Language Therapy at Christopher Place. We had already contacted them directly, so would like to understand how to progress this.

We are both extremely pleased with the contact we’ve had with you and the interest you are taking in Alice’s development.

We had a coffee over the weekend with Neil Donnelly who as you know has just completed the Graham Fraser Fellowship in Sydney (as you did before him). We share a mutual friend and he lives only 1/2 a mile from us. It was interesting to get a further insight into Cochlear Implantation and what this entails, particularly with reference AN/AD. Interestingly, he highlighted the far more ‘aggressive’ manner in which children are treated in Australia.

It has long been our belief that Alice will end up being implanted. Even if the hearing aids do provide some benefit in the short term (which up until now does not appear to be the case) from the evidence we have heard so far, it would seem her best possible chances lie in her having an implant fitted. Equally, as we have discussed before, the sooner this is done the better – certainly before she is 2. We are due to see Tony Sirimanna next Thursday and will be interested to hear his thoughts on this.

With Alice’s second birthday rapidly approaching (end of March) we are both keen that if implantation is the best course of action for her that, if at all possible, she is implanted and ‘switched on’ well in advance of this. To this end, maybe you could enlighten us as to what the process and timings are likely to be from here (Neil suggested the funding decision process normally takes around six weeks?) and, if anything, what we can be doing to ensure that Alice receives such treatment at the earliest possible opportunity.

Do let us know your thoughts.”

crosses fingers and awaits response.

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