Making deaf children matter

Musings and blogs from a deaf campaigner

Something NICE comes this way…

Posted by Ian Noon on August 26, 2008

No, sadly, it’s not a box of chocolate digestives but a report into cochlear implants from the National Institute for Clinical Excellence (or NICE – hence the appalling pun in the title). NICE is a Government body which decides what treatments the NHS can provide in England and Wales. And cochlear implants are devices implanted into the ear which give profoundly deaf children a sensation of hearing. Cochlear implants are only really given to children who are severely or profoundly deaf and who receive little or no benefit from conventional hearing aids. For the past two years or so, NICE have been looking into whether cochlear implants should be given to profoundly deaf children as standard where parents / children have made the choice for this option.

And my spies* tell me that NICE are due to publish their conclusions imminently…

To bring you up to speed, NICE have published a few consultation documents. If you have the appetite, you can read these and the rest of the history on the NICE website. One of the issues is what they will say about unilateral implants (in one ear) and bilateral implants (in both ears). In their first consultation document, they seemed to be moving in favour of unilateral AND bilateral implants. But then in the second, NICE went cool on bilateral implants. But then after that they mentioned they were looking into more detail in the cost effectiveness of second implants. So the final document may say something completely different.

Currently, some deaf children are having to wait extremely long periods for a unilateral cochlear implant – so a positive recommendation on this would help address this. And few deaf children are given bilateral cochlear implants, and many parents out there feel strongly that their child should. There is some emerging evidence that bilateral cochlear implants can help profoundly deaf children to work out where noise is coming from and to understand speech in noisy classrooms. Given how noisy mainstream classrooms can be, this suggests that bilateral cochlear implants might help deaf children learn.

Cochlear implants remain fairly controversial. I’ve heard people describe them as an attack on the human rights of children, as an attempt by doctors to impose a medical view of disability on deaf children and getting deaf children to fit in with the hearing world (rather than accepting and welcoming their deafness) and even as a means of killing deaf culture.

I actually used to be fairly hostile to cochlear implants – back in the days when I was still reading the Communist Manifesto probably – and still recognise some of these points. I also get very uncomfortable when cochlear implants are described as a ‘cure’ for deafness. They’re not – children with cochlear implants are still deaf and still have communication needs. These needs still need to be met. I sometimes wonder how much money is spent on meeting these needs for all deaf children than spent on these ‘miracle cures’ for deaf children and, unfortunately, I suspect it’s not very much.

But over time, having met more deaf children and adults with implants, I’ve become a bit more flexible in my views. I see cochlear implants as providing deaf people with options – it helps deaf children to participate and communicate with their hearing peers in what is a hearing world. And cochlear implants don’t stop deaf children from being deaf and from learning or continuing to communicate in sign language. Research from NDCS and the Ear Foundation suggests many deaf children with implants are flexible with their communication approach and prefer this flexibility. Ultimately, I believe that options empower deaf children.

But what do you think? And importantly, what will NICE think? Watch this space to find out.

* By spies, I of course mean the NICE website which says a final report is due in September…

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3 Responses to “Something NICE comes this way…”

  1. MM said

    I know what the ‘Deaf’ community HOPES they will say, i.e. CI’s are no use or not cost effective, but either way I don’t think it will affect the desire to implant, or that it will decrease, it won’t affect anti-CI people who are totally against implantation. They will make a meal of whatever decision, if its a thumbs up for less implantation, a victory for culture, if not, the medical area and NICE are still attacking them. Heads they win, tails NICE will lose. It is difficult and contentious to balance cash-wise the value of a CI against a lifetime of signed support and education, but that is part of what they have to do. I am unsure if they will even take in to account the cultural aspect, as hearing loss is their remit basically and the best way of addressing it. CI decisions are taken by parents, not medical staff, they just advize. There is plenty online from the ‘Deaf’ area of their side of things. Then NICE has to justify the cost, and its effectiveness, in which order ? hmmmmmmmmmm !

  2. Drew's Dad said

    Ian, for those persons/parents/children that find cochlear implants appropriate, our experience with our son tells us that bilateral cochlear implants can bring fantastic results.

    Drew received simultaneous, bilateral implants at 8 months of age, and quickly began responding to sounds and now has an ever growing oral language base. Here he is at 19 months old: http://www.youtube.com/watch?v=tf58cbVNHVE

    Of course, we realize that implants are not for everyone, but we feel that bilateral implants should be available to those who consider the procedure.

  3. In my 30 years of teaching deaf children, I have seen very mixed results. When the implants work and speech therapy works, then the results are amazing. When they do not work, or the brain does not interpret the audio signal or if speech therapy is lacking or parental involvment with it, then any ONE of these factors can and will inhibit great results.
    Bilateral implants can work wonders but, in using them, one rules out any further work on one ear. Work in ways that science has yet to concieve of.
    Best of luck and hope for super communictions skills.
    Barb

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