Whoah – what a long title. Today’s blog comes to you courtesy of the Limping Chicken – the world’s most popular deaf blog, laying eggs every weekday. Last Friday they published my post on the above (thank you Limping Chicken). Here’s what I said…..
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.
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.
And finally (people often ask me this) why call a deaf news website the Limping Chicken? Editor Charlie Swinbourne explains that he called it after a joke that had just gone viral in the deaf world in 2012, when the website was set up. During a BBC3 documentary, a deaf student’s note taker told her she had to go home early because her chicken was ill. Cue lots of jokes, photos, tribute videos…..and the name of the site!
6 thoughts on “My thoughts on Parliament’s adjournment debate about NICE’s cochlear implant rules”
I’ve failed the early stage of testing, despite being severe/profoundly deaf because my loss is greater in the lower frequencies and apparently the test was set up for the more usual loss being greater in the higher frequencies!
Like you, I don’t want an implant if it’s not going to help speech recognition and I’d be devastated if it took out my ability to enjoy music still- (once I know what the tune is) but I’d like to be tested on a level playing field and told if a cochlear implant would help.
Yes, I second that. A level playing field. Doesn’t seem much to ask.
I am going through this process at present having been turned down eight years ago and then classed as borderline last year and been told to persevere with my hearing aids! Then in January did worse so the assessment is continuing……
All digits crossed here, Josie. Good luck.