New guidance increases cochlear implant eligibility

Today the National Institute for Health and Care Excellence (NICE) published new guidance on who should be considered a candidate for cochlear implants.

Background

Lady looking at the camera, with a PC desk next to her and a bookshelf behind her.

Vicki Kirwin, Development Manager (Audiology & Health), National Deaf Children’s Society.

The previous guidance was issued in 2009. The guidance forms part of the Technical Appraisal portfolio and as such the NHS is expected to make funding available for anyone who meets the criteria and wishes to have the procedure.

The previous guidance said that children could be offered two cochlear implants if their hearing was worse than 95 dB (profoundly deaf) at 2000 and 4000 Hz (the higher frequencies which are considered most important for speech understanding), if hearing aids weren’t able to provide sufficient benefit to be able to understand speech.

We felt that the previous candidacy criteria was dated and no longer fit for purpose. The UK had slipped into a position where we had one of the highest candidacy requirements in the developed world.

Recent research found that cochlear implants would be appropriate for children with lower hearing thresholds than the current guidelines and this meant that many children with profound deafness and cochlear implants were hearing better than children with severe deafness and hearing aids.

Whilst NICE guidance should only be seen as guidance and clinical judgement should also be applied, in practice NHS England refused to fund candidates outside of the identified criteria. This left a significant number of frustrated families (and professionals) who knew of the potential benefits but were unable to access services due to funding restrictions.

We got involved in a research Consensus Group and worked with both the British Cochlear Implant Group (BCIG) and the Action Group on Adult Cochlear Implants so that there is a uniform response to NICE from the sector.

New guidance

Now says that children with severe to profound deafness (defined as hearing only sounds that are louder than 80 dB HL at 2 or more frequencies of 500 Hz, 1,000 Hz, 2,000 Hz, and 4,000 Hz) in both ears, and who do not receive adequate benefit from hearing aids are candidates. Adequate benefit is defined as speech, language and listening skills appropriate to age, developmental stage and cognitive ability.

The National Deaf Children’s Society’s position

We thoroughly welcome these changes. NICE haven’t gone as far as we would have really liked (such as providing candidature for children with profound unilateral deafness or children with aidable hearing in one ear but not the other) but it is a massive improvement and means we won’t be behind many European countries as now.

However, the National Deaf Children’s Society’s work does not end here. The new candidature means that many more children now meet the criteria for cochlear implant assessment for already stretched services with ongoing NHS funding pressures. We will be working hard to ensure that services are adequately funded, available, and of good quality for every family that needs them.

If you need any further information or help and support contact our Helpline on 0808 800 8880 (calls are free from all landlines and major mobiles companies), live chat or helpline@ndcs.org.uk.

Changing Technology: How we help you keep pace

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Kim Hagen, Technology Research Officer, National Deaf Children’s Society

I recently came across an old survey we ran in 1984. One of its main conclusions was that parents felt they had limited access to easily understood information about technology. Using technology can be quite daunting at the best of times, and it’s especially hard to see its benefits if you don’t have all the relevant information!

We’ve worked hard in the past decades to ensure families have the information they need to make an informed choice on the right technology to support their child. We cover technology in our events for families and parents of deaf children. Our Roadshow bus delivers technology sessions to schools around the UK. We sent out 1,866 copies of our ‘How Technology Can Help’ and ‘How Radio Aids Can Help’ booklets last year. We continue to campaign for better provision of technology to deaf children and young people; last year, we published research on the benefits of using radio aids in the early years at home. And let’s not forget our Blue Peter Technology Loan Service that went live in the mid-1980s. The name has since changed to the Technology Test Drive, but the principle is still the same: a free-of-charge technology loan service offering deaf children and young people, their families and the professionals working with them the opportunity to borrow products and try them out in their own environment.

We have close to 100 different kinds of products on our Technology Test Drive. Technology is constantly evolving and children want to be seen with the latest tech. That’s why we continuously update our stock. And we recently launched the Borrow to Buy scheme in which our members can borrow all the latest Phonak Roger radio aids, soundfield systems and accessories. But remember: despite the changes in technology the fundamental principles of how technology can benefit deaf children don’t change that much. A few examples:

• Amplified headphones can help young children listen to videos on an iPad and develop their vocabulary.
• Alarm clocks with a vibrating pad can help young children learn to tell the time and older children to get up on their own and be more independent.
• Radio aids can help your child make the most out of education and fulfil their true potential.
• Streamers can be a great way for deaf young people to make phone calls on their own, taking control of their lives and embracing responsibilities.
• Direct input leads can be used to listen to music. They look similar to the in-ear headphones a teenager’s peers may have, making them fit in and helping to develop their social identity.

The summer holidays are nearly here. Many of us might even have a break from our everyday hectic lives. Why not take this time as an opportunity to try out technology with your child? Access our Technology Test Drive, put in a request, and… happy testing!

Shouldn’t all young deaf children and their families have the right to a Radio Aid?

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Emma Fraser- Teacher of the Deaf

Everyday life can be busy and noisy with family gatherings, trips out to playgrounds and activity centres and frequent journeys in the car and the buggy. Having two children myself I know how loud we all can be particularly when my six siblings and their children come round. In fact recent research indicates that young children can spend up to 25% of their day in noisy environments. So knowing what we know about how important it is for young children to hear spoken language in order to develop good communication and language and how babies have to learn how to be good listeners, why can’t all deaf pre-school children be considered for a radio aid at the same time as they are fitted for a hearing aid? 

We think every family should have the right to try a radio aid, from an early age, so they can see if it would work well for them. Our research shows that it can have big benefits. If you would like to try one, you can talk to your audiologist and Teacher of the Deaf about radio aids. As soon as your child has hearing aids or a cochlear implant, discuss options with your Teacher of the Deaf about trying out a radio aid at home. It may take some getting used to and you don’t need to use it all the time, but when you think about the times your child is in a noisy place or behind you in the car, it will be then that your child could really benefit from hearing your voice clearly.

So here are some things you may want to consider when using a radio aid with a baby or toddler.

  • Think about the best time to use the radio aid for you and your child, it may be in the car, when you are sharing a book with a sibling, or playing with your child at toddler group. Take a look at this short video to see how a family used a radio aid to help communication.
  • All the family can use the radio aid, so pass it around when another family member is interacting with your child
  • Radio aids use up battery power so you will need to change the batteries in your child’s hearing aids more frequently
  • Place the microphone carefully. About 15cm from your mouth is best and avoid wearing anything that will knock against it as the sound will travel straight into your child’s ears.
  • Don’t forget to use the mute button, there are some conversations your child doesn’t need to hear.

Unfortunately, radio aids are not always available for use in the home or for pre-school deaf children. We’re campaigning for them to be more widely available – local authorities will need to ensure that services have the resources to fund, maintain and monitor the equipment.

Remember the best communication happens in a quiet environment, when you are close to you child, they can see your face and you are sharing experiences, but when this isn’t possible consider trying a radio aid. If you’d like more information about radio aids, take a look at our website.

 

“Involving deaf young people in the technology they use is the best way to make sure it meets their needs for the future”

Lucy Read

Lucy Read, Head of Children and Young People Participation

Technology has come a long way over the past couple of decades. Those of you who can remember dial-up networks, floppy discs and MSN will be well aware of how much technology has changed over time.

If you have absolutely no idea what I’m wittering on about ­– that is proof of just how quickly technology moves on. What was current one minute and everyone was using can quickly change and adapt with people’s changing needs.

But how often do deaf young people get to share their needs, wants and wishes for the technology they use or might want? Our experience is not very often.

We are hoping to change this by launching an exciting new Design Your Own Tech competition for young people aged 12–18; giving deaf young people across the UK the chance to showcase their tech talents.

We created the competition to raise awareness of the daily challenges the UK’s 50,000 deaf youngsters face, and of how technology can help them to overcome these.

Budding deaf designers aged 12–18 have until 13 October to submit their innovative ideas for the tech of the future.

Two lucky winners will get to present their ideas to product manufacturers and those with the power to make their designs a reality. They will also get a prize for their school, and can choose from an iPad, VR headset or Amazon vouchers.

For more information and to enter the competition, go to www.buzz.org.uk.

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Growing up in a mainstream school

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Emily Meacher (aged 4 years) Policy and Campaigns Support Assistant

Jake’s recent blog got me thinking about my own personal experience at primary school, and how I wasn’t alone in these experiences. And so below are some random reflections of my time at Codicote primary school.

 

I was the only deaf kid in school- children used to say to me ‘why are you death?’ and I would have to try and explain at 6 years old how I am deaf and not actually dead.

I used the deaf card (I started young!) to get out of recorder sessions- I couldn’t bear the noise (can anyone?) and felt elated when I was let off.

Children were curious about how my radio aid worked, so the teacher had the bright idea of sending me out into the playground where everyone watched me. The teacher would say something into the aid but I didn’t understand a word. I felt a bit miffed about being sent out whilst the whole class gawped through the window.

I used to take part in school plays, and didn’t hear or understand any of the songs- I would just move my mouth and pretend to go along with it.

I used to go to my friends’ sleepovers and whilst a lot of the kids were up late chatting in the dark, I would be asleep. I would wake up and see the kids playing with my hearing aids, trying to put them into their ears out of curiosity.

I had a best friend Claire, who I am still best friends with to this day whose mother, told Claire she was worried about her hanging out with me- as her voice had started to get ‘lazy’- and that she was starting to sound like me! Of course, Claire didn’t listen thankfully.

Although there were times when I struggled, overall I received good educational support in school and if it wasn’t for the support there, I don’t think I’d have passed the entrance exam (this has now changed -they no longer have an entrance exam) to get into Mary Hare, secondary school. It was at Mary Hare that I developed my deaf identity.

Since my time working at the National Deaf Children’s Society, it pains me to think that some deaf children out there do not get the same support I had growing up. Some deaf children are coping, rather than thriving. This needs to change – we are working hard to challenge proposals to close resource bases and reduce support – one example being in Manchester. Hazel, our Regional Director for the North West and Sally, our Policy and Campaigns Officer fought hard alongside passionate parents, and in the end we managed to reduce the amount of budget cut to the service. Not only that, but we also managed to save one of the two resource bases under threat. Great news!

If you want to get involved in campaigns like this, then join with me and the Policy and Campaigns team by signing up to our Campaigns Network here: http://www.ndcs.org.uk/help_us/campaigns/campaign_with_us/campaign_network.html

 

What do we know about communication support for deaf people?

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Ian Noon, Head of Policy and Research, National Deaf Children’s Society

Last week, the Department for Work and Pensions (DWP) published a monster 142-page document summarising the responses it received to a review on communication support for deaf people. The aim of the review was to try and identify what we know about the supply and demand of professionals (such as interpreters, speech-to-text-reporters, etc.) whose role it is to provide support to deaf people with their communication. We submitted evidence back in 2016 setting out what we knew then about communication support for deaf children and young people.

So what have we learnt from the DWP report? Here are my own top five take-home messages from the report.

  1. Nobody is quite sure how many deaf people there are. For example, we have a very rough ball-park figure on the number of deaf children from the Consortium for Research into Deaf Education – but we know that those figures, whilst the best available, are not 100% reliable.
  2. Nobody really knows how many communication support professionals there are out there either. It’s not something that any government department appears to be measuring.
  3. However, there is a lot of evidence that there the number of communication support professionals isn’t enough. Lots of respondents gave examples of unmet demand among deaf people. For example, there is evidence that too many deaf children are being supported by communication support workers who don’t have an advanced qualification in sign language.
  4. It became clear from reading the report that the term ‘communication support workers’ (CSWs) means different things to different people. We at the National Deaf Children’s Society would use the term to refer to a type of specialist teaching assistant, someone who would provide support to deaf children in the classroom, with signed support as necessary. However, we wouldn’t see them as “interpreters” because CSWs need to be able to do much more than just interpret what the teaching is saying by, for example, supporting deaf children with notes, explaining concepts, and so on. It’s clear though that in other areas, deaf people are being supported by a professional described as a ‘communication support worker’ when really they should be supported by an interpreter. The report points to a need for much more clarity on the role of CSWs and what skills they need in different situations.
  5. Lots of people feel that technology – such as remote sign language interpreters or speech-to-text-reporters – can really help deaf people. However, there was a unanimous view that this cannot be seen as a substitute for ‘real life’ communication support. Indeed, many people were concerned that new technology was being used as an excuse to reduce support inappropriately.

So what happens next? We’re not yet sure. The DWP report is literally just a summary of responses and doesn’t set out any recommendations or actions for the Government.

On our side, we’d be keen to see the Government take action to improve data on deaf children and also to ensure there are more, better-qualified, communication support workers for deaf children and young people. We’d also like to see speech-to-text reporters being more widely used, particularly for older deaf young people, including those at university. We’ll be pressing the Government to set out what action it’ll be taking in response to the report so watch this space.

 

5 Ways A Radio Aid Can Help A Deaf Toddler

Alison Taylor, Senior Information Editor, National Deaf Children’s Society

Compelling evidence shows (see the research) that giving deaf children radio aids in the critical early years, before they start school, can be hugely beneficial for developing their language and supporting communication. But in which everyday situations can they help? Here’s our top five.

1. Family time at home
Whether it’s playing a game together, reading a story before bedtime or talking to your child when they’re in the garden or another room, a radio aid can help deaf children hear their parent’s voice clearly and directly, making them feel connected to their parents and helping build strong relationships.

2. Communicating in the car
When you’re driving you can’t turn to your child to sign, or for them to lip-read you, so being able to communicate effectively is vital when parents are travelling with their child. Radio aids can cut through the background noise of the car engine and the road, allowing you to soothe them if they’re having a tantrum, talk about where you’re going in the car and even play games to make the journey more fun!

3. At nursery or pre-school
Early years settings can be fantastic places for children to get a head start in developing their language and communication before they start school, but they can also be noisy places. Nursery staff can use a radio aid to get a deaf child’s attention to make sure they’re taking part in activities fully and mixing with other children, as well as starting to learn.

4. Staying safe when out and about
You’re at the park and your child is about to walk into the path of a swing, or worse – they let go of your hand and are headed straight for a road – how do you stop them when they can’t hear you calling after them? A radio aid means that your child can hear you at a distance and it will cut through the background noise so you can alert them to danger.

Helen and Alex tell us how a radio aid keeps their three-year-old daughter, Gwen, safe when crossing the road and riding her bike.

5. Actually, whenever they can’t see you
As a parent of a deaf child, you’ll often need to stop what you’re doing and face your child to get their attention and to talk to them, whether you’re out shopping, your child is in a pushchair or in a seat on the back of your bike – whenever they can’t see you. Being deaf aware and creating good conditions for listening are still important, but a radio aid can be a great help for busy parents in those everyday noisy situations that you just can’t control.

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Think radio aids might be right for your child?

Find out more about radio aids and how to get one by downloading our booklet for families How Radio Aids Can Help.

Try out a radio aid for free through our Technology Test Drive service.

Read our Quality Standards for the Use of Personal Radio Aids which sets out a common approach to providing radio aids for deaf children.

Watch our video of a group of mums who tell us how they use a radio aid when out and about with their child.