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.

Update on NICE review on cochlear implants

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.

Failings of newborn hearing screening programme: NDCS on the telly

Our campaign on the newborn hearing screening programme is getting good media coverage around London. In fact, the story was the headline story on ITV London news last night, reported by a journalist who has a deaf son himself and featuring an interview with NDCS’s Director of Policy and Campaigns. I was actually watching the interview from my window at work yesterday and managed to resist the temptation to shout out “Hello Mum!”

Anyhow, you can see the story here:

It’s great to be getting this kind of coverage, and the hope is that it’s putting pressure on the primary care trusts in London and the London Strategic Health Authority to do everything they can.

The only problem? The ITV online story doesn’t have subtitles, making it inaccessible for deaf people. But, for a change, the people at ITV did provide us with a transcript of the story. It’s not good enough but it’s better than nothing. Here’s how the story goes:

REPORTER SPEECH: Polly Burton is a mother to two deaf children but getting their disability diagnosed has been a tough and terrible battle which experts confirm will harm her daughter’s development. Baby Rosa is just six months old but never had her newborn hearing test. It’s only because her eldest sister is deaf that her disability was later identified. This is crucial for being given hearing test, sign language or trying to talk with specialist help.

SOUNDBITE: Polly Burton: “I think it is really worrying, obviously Isabella didn’t have the newborn hearing. If she did we would have been able to start the new sign language even earlier and even maybe, she wouldn’t have had that initial sort of language delay with her signed communication.”

REPORTER SPEECH: The National Deaf Children’s Society campaigned for hearing tests and diagnosis before children are 4 weeks old. But an NHS report has shown not a single year in London when a140 children should have been diagnosed. Only half that number were actually identified.

SOUNDBITE: Brian Gale-National Deaf Children’s Society: “Well if they are not diagnosed early it can have long term implications on their life chances. They will be starting school with underdeveloped language that puts them at a distinctive disadvantage at their hearing with peers and that what the research would show is that language deficit follows them right through schooling they leave with fewer GCSE’S than other children and that has an impact on their life chances.”

REPORTER SPEECH: Polly’s eldest daughter Isabella was only identified as deaf at a year old. She now attends a special school but her speech is already two years behind her haring peers. Experts agree that a hearing child at three will have a vocabulary of about 700 words and an undiagnosed child may know just 25.

Wide shots of reporter sitting and talking on the floor with Isabella. Shots of the reporter in sign language saying to Isabella “Wow you are really clever aren’t you.”

REPORTER speaking, but you can’t see him in shot: The NHS report says delays in diagnosis in London are simply unacceptable as are the problems parents face in getting help. They say the screening at the moment simply isn’t fit for purpose.

REPORTER: Like Polly I’ve got some idea of the problem facing family’s when deaf children are diagnosed very late. My own middle son is profoundly deaf and he wasn’t diagnosed until after he was a year old and now that he is a teenager, he is at least three years behind all his hearing peers. Marcus Powell, London Tonight, Brixton.”

PS The story also got a mention in the Evening Standard.

Failings of newborn hearing screening programme

Earlier in the week, quality assurance reports were published that revealed that not all is well with the newborn hearing screening programme in England. NDCS campaigned heavily for the introduction of the programme, whereby every baby is tested for hearing loss shortly after birth, so we were pretty pleased when it was finally rolled out in 2006.

So the reports make for depressing reading, suggesting some serious localised problems in how the programme is being delivered. The worse affected area is London where estimates suggest that around 68 deaf babies – half of all cases of newborn deafness – are not being screened and are falling through the net. Given the importance of early diagnosis for making sure deaf children get the best possible start in life, these figures are very worrying. For one deaf child to be missed is bad. 68 is something else.

So what’s going wrong? NDCS is putting it down to:

* A lack of strong local leadership
* A failure to consistently follow up babies who leave hospital without being screened
* A failure by screening programmes to offer seven-day-a-week coverage to hospitals (sometimes screening cover is unavailable at weekends)
* Recruitment delays and poor retention of screening staff.

And what are we going to do about it? Well, we’ve launched a new campaign to tackle this. Our main target will be the primary care trusts (PCTs) who deliver the programme, getting them to come up with a plan of action. We also want the Strategic Health Authority for London to bang some heads together and ensure all PCTs in London work together and raise their game.

We’ve issued a press release to local media in London to raise awareness of the issue and we’ll be engaging with a range of London MPs to ask them to lobby their own PCTs. We’ve already managed to get some coverage from BBC news online.

We’ll keep you informed of progress. In the meantime, if you’ve got any thoughts on the campaign and the problems, let us know.

Deaf children on Guardian online video… and no subtitles

The Guardian is not having a good week.

I’ve already blogged about how an article was published that was derogatory to BSL users.

And now the Guardian have done a very interesting article about a young group of deaf children who have formed a music band… and uploaded a video of an interview with a band to the website. With no subtitles. And no transcript.

I don’t quite understand. The BBC did the same thing a while back. Does it not occur to people doing these video stories about deafness that without subtitles or a transcript, it will be completely inaccessible to deaf people? It’s not as if the technology isn’t out there.

It’s incredibly frustrating. And almost disrespectful. So I’ve written to the Guardian to complain – and will let you know how I get on.

UPDATED: After writing this, I discovered that the Guardian have now put subtitles on the online video. Which is great news, very impressive. I’d like to think it’s all down to my complaint… but I’m sure they had always intended to do so.

I look forward to the day when all online video content is subtitled!

I feel bad for having a go at them now…

Signed interpretation on TV: under attack from the Guardian

A while back, the Guardian did a fantastic set of articles on deaf people. On Monday though, I read a blog on the Guardian’s website which seemed to suggest that the Guardian’s own journalists don’t read their own paper.

This article was about sign language interpretation on a film shown on TV, by a Nick Lezard, called “Sign language strangles cinema”. It’s hard to know where to start – but the whole article suggested a profound ignorance, which was rather worrying to anyone who campaigns on deaf issues.

Nick shows a profound lack of understanding between British Sign Language and English, asking why deaf people cannot just use subtitles. Five minutes of basic investigation would have revealed to him that BSL is a distinct language. It is not just English with signs. It has a different grammar and structure. Asking a BSL user to follow subtitles is like asking a French man to follow a German film with Spanish subtitles. I imagine that most deaf people will in fact prefer to use subtitles to access TV. But there are a sizable minority who communicate primarily through British Sign Language and who will prefer to see sign language on TV.

Nick suggests the film was ‘ruined’ by the presence of sign language interpretation. If he doesn’t like it, that’s fine. And if all programmes were shown with signed interpretation, I can imagine he’d be very unhappy. But this is not the case. We’re talking here about a film that was on in the very early hours of the morning. In fact, most signed interpreted programmes are shown in the twilight zone, deliberating timed to avoid being too intrusive to hearing viewers. BSL users – who pay a full licence fee too – are forced to either stay up to after midnight or record programmes in order to be able to access a small number of programmes and films in their own languages.

Nick has the option of renting or buying a DVD and being able to watch it in English, or waiting till it is repeated on TV again. BSL users do not have this kind of ready access. It is a shame that Nick seems to want to begrude BSL users this small accommodation to their needs.

One of the comments to the blog – from ahumanist – summed up my feelings by saying:

In my understanding, the job of a journalist is to ask questions and investigate when he comes up against an issue. So when he turns on the box and sees “a fat little man” (I prefer not to think what Lezard looks like) gesticulating in the corner of the screen, then he might be prompted to ask some questions and investigate: Do deaf people prefer subtitles or sign language? Is poor literacy more prevalent amongst deaf people? Can one get DVDs film with sign language? Is the BBC filling a gap the private sector ignores? Are there technical problems is using the “red button” to switch on and off? These are the kind of questions I would expect a journalists to see as their task, and they should be paid for that kind of work. Lezard is a lazy man, his column inches of self-indulgence and ignorance are pure garbage.

I couldn’t agree more. The article was ignorant and mean-spirited. To see it appear on the website of a paper which I’ve always thought recognised diversity and the needs of disabled people and promoted inclusion is profoundly disappointing.

Classroom acoustics for deaf children

One of the key issues for NDCS as part of our campaign to close the gap in educational achievement between deaf children and their hearing peers is the extent to which acoustics in the classroom acts as a barrier to learning.

It’s quite simple really. If most deaf children are now taught in mainstream schools, it is extra important that acoustics in the classroom are of a high a quality as possible to enable deaf children to listen and learn effectively.

Sadly, NDCS comes across a lot of anecdotal evidence that acoustics in new built schools are not good enough. Common problems cited include massive open plan classrooms, high ceilings and poor sound insulation. In addition, the tendency towards big shiny glass buildings can also have the unintended side effect of making it harder for deaf children to lipread.

We’re going to be taking a closer look at this issue. We’re keen to understand whether the existing standards – known as Building Bulletin 93 – are good enough for deaf children. And, if so, are they being applied correctly by builders?

This is all in the context of a massive school rebuilding programme in England of both secondary schools and primary schools. It would be a massive wasted opportunity if these new schools were not built with the best possibe acoustics. And it would not just benefit deaf children – but all children and teachers too.

If you know of any examples of schools in the UK that have poor acoustics and in which deaf children find it difficult to learn, do let us know. It will really help us with our campaigns.

And if you work in a school and are concerned about the acoustics in it, take a look at the NDCS publication – the Acoustics Toolkit.

Getting answers to Parliamentary Questions about deaf children in Westminster

It was two days late but we finally got an answer to Tom Levitt’s parliamentary question on deaf children and what is being done to narrow the gap in educational attainment (which I blogged about last week). The reply, which came from Sarah McCarthy-Fry (Minister for SEN) and which constitutes an official statement on the issue, was:

We have been looking at the data on attainment gaps between hearing impaired children and their peers with the National Deaf Children’s Society, in the context of our public service agreement target to narrow attainment gaps between disadvantaged pupils and their peers. Our national strategies advisers are looking with local authorities at the proportions of children who are achieving less than levels expected for their age at Key Stages 2 and 4, and at the actions being taken to reduce those proportions over time. We have commissioned research from the National Children’s Bureau and the Thomas Coram Research Centre to establish why there are such wide variations between authorities on the identification and classification of children with all types of SEN but using deaf/hearing children and autism spectrum disorders as exemplars.

To help narrow outcome gaps between children with SEN and disabilities (including children whose hearing is impaired) and their peers, we committed £18 million in the Children’s Plan to: improve work force knowledge, skills and understanding of SEN and disability through better initial teacher training and continuing professional development; developing better data for schools on how well children are progressing, and guidance for schools on what constitutes good progress; and continue to strengthen the position of SEN coordinators in schools. The Training and Development Agency is currently consulting on proposals for nationally accredited training courses for new SEN coordinators.

We have also committing to funding, from September 2009, additional places on courses leading to approved mandatory qualifications (MQ) for teaching children and young people with sensory impairments. The TDA has been working with interested parties to establish arrangements for making best use of the funding we are making available.

In addition, we have committed £800,000 for a pilot project to raise awareness of British Sign Language and upskill the current specialist work force.

On the plus side:

* It’s good to get the Government’s own view on how it thinks it is working to close the gap. There are clearly a few work streams in place which is obviously good news and good to be reminded about. It’s all useful information for our Close the Gap campaign.

* NDCS got a mention. Which is always nice.

On the downside:

* There was a missed opportunity for the Government to set out a clear ambition to close the gap in attainment between deaf children and their hearing peers. This has always been implicit, and it’s always slightly disappointing that it’s never been made fully explicit.

* The answer doesn’t provide any numbers or targets for how it expects the gap to close. We may come back to the Government to press them on this issue.

Anyhow, it’s a useful reply, and one which can refer back to in our correspondence with Government officials. We’ll also be thanking Tom Levitt for raising this issue in Parliament and helping to raise awareness among other MPs of the deaf children and educational attainment.

We’re expecting some more questions to be tabled in Parliament next week on deaf children, which I’ll be blogging about soon.

Subtitled films at the cinema: where next?

I had a useful chat earlier this week with the people behind www.yourlocalcinema.com which provides listings of all subtitled films in the country. As an avid, but often frustrated, film-goer it was quite interesting to get an insider view…

Which is, overall, there has been an explosion in the availability of subtitled films in the past 5 years. In 2003, there were about 20 cinemas which could show subtitles. Now the figures stands at around 300. Nationwide, there are about 2,000 English language subtitled films every month. To someone who grew up with the choice of going to see a film and not have a clue what was being said or waiting until about 6 months until it came out on video, and missing out on hanging out on my friends, this is an impressive leap. I still remember the time I tried to make sense of the plot in the Mission Impossible film…

That’s the good news. But I wouldn’t be deaf if I still didn’t have major gripes about it all. The big one is the lack of choice. Subtitled films are not (apparently) popular with other film goers. A good cinema will show around 2 films with subtitles a week – and these will be at quiet times, and rarely at times when a deaf child’s hearing peers might want to go and see a film. I, for one, personally resent having to arrange my social life around the scheduling of subtitled films, or not being able to see a film at the same time as my hearing friends.

Are personalised caption screens the way forward? These are small screens that are set up in front of a cinema seat, on which captions are shown through some clever infra-red technology. They would be unobstructive to other cinema goers who would not see any subtitles on the main screen. Apparently, the technology is still developing but I couldn’t hope wondering if it would be a better way of realising the ambition of deaf children being able to walk into a cinema at any time and see any film with subtitles of their chosing… Should we be pushing for faster develoment and roll-out of this technology to see deaf children genuine choice at the cinema?

The Cinema Exhibitions Association has a Disability Working Group and we’re hoping this will be one of the items for discussion at the next meeting in December. So watch this space.

Asking questions about deaf children in Westminster…

One MP who has been very supportive of NDCS’s work is Tom Levitt. He’s one of the few MPs in Parliament with a qualification in sign language and has given deaf awareness training in a previous life.

And, prompted by our campaign to close the gap in educational attainment between deaf children and their hearing peers, he’s also tabled a parliamentary question on our behalf which we’ve been told will be getting a reply on the 10th November. The question is:

To ask the Secretary of State for Children, Schools and Families, what progress has been made in narrowing the gap in educational attainment between deaf children and their hearing peers; and what further steps he intends to take to further narrow the gap.

Will be looking forward to seeing what the Department for Children, Schools and Families say…