Making deaf children matter

Musings and blogs from a deaf campaigner

Whatever happened to… the NICE report on cochlear implants?

Posted by Ian Noon on August 19, 2009

As it’s a relatively quiet month, I’ve been spending a lot of time dealing with trains of thought that start with: “Whatever happened to…” Mostly, on work issues but sometimes I have found myself drifting into a reverie about, for example, Ace of Base, purveyers of classic Swedish pop from the 90s.

Anyhow, one work issue that we’ve been checking up on is cochlear implants. Back in January, it was announced that all deaf children for whom it was appropriate would have the right to cochlear implants, following a report from the National Institute for Health and Clinical Excellence (NICE). Three months later, the new rules on this came into effect.

So how’s it gone? Well, if no news is good news, then it seems to have gone reasonably well with most primary care trusts appearing to just get on with it and following the new rules. We’d be interested to know if that’s the experience of others on the ground as well.

Particularly as some localised problems have popped up recently. We’ve become aware of a case in the North West of England where a deaf child has been confirmed as a candidate for a second cochlear implant but the primary care trust have refused to fund it, without giving any clear reasons. NDCS is supporting the parents on this particular case and the campaigns team stands ready to intervene.

Interested to know others views and experiences in this area. And, of course, if there’s anything you want to know whatever happened to, happy to see if I can oblige.

And Ace of Base are still going strong apparently…

Advertisements

11 Responses to “Whatever happened to… the NICE report on cochlear implants?”

  1. Deaf and Proud said

    This reeks of audism!

  2. MM said

    Double implantation is still a bit in debate as effective or necessary. Usually they wait a fair while to see how the first implant works, and then assess if a second would really benefit. Simply because NICE has OK’d the right, doesn’t mean automatic double implantations. I know in America/Australia there was a made scramble to get 2 CI’s as a right, on the basis you need two ears to get the best of things, the illogic being 2 CI’s will do the same thing, they won’t, not even ONE will give anywhere near the same as the ear. Unlike America the health service here WON’T let you take a risk when they are paying, in that respect they won’t tell anyone else the reasons they are turning a second CI down. Patient confidentiality.

  3. Ian Noon said

    MM, I’d be interested to know how you’ve reached your conclusions. NICE conducted a lengthy two year review of the evidence. The decision to recommend bilateral implants was made after evidence showed there are benefits to bilateral implants in being able to better localise sound and understand speech in noisy surroundings. As a result of the NICE report, the NHS is now required to offer bilateral implants as an option for severely/profoundly deaf children where this is appropriate.

  4. MM said

    ‘Where appropriate’ is the key terminology. The recommendation was ONLY on the grounds if the consultant deemed a double implantation WOULD be of benefit, they don’t suit everyone. The NICE report was quite clear on that, it wasn’t a rubber stamp that anyone can use to get 2 CI’s. That would be irresponsible without proper tests…..Nobody wanting a child implanted can demand two, it has to be validated AFTER or if you have had one already. If they cannot manage one they won’t give you two.

  5. Ian Noon said

    Again, I’m unsure as to how you’ve reached your conclusions but NICE is quite clear that bilateral implantation should be available for those severely/profoundly deaf children whose parents want one and where parents have made an informed choice for this.

    Sequential bilataral implants – one after the other – is only available to severely/profoundly children who have already had one. This is out of fairness. It is not an option for deaf children going forward from now under NICE.

    We would be interested to hear of any examples where parents have sought a second implant but have been unable to get one.

  6. MM said

    Not so ! Parents cannot choose on their own, the consultant has to assess and validate its use or advantage. The ‘informed choice’ you talk about is VIA the consultant, and I suspect the primary care trust OK’ing it too, despite the guidelines, it is still a lottery via funding…you seem to be (simplistically), suggesting if a parent or parents surf the net and others say it is great, that is sufficient, they can go and demand two, it isn’t, and they don’t,as you stated. A number have been turned down for two implants, just surf and you’ll find them, mostly on medical advice and doubts two would be an advantage, or medically viable, it varies individual by individual. Double implantation isn’t a norm even in America… I think YOU are trying to suggest once a parent has decided their child should have two, they have the right to demand that, again, they DON’T. Each according to need and viability.

  7. Ian Noon said

    MM, could you send me the links to cases of where a child has been refused or discouraged bilateral implants in England and Wales since April this year? We’d be very concerned and would want to look into this further. The intention behind my blog was to see what others think is happening on the ground, so this would be really helpful.

    As I said earlier, where the child does not already have one cochlear implant, NICE rules out the future possibility of adeaf child having one cochlear implant after the other – so I would be concerned if any professionals were recommending any such approach. So if you’re aware of any such cases, that would be helpful.

    As you note, there can be medical reasons not to have a second implant in a small number of cases. But NICE, having spent two years considering the evidence, is clear that it is safe and effective in most cases.

    Thanks,

    Ian

  8. MM said

    The basic issue is you are saying anyone can have two implants now NICE has spoken. It is not true. Most of what I have read is anecdotal, by people complaining they cannot get two, on some deaf sites and HI sites. How can we delve into that ? patient confidentiality prevents us knowing medical factors, we only have a gripe by those refused, who may assume they are turned down simply on cost grounds. The whole issue of information of CI’s and indeed the genetics thing will NOT be made available to anyone but those involved. All we are going to read about is those complaining they didn’t get what NICE said they would, but without the medical background so we can adjudge that refusal, that is the stumbling block. CI’s do not give hearing anyway, not as those who can hear would understand it. So much emotiveness about CI’s and unrealistic expectation. NICE gives guidlelines and like disability laws, give out, but getting it WORKING…. I don’t doubt cost is still a major factor still.

  9. Ian Noon said

    I am saying that any severely/profoundly deaf child should have the option of bilateral implants, as recommended by NICE. And I would be interested to learn more of examples where this is not happening. Please do pass any on that you become aware of.

    Note that NICE’s recommendations on bilateral cochlear implants differ for deaf adults and children. NICE didn’t recommend it as an option for deaf adults, with a few exceptions.

  10. VickiK said

    You’re both right…

    Nobody has a right to any medical intervention from the NHS, just by showing up and demanding it. Any intervention has to be recommended by the responsible clinician. But, what the NICE guidance gives us is the right for children who are judged to be likely to get benefit from bilateral implants to be funded by the NHS.

    It’s generally accepted widely that we all hear better with both ears than just one. It gives us better spatial information, improved localisation skills and better hearing in background noise. Not all children who go through an assessment for a cochlear implant will be offered two. Hearing aids and cochlear implants actually give the wearer slightly different benefits (for example cochlear implants give better timing information and hearing aids give better acoustic pitch information) so if a child has some limited residual hearing they may actually be judged to be likely to receive more benefit from one cochlear implant and one hearing aid so that they can get the benefits of both. However, for those children with no useful residual hearing then bilateral implants are more likely to be beneficial and offer the advantages of binaural hearing.

    And that’s all NDCS is saying really. If a child is considered clinically suitable for two implants, and the family choose to have two (and some don’t) then they welcome the NICE guidance because it means the funding should be available.

    However, NICE doesn’t recommend having one implant now and thinking about a second implant later. That means this option is closed to families going through the assessment process now because funding won’t be available later. If they are offered two their choice is having two done now, or just having one for ever. They are allowing those children who were given one before the guidance was published to have a second one funded now (if they are assessed as clinically suitable for a second now and not everyone will be) to be fair really. This option won’t last for ever.

    At the moment bilateral implants are only an option for adults with additional specific health needs (such as visual impairment). So many adults have been turned down for a second implant on the grounds of cost. This may change after the guidance is revised in 2011.

    The NHS Constitution (2009) says ‘You have the right to drugs and treatments that have been recommended by NICE for use in the NHS, if your doctor says they are clinically appropriate for you.’ It also says that these are legal rights. Of course we watch the news every week and hear about examples of NICE approved treatements that patients can’t get. But that’s why the NDCS campaigns team are here and why they want to hear from families who are being let down.

    Keep up the good work Ian!

  11. […] the option of a cochlear implant in one or both ears – so now seems a good time to check again that local health boards in England are getting on with […]

What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

 
%d bloggers like this: