It’s not often that Parliament debates deafness, so Friday 24 March was important; an adjournment debate* discussed whether the current rules set by NICE, the National Institute for Health and Care Excellence, are preventing some adults who would benefit from a cochlear implant from receiving one.
The debate happened as a result of a petition (on change.org) by Diane Matthews, who was refused a cochlear implant on the basis of a speech comprehension test, known as the Bamford-Kowal-Bench (BKB) test.
Like me.
Two years ago I was tested for a cochlear implant and turned down for the same reason – my speech comprehension with hearing aids, using the BKB test, was better than the cut-off level set by NICE.
It’s an interesting process being tested for an implant. When the audiology department at my local hospital decided to refer me for an assessment I was a mixture of excited and terrified. Excited that it might be possible to halt the continual downward slide of my hearing and give me some speech comprehension back. Terrified at the thought of an operation, a long process of readjustment and the uncertainty of the eventual outcome – some people adapt better to implants than others.
I didn’t have any of the concerns about implants held by some members of the Deaf community. I have adult onset deafness and don’t sign. If an implant would help me, I would want one.
The first test on assessment day was a standard hearing test; the same procedure I’d experienced many times before. I don’t enjoy the process. There is something very depressing about sitting there with a button to push whenever you hear a sound and then not hearing any sounds (or not many anyway). I “passed” the test; my hearing was bad enough to qualify for an implant.
But then there was the test (the BKB test) that knocked my implant chances on the head. With my hearing aids back in, voices were played to me over speakers, repeating a variety of short phrases or sentences. Incredibly, I correctly deciphered/guessed/heard quite a few of them. I say “incredibly” because, without lip reading, I can no longer understand speech in real life. Ask my husband. Ask my friends. I can’t do it. But in this testing room I could, to some extent. What was going on?
Firstly, there were no competing sounds. Other than the recorded voice there was only silence. Unlike real life, huh? No dishwasher going in the background, car engine noise, other people talking, traffic passing… Life as it lived involves a continual blanket of noise, with speech desperately trying to poke a way through it – or that’s how it feels to me.
Secondly, I was listening to short, simple phrases, followed by a pause, during which I had nothing else to do but attempt to decipher what I’d heard. In real life people don’t speak in short phrases. There are no big gaps between one phrase and the next to give your brain time to shuffle some options about and come up with a plausible candidate for the translation. In real life, if you miss the first few words, the conversation has moved on.
Thirdly, I discovered whilst reading the text of the adjournment debate online that the voices are played at a volume of 70db when a more natural volume for speech would be 35db. That’s quite a difference.
Anyway, I did really well. Or really badly, if you want an implant. I was still “getting a lot of benefit from my hearing aids”. I was advised to ask for another assessment if my hearing worsened (as it inevitably will, if past form is anything to go by). The lovely staff (everyone I met at the implant centre was fantastic) told me that the test I had “failed” was under review and I would be contacted for a re-test if the rules changed.
I found out on Friday, when reading the text of the adjournment debate, that NICE are expecting to conclude their review of cochlear implant testing procedures this summer. They are an independent body (Parliament can’t tell them what to do) but the responsible Minister (Under-Secretary of State for Health David Mowat) seemed very sympathetic and promised to contact NICE to tell them about the debate and to raise the points made in favour of a re-think of the rules.
I was shocked to discover that some 94% of teenagers with severe or profound hearing loss have cochlear implants but only about 7% of the adult population with the same degree of deafness. As David Mowat said, “that could lead us to think that commissioners do not always consider the technology as an appropriate solution when a retired or older person has a profound hearing loss. In a sense, I suppose that is age discrimination.”
So I await the NICE results with interest.
Just to be clear, I don’t want a cochlear implant if it isn’t going to improve my understanding of speech. If the BKB test is right and my speech comprehension with hearing aids is about as good as it would be with an implant, what would be the point? But if the test is wrong, which I suspect it is, I could be benefitting from an implant – and I’m not.
Diane Matthews’ petition is still available on change.org if you would like to support it. It now has over 900 signatures.
* An adjournment debate is a half-hour session at the end of every sitting of Parliament, set aside to give an opportunity for a backbench MP to raise an issue and receive a response from the relevant Minister. The backbencher in this case was Jim Fitzpatrick MP who is Chair of the All Party Parliamentary Group on Deafness.
Vera started morethanabitdeaf.com in February last year. In it she talks about her life with hearing loss – first diagnosed in her early 20s and deteriorating steadily since. Early 60s. Retired. Lives in a village in Yorkshire with husband, dog and cat. Resolutely ploughing on, trying to see the funny side.
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Terence Paget
March 31, 2017
I have not been tested for a CI so make no comment about the process. (Like the writer, Vera, my hearing loss is age-related and is progressive, currently flat-lining in both ears at about 70dB.)
I comment about one particular feature of the audiology testing as based on my now extensive experience (my first test were in the very early 1990s). In brief, and with every respect to the technicians who perform the tests (in the sound-proofed cubicles), I have come to “learn” when a signal is about to be transmitted. Equally, one knows it is a “progressive” test in that it is usual for the high frequencies to start and then the lower frequencies follow. As said, in short, one learns to anticipate when there should be a signal. Thus, this aspect of testing should be much more random as to what frequencies are transmitted during the testing.
Further, and again because of experience and during testing, I have come to realise that I have “heard” a sound because I no longer hear a sound. What I mean is, I am more aware that there has been a signal because there is a difference when there is no signal after a signal has been transmitted – it’s not the signal I heard, but the absence of any form of sound afterwards. The point being, I have clicked on the button as a knee-jerk reaction to knowing there was a signal rather than because I actually heard a signal.
All of which is to say, with age and experience, we may find we are our own worst enemies during testing because what is being recorded on the audiograms may not be a faithful record of what we actually heard.
Vera, if possible, could you post again when there is any outcome from the debate and, separately, the NICE assessment?
Robert Mandara
March 31, 2017
That’s an excellent description of the test Terence! I don’t understand why the beep test isn’t automatically performed by a computer. A computer could easily jump between frequencies and change the interval between beeps. Plus it could analyse the timing of the button press more accurately to determine whether it is answering a real beep.
I’m British but I don’t live in Britain. Consequently I have been able to get bilateral cochlear implants. In the UK, under the current rules, it’s quite possible that I would not even have managed to get one implant. British deaf adults are certainly being deprived of the opportunity of better hearing.
mjfahey
March 31, 2017
Terrence, I can’t be sure but in my own tests, I always have a problem with tinnitus and find myself pressing the button when I haven’t actually heard anything. I spoke to the audiologist about this and she said that the test makes allowances for this by jumping back and forward testing the same frequencies more than once. If you make any mistakes they are covered by double/treble checking. I have experienced that premonition of hearing the sound myself but rest assured they normally catch these false sounds by going over the same ground… I believe they are trained to catch you out so to speak. 🙂
I agree that the BKB tests are not ideal cut off points for potential Ci candidates… simply because, having a Ci has made such a difference in my life, and no one should be denied the same chance to have such a life changing device.
What makes me laugh is the radiologist apologising for traffic noise outside the room… I always make a point of saying that that is more like real life than being in a sound proof box… but then they say yes but it’s very much easier to measure if everything is controlled and they know the parameters for each candidate including controlling background noise i.e. playing background noise via tape which is set at measured level.
In my own tests? With aids I can hear sound with the occasional recognition of speech. Without aids nothing. With lip reading and aids I managed quite well in a soundproof box and in the real world. With the Ci it’s 100% better so never give up… keep fighting for it. Good luck.
Ruth
March 31, 2017
I am a hearing aid user (both ears) but yes yes yes I concur to the comments below by Terrance – thank you.
“Further, and again because of experience and during testing, I have come to realise that I have “heard” a sound because I no longer hear a sound. What I mean is, I am more aware that there has been a signal because there is a difference when there is no signal after a signal has been transmitted – it’s not the signal I heard, but the absence of any form of sound afterwards. The point being, I have clicked on the button as a knee-jerk reaction to knowing there was a signal rather than because I actually heard a signal.
All of which is to say, with age and experience, we may find we are our own worst enemies during testing because what is being recorded on the audiograms may not be a faithful record of what we actually heard.”
ABSOULTELY!
deaflinguist
March 31, 2017
I’d concur that many people are their own worst enemies at this, and sometimes without realising. Many deaf people spend so much time filling in the gaps automatically that it is often very difficult for candidates to take a step back and *not* do this. By guessing, you are showing what you can do with your own coping mechanisms, which is not unaided hearing (you’re using your brain to compensate).
Separating out what you can actually hear and what you’re making sense of from context is really difficult, but it might be worth doing some self-analysis on this and taking this back to your audiology department. I think you would be within your rights to ask to retake the test and just focus on the words you actually physically understand.
For example, in a sentence such as “Did you go to the match on Saturday?” you might hear “Did . . .”, which sets you up to anticipate “you” as reasonably likely. The next word you might get is “match” and you’d then think that “Saturday” was probably right from the rhythm and as the most likely day for a match.
I think a fairer test would test you under various conditions: real-world noise would be easy to replicate with recordings taken in moderately and very busy environments. (The sound-proof room does have its uses – because if you can’t hear under optimal conditions, you are clearly struggling.) Random sentences should be part of the mix (takes out the anticipatory aspect – but they should be more randomised, perhaps computer-generated, to avoid “Did you go to the match on Saturday?”-type scenarios, which retain anticipatory cues that a skilled contextual listener can use) and assessment of your ability to hold conversations on simple and more complex topics with an unknown speaker. Those are just suggestions, I’m sure others can think of more.
Diane Matthews
April 6, 2017
Link to the petition https://www.change.org/p/national-make-cochlear-referral-tests-in-realistic-environments It would be very helpful for you put these comments on the petition. Many thanks Diane