Whatever happened to… the NICE report on cochlear implants?

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…


NHS letter on Phonak Naida hearing aids

In response to a blog I did on Phonak Naida Hearing Aids, someone mentioned that their audiologist seemed to a bit clueless about the technological problems that are occuring in some of these hearing aids.

If you’re one of these people, then take this letter from the NHS to your audiologist. It’s an acknowledgement by the NHS that some problems are occuring and that such hearing aids need to be replaced. It should have gone out to all audiologists but it’s clearly not always getting through to everyone…

Now that I’m getting used to my new hearing aids, they do definitely seem to be better. I sometimes feel that I’m now hearing the kind of noises that only dogs could hear whenever there was a full moon…

Deaf and disabled children denied access to basic NHS care

Every Disabled Child Matters (EDCM) have launched an important new campaign today about disabled children’s access to health services.

We know that many professionals work their socks off to help disabled children. But EDCM’s report still makes for depressing reading, particular about the cavalier attitudes of some other professionals to the needs of children with complex health needs. In one example given, a disabled child was left to die and spoken of as if she wasn’t ever really alive at all.

Like other disabled children, deaf children spend a lot of their time at hospitals, particularly in audiology departments. It’s important that all health professionals are child-friendly and have the right levels of deaf awareness to be able to engage effectively with these children.

And a large number of children – around 40% – also have additional needs, of which many will have complex needs. It’s important that their rights to effective hearing aids and audiological equipment isn’t overlooked.

NDCS is supporting the campaign and joining the call for primary care trusts to improve the services they offer to disabled children.

The appeal against NICE report on cochlear implants

Well, the appeal hearing on the NICE appraisal of cochlear implants was riveting…

It turned out that the people appealing were two commissioning groups, representing nine primary care trusts from Yorkshire and the Humber, and the South Central region of England. Just as Sandra Massey said in her comment to the previous post, their reasons for appealing were basically around cost. It’s worth reminding ourselves that cochlear implants are the most expensive operation provided by the NHS. If the NHS is now to start providing two cochlear implants to deaf children, it’s not surprising that primary care trusts won’t want to put up a fight. A shame it’s a fight that may have such a serious impact on deaf children’s life chances. Their detailed legal reasons for appeaing have been published on the NICE website.

The hearing was interesting. There have been so many twists and turns in the whole process that I wouldn’t want to bet on what will happen next. But the fact that the appeal panel asked lots of detailed questions of the primary care trusts seemed to be bad news for them and good news for us. For example, the panel made the same point as MM did – that there had been plenty of time for the appellants to make their case on previous occasions.

But who knows what will happen? The panel normally make up their minds in around 21 days. So watch this space.

A NICE result on cochlear implants

I have a confession to make. Having blogged about it last week, I’ve known what NICE will say in their report on cochlear implants for a full six days. But they made me promise not to say anything about it until the report was officially published or they would never speak to us ever again. I’m sure there was also a veiled threat that they would come over and scratch my Kylie Minogue CDs if I didn’t keep shtum.

But NICE has today has gone public with it’s findings so we can talk about it to anyone we like. And to our surprise, they are much more positive about cochlear implants for deaf children than we expected.

They say that the NHS should give cochlear implants as an option for all profoundly deaf children in one ear or, most unexpectedly, in both ears if this is what the families of a deaf child have chosen. And for children out there who already have one implant, they will get the option to have a second if their doctors agree. It’s a good thing we got an advance copy as for the first few days we were too stunned to say anything.

I still think that families and deaf children need to very carefully consider the issues and have all the information they need to make an informed choice. I also believe that families should take the opportunity to meet other deaf children and young people – those who’ve had an implant and those who chosen not to – to really get on top of the issues. The NICE ruling means that where an informed choice has been in favour of cochlear implants, a deaf child should be able to get one as soon as possible after assessment without having to wait for ages. It is hopefully the end of the postcode lottery that many families experience.

So what next?

1) The report is not yet final as it is subject to appeal – so we’ll be waiting for confirmation this is the final guidance at the end of this month.

2) We expect that some primary care trusts might drag their feet a bit, citing budget concerns. We’ll be watching out for this. NICE’s findings come into effect in the NHS three months from now.

3) We’ll be looking to manufactures of cochlear implants to keep the costs of cochlear implants down.

4) NICE only applies to England and Wales – so we’ll be looking to Scotland and Northern Ireland to follow suit quickly.

Overall though, it’s a good result for NDCS and all the other charities that have worked together on this.

PS You can read more about the whole issue on NDCS campaigns webpage on cochlear implants.

Something NICE comes this way…

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…