I prepared myself. I had a little book of questions. I strode into the office confidently, ready to give my audiologist a grilling. It didn’t quite turn out that way.
I wrote about my issues in my last blog about how my old timer’s implant was on its last legs and that an upgrade was overdue. I have my answers now. I had a little theory that my implant was ‘maxed out’ as someone put it. That there would be no possible upgrades as long as I still had the implant in my head. Turns out I was right.
Cochlear, who are a major cochlear implant maker, have not made their latest external sound processors compatible with my specific type of implant. They say they have plans to make it compatible, but we’ve all heard that before from technology giants.
So I won’t be getting an upgrade to my external sound processor as long as it takes for Cochlear to get around to making their current model compatible, which could be a long way off.
The other burning question in my mind was regarding the possibility of removing the implant ahead of time and replace it with a newer model. The answer was no. Put simply, the NHS will only justify operations at the point of need, when it fails. Which is understandable.
Therefore, I’ll be persisting with my current setup for the foreseeable future. It concerns me though that my hearing is effectively in the hands of a technology company who cannot be held to account over providing compatible equipment for everyone. It looks as if though Cochlear are prioritising newer models over old ones. If that’s the case, then how long will it be before they stop making their processors compatible with my implant?
Cochlear are a business first and foremost. It’s not in their interests to cater to absolutely everyone if it isn’t profitable. In that respect, they’re no different from, for example, Apple who phase out older models of the iPhone, iPod or iPad as newer ones are released.
My tune-up results
Another interesting thing I found out was that implants are now lasting beyond 20 years. While I’m relieved that my implant may not be failing anytime soon, what happens if Cochlear stopped making compatible equipment now? Or in the next year? I could find myself going for the next five or so years without an upgrade, waiting for the inevitable.
That’s not the biggest revelation though. I was discussing finding jobs and mentioned that I worked part-time for two overseas companies and might end up moving abroad to pursue those jobs full-time. The audiologist informed me that if I were to ever move abroad and reside in another country permanently, I would no longer be covered by the NHS.
In such a scenario, I would have to contact the local Cochlear centre, inform them of my presence and needs, and pay for private care if there is no national health insurance equivalent in that country. I would also have to pay for a £13,000 operation when my implant fails.
Which is pretty major for my job prospects. And indeed for anyone with ambitions to work abroad. That’s a big issue and I’m concerned that they didn’t tell me about that before. How many parents or CI users know this particular piece of information?
I suppose I’ve been fairly blasé in terms of actually asking questions about my circumstances. Well, no more. I’m going to make sure I know exactly what I can and can’t do. If you’re a CI user, I suggest you do the same. We, more than most, need to be up to date and well-informed about the latest news in the cochlear implant technology.
This article was first published on Callum’s blog here: http://walkthedivide.wordpress.com/
Callum Fox is walking the divide between the hearing and deaf worlds. Profoundly deaf since birth and CI user. In his spare time he balances being 22 years old, being a football fanatic and trying to make it as a writer, journalist and human being. Follow him on Twitter as @WalkTheDivide
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Robert Mandara
February 7, 2013
People don’t often seem to think about how their hearing instruments tether them to a place/country so I’m glad that you’ve raised the subject. We are in Europe now and, I believe, should at least be free to move around within that area. If you are Deaf then I think it’s easier to move around because it is relatively easy to learn other countries’ sign language. If you are deaf then there are extra obstacles.
From my experience, the NHS kindly continued to serve me when I was temporarily (<1 year) and permanently abroad. However, it was a pain sending hearing aids back and forth by post and trying to fix up appointments for the brief periods when I was in the UK. Hearing aids don't go wrong to any kind of schedule.
If you try living outside the UK, I think it will make you realise how good the NHS system is. For example, in Finland, although hearing aids are free, I have to pay for batteries myself (no one's explained the logic). Likewise, if you wear two hearing aids in the UK, you might find yourself like Van Gogh in your new country – I was initially told that I could have only one hearing aid and had to fight hard to get two. In short, do your homework before moving outside of the UK. Where there's a will, there's a way.
Callum Fox (@WalkTheDivide)
February 7, 2013
I absolutely agree. It was quite jarring as I’d never even thought about the logistics before. But it does make you appreciate the NHS, I shudder to think of the costs my current setup would reach in the US, for example.
barakta
February 7, 2013
I’m sorry to hear you’re maxed out for now and dependent on Cochlear making their technology compatible with your original implant. Do you have any kind of ETA for when their new processors will be compatible? That’s the sort of thing I’d be inclined to write to them directly to ask – so you know if it’s 6 months, a year, sometime never etc!
One of the major reasons I learned some BSL in my early 20s was because I hated the idea of being beholden to hearing aid manufacturers and their ideas of compatibility and suitability. I wanted to be able to say “If your aids don’t work, then I’ll do without, BYE!” and that’s a great feeling to have. I am not a typical BAHA user and I am very picky – audiologists’ nightmare. Several BAHA models have been unsuitable for me but suitable for the majority of users.
I am BAHA user so also dependent on the mighty Cochlear (now after it gobbled up smaller companies). While there are compatible systems I’m just as wary of them longer term as I’d be switching Cochlear for Oticon or a newish company instead. My last BAHA went out of production then out of warranty/repair and it was only luck that it kept working long enough for Cochlear to make a newer model that I was willing to use as the two or three interim models were dire.
I wonder if when you were implanted they just assumed you knew you wouldn’t get NHS care if you moved out of the UK or just didn’t have moving overseas as an aspiration for deaf people. I think it’s a bit more subtle than “if you go overseas… you get nothing” and it’ll be linked to eligibility for NHS care and what taxes you’re paying. The reality is as long as they have a UK address they wouldn’t be checking but still theoretically frightening for any of us with ongoing or potentially large medical expenses.
Callum Fox (@WalkTheDivide)
February 7, 2013
I don’t have an ETA unfortunately, although writing to Cochlear is not a bad idea. I may just do that. I’m impressed by your willingness to go without hearing aids, I’m very attached to my cochlear implant and I’m not sure I’d be willing to do that!
In my opinion, audiologists don’t really deal with real world problems that may crop up for CI users. They’re simply there to provide technical support and nothing more. It’s a rare audiologist that actually takes an interest in a CI user’s life other than the status of their equipment.
barakta
February 7, 2013
I haven’t had to test my going without hearing aids, but I wanted the option should it come to that given the prevalence of primitive sound meddling technologies. For having the option to technically decline to wear aids gave me power not to be dependent on audiologists who have a different agenda from me – often a very oralist and audist one which even for me bought up oral was a bit much! Thankfully my latest audiologist was much more open minded and respectful of my varied communication choices.
My current BAHA only does annoying noise management in engine noise situations so it is tolerable. In reality I’d probably take the BAHA and just not wear it a lot of the time, which isn’t much different from now. When I’m alone, or not listening to things I usually have my BAHA off – I don’t even realise I’m doing it now but it does help not overload on the noise.
I don’t actually know what the scope of an audiologist’s role is in terms of advice about the bigger picture. I can’t see how they can give good advice without knowing who you are and what you want to do – surely that’s basic! I work with disabled people and tech and the tech working or not can often be linked to real life and their coping, strategies, abilities and needs in relation to using it. Often “faults” are actually that the person needs more support or the tech was never suitable for that person and their needs. Often tech is recommended which just isn’t good enough, although sometimes that’s only discovered after trying it, but if people have been put off by bad tech they won’t trust anyone to set up tech well for them – I know cos I don’t trust a lot of tech myself.
John David Walker
February 7, 2013
Just a thought: should you be directing your questions to the manufacturer rather than the audiologist. Also, what about encouraging a smaller company to provide an alternative solution – you can’t be the only one and this is a market someone might want to take advantage of.
Callum Fox (@WalkTheDivide)
February 7, 2013
Cochlear, I believe and I may be wrong, are contracted to provide equipment for cochlear implant users and that means that the NHS are not allowed by the terms of that contract to buy from competitors. The only option then to buy from other competitors would be to go private.
barakta
February 7, 2013
I’m not sure you are correct re Cochlear having an exclusive contract with the NHS although it may be a PCT level agreement. My mum’s a ToD and they have multiple different brands of CI given to their pupils who are implanted in a variety of places.
Darryl
February 7, 2013
I’ve been told ‘there will be an update for your implant in the next 12 months’ 3 times in the last 5 years, most recently being about 18 months ago. I’ve stopped asking! I was implanted around the same time as you and often wondered the same things as you… I only have the minimum number of working electrodes left. I refuse to worry about the future though!
Kara
February 8, 2013
You just had brought up on what’s on all old implantees’ minds … Mine is still working well for 24 years now … And I m lucky enough to be accepted by NHS here considering I am an aussie living here for few years
I certainly hopes Cochlear keep those with working implants may like to have latest models especially if they are smaller then the freedom model I have now
But it’s a worth looking into private health insurance as some may cover cochlear needs while being aboard
Connie D. Wade
March 30, 2013
I would agree to this post! Thank you for sharing this info.