Making deaf children matter

Musings and blogs from a deaf campaigner

Posts Tagged ‘cochlear implants’

Leading politician reminisces on cochlear implants

Posted by Ian Noon on April 29, 2010

I admit it, I’m a wibbly-wobbly flip-flopping Guardian reader. And whilst reading the paper on Saturday, I noticed that George Osborne, shadow Chancellor for the Conservative party, was doing some quick-fire questions and was asked: “in your role as an MP, of what are you most proud?”

The answer? “The individual victories for constituents. Recently, my office finally got a young boy the ear implant his family had been campaigning for.”

Image courtesy of Knutsford Guardian

The boy in question is Matthew (pictured left in photo) whose family successfully went to war against local health bosses who had refused to fund a second cochlear implant and dragged their feet on it for an eternity, even though the boy had a legal entitlement to the procedure. A Family Officer from the National Deaf Children’s Society supported the family in their legal battle and the story got featured in the other Guardian – the Knutsford Guardian back in January.

Really interesting to see it’s one of the most memorable local cases for George. And a nice example of how getting a Member of Parliament involved can make a big difference to local campaigns.

PS If you want to make sure that your future MP will support deaf children, why not ask him/her to sign the NDCS election pledge for deaf children?

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One year anniversary of NICE report on cochlear implants

Posted by Ian Noon on January 11, 2010



Image courtesy of Maíra Soares

It’s nearly a year now since NICE recommended that all severely to profoundly deaf children should be given 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 it.

The good news is that initial figures suggest that most of them are. Considering it’s a fairly expensive operation, this is no mean achievement. A pat on the back for these people seems well deserved

The bad news is that do appear to be a few malcontents popping up around the country. Whilst I don’t believe for a moment that it really is grim up north, I have to note that one of the worse offenders appears to be the Cheshire area in the North West where NDCS has supporting a family who wanted their deaf son to have a second cochlear implant (having already received one implant). The NICE recommendations allow this – and patients have a legal right to anything recommended by NICE. Despite this, this family were forced to go through lots of pointless bureacratic hoops and make several funding requests before the local health board caved in. Totally not on. The story got covered in their local paper, and hopefully the local health board won’t try it and pull a cheeky one again.

NDCS is keeping an eye out for similiar stories around England, and taking swift action where it does. Please get in touch if you have any specific examples to share, and we’ll get on the case.

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Review of 2009 for deaf children… and predictions for 2010

Posted by Ian Noon on January 8, 2010

Well, we’re already a week into the new decade / ice age, but for my first blog post of 2010, I’d like to look back at some of the highlights / lowlights of NDCS campaigns in 2009.

Highlights
The big one has to the campaign victory on acoustics, which dominated most of our campaigning activity from the past year. It was great to see all of our work, including a parliamentary event, briefings to MPs and mentions in parliamentary debates, reports on how lots of local authorities didn’t have a clue about the quality of acoustics in their new schools, all make a difference. The Government announcement in October that it would take action to require testing in new schools was a delicious moment which will make a big difference to the quality of education for deaf children.

Although it was quite a long time ago, the announcement back in January last year that the National Institute for Health and Clinical Excellence (NICE) would recommend cochlear implants as an option in one or both ears for all severely / profoundly deaf children was another biggie for deaf children. It follows lots of concerted and co-ordinated lobbying by NDCS and other deaf charities. A year on, nearly all local health bodies seem to be doing a good job with getting on with implementing the recommendations.

And although the dust hasn’t really settled on it yet, the Lamb inquiry into the special educational needs system offers the promise of lots of significant changes for deaf children and their parents. Laws are being changed as we speak by the Government to implement some of its recommendations.

For me, personally, the highlight is supporting and watch deaf young people campaigning in action for NDCS, whether at party conferences or our parliamentary events. It’s always good to see parliamentarians walk away realising what deaf children can achieve, providing they’re given the right support. It was also great to see Louis Kissaun, a deaf young star, on Shameless, the Channel 4 programme, this year.

Lowlights

The continuing failure by the BBC to provide access to its online news content continues to be depressing, especially on news stories that feature deaf children and young people. Quite a few people clearly seemed to have skipped class the day they were covering disability awareness training at the BBC.

And the continuing problems with Phonak Naida hearing aids are also a bit of a worry, though it’s good to see that the powers that be are working hard on this problem as we speak.

Predictions for 2010?

Apparently, there’s going to be a general election in a few months. Whatever the result, there are going to be a lot of new faces in Parliament and lots of new ideas for how schools and hospitals should be run. NDCS will be busy getting to grips with the new political landscape and making sure deaf children are high on the agenda.

It also looks as if we’re going to be doing a lot more campaign work around audiology services this year. More to follow on this, but a range of issues are cropping up, for example, on the training of audiologists. NDCS will be on alert making sure deaf children get the audiology services they need.

Here’s hoping it’s a good new year for deaf children and NDCS campaigns. Please do keep sending in your comments, thoughts and any stories about how deaf children in your area are doing. We’ll do our best to respond and incorporate into our campaign work. Happy new year!

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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…

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NICE guidance on cochlear implants finally published!

Posted by Ian Noon on January 28, 2009

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!

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The appeal against NICE report on cochlear implants

Posted by Ian Noon on November 27, 2008

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.

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Update on NICE review on cochlear implants

Posted by Ian Noon on November 25, 2008

To go back to a story on cochlear implants from a few months ago, you might remember that the National Institute for Health and Clinical Excellence had published their conclusions on cochlear implants. Their conclusions were more positive than we could have hoped for, meaning that any parents who made an informed choice for it could chose for their child to have cochlear implants in one or both ears.

If all had gone to plan, primary care trusts would currently be getting ready to implement this guidance…

Instead, someone appealed against the NICE findings. We had naively assumed that no-one would do such a thing so it’s very frustrating. Tomorrow, there will be an appeal hearing and we will find out who has appealed and why. I’ll be there. Maybe even with some rotten fruit and veg in my bag and my guide book to effective heckling.*

Best case scenario is that this is just a unhelpful delay – but that soon primary care trusts can get on with implementing the guidance. Worse case scenario is that the appeal is upheld – and then we go back to the drawing board with deaf children experiencing long delays and a postcode lottery in getting cochear implants.

Fingers crossed.

*Not really.

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A NICE result on cochlear implants

Posted by Ian Noon on September 2, 2008

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.

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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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