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…

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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.

NICE guidance on cochlear implants finally published!

If you’ve been holding your breath waiting for the final NICE guidance on cochlear implants to be published… well, you can now exhale.

Despite a last minute attempt to derail the whole thing and months / years of deliberation, NICE’s final guidance was published this morning. This confirms what was said in the most recent draft – in very basic terms, that cochlear implants in one or both ears should be offered as an option to all profoundly deaf children who get no benefit from hearing aids.

Primary care trusts now have three months to get with it and we’ll be keeping an eye out for any stalling. It is the most expensive operation they provide so I imagine some people may be choking in their Bran Flakes this morning.

As someone who used to be resolutely opposed to cochlear implants when I was growing up, I feel quite strange for feeling pleased and relieved that this is finally out there. Cochlear implants are not for everyone – but for those who have carefully weighed up the pros and cons and been given impartial information, at least they can now pursue this option. NDCS research suggests that deaf young people who were implanted as a child are positive about the decision made on their behalf by their parents.

Of course, I wouldn’t be living up to my nickname of angry deaf man if I didn’t muse on how much money was spent by the South Central and the Yorkshire and the Humber specialised commissioning groups to hire a lawyer to delay and try and derail the whole thing – money that could be spent on providing a better service to deaf children and young people in their areas. If I was living in these areas, I’d be tempted to fire off a letter to these guys…

But otherwise… a good news day!