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.

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

Emma

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.

 

5 articles the Campaigns Team has been reading this week

NDCS - Liz Partridge, Campaigns Manager, Freedom of Information

Liz Partridge, Campaigns Manager

Every week we’ll be compiling a short list of articles that we’ve noticed in the news and want to share with you. Some of them will be about campaigning and others will be about changes to policy, or relevant policy areas, which may be of interest.

1)    Maya Angelou’s majesty, according to you: ‘how can you love someone if you don’t love yourself?’, Lilah Raptopoulos, The Guardian

NDCS Vice President Maya Angelou has passed away this week. The Guardian has collected some of the tributes to her from around the world.

2)    NSPCC launches survey with Limping Chicken to find out if deaf adults know where to ask for help if they’re concerned about a child, The Limping Chicken

NSPCC became concerned about the lack of deaf adults contacting the charity about children and so have launched this survey to find out how aware deaf adults are about the different avenues they can explore to get advice.

3)    The world through a deaf person’s ears: Video reveals what it’s like to listen to sound using a cochlear implant, Sarah Griffiths, Daily Mail

Scientists have released a video showing what some deaf people can hear through the use of cochlear implants.

4)    See Hear: When deaf videos go viral, William Mager, BBC Online
The tools to film, edit and upload video are cheaper and more accessible than ever before. A smartphone and a laptop with basic editing software are all you need to create something which can be seen and shared round the world by millions.

5)    Campaign group challenges BBC Scotland claims of lack of indyref material for deaf, Newsnet Scotland

A report by BBC Scotland that highlighted an apparent lack of referendum related material for deaf people has been challenged by one of Scotland’s leading sign language groups.

Have you seen any articles this week that you liked? Post the link to them in the comments section below and we’ll check them out!

11 things you didn’t know about childhood deafness

Jonathan Barnes - NDCS, articles we’ve been reading this week

Jonathan Barnes, Campaigns Assistant

 

This blog was co-written with Vicki Kirwin, Development Manager, at the National Deaf Children’s Society (NDCS). 

 

1)   More than 90% of deaf children are born to hearing parents meaning new parents have no previous knowledge about deafness and rely on good support and information to understand how best to help their child

2)   You may know that there are 45,000 deaf children in the UK. But did you know that 1 in 5 pre-school children have a temporary deafness caused by glue ear at any one time? That’s more than 770,000 young children experiencing deafness right now.

3)   Classrooms are noisy places and even a child with mild hearing loss can miss as much as 50% of classroom discussion without appropriate support.

4)   Not all deaf children are born deaf. At least half develop deafness during childhood. This can be because they inherited a gene that causes childhood-onset deafness, or because of infection, illness or injury.

5)   The word ‘cochlea’ comes from the Latin for ‘snail shell’. The cochlea has 2.5 turns in its ‘shell’.


6)   The inner ear is where the cochlea detects sound and turns it into electrical signals. These signals are sent to the brain which interprets or makes sense of what has been heard.


7)   There is some great technology to help support a lot of deaf children with their learning and development.

8)   Deaf children are just as likely to enjoy music and develop an interest in playing musical instruments as hearing children, if exposed to them. NDCS supports music teachers and venues in being deaf friendly.

9)   If given the right opportunities deaf children can learn and use two or more languages, including sign language, English and other spoken foreign languages.


10)   There are at least 137 different sign languages used around the world (the one shown below is not one of them). Find out more here.

11)   Given the right support deaf children can do anything their hearing friends can. But they can’t clean their ears with their tongue unlike this giraffe whose tongue is 21-inches long!

 

The National Deaf Children’s Society are working to bring about a world without barriers for all deaf children.

Join us to campaign today.

5 articles the Campaigns Team has been reading this week

Alex Chitty, Campaigns Assistant at NDCS - Stolen Futures

Alex Chitty, Campaigns Assistant

Every week, we’ll be compiling a short list of articles that we’ve noticed in the news and want to share with you. Some of them will be about campaigning and others will be about changes to policy, or relevant policy areas, that may be of interest.

1)    Thousands of adopted children miss out on education support, charity warns, Neil Puffett, Children and Young People Now
Adopted children as young as nine are missing out on additional support in school, due to an “arbitrary” government-imposed cut-off point, the charity AdoptionUK has said.

2)    Gene Therapy Makes Cochlear Implants Much More Effective, Rachel Barclay, Healthline
Scientists from the University of New South Wales, Australia, have found a way to use the electrodes in cochlear implants to apply targeted gene therapy and regrow damaged auditory nerves in the ear.

3)    Stephen Sutton makes ‘largest’ cancer charity donation, BBC
A cancer charity says it has received its largest ever individual donation after a teenager with terminal cancer raised more than £1.6m.

4)    A child’s eye view of adoption, Ian Burrell, The Independent
Three television programmes about the adoption process trigger an emotional response within British hearts and bring a new level of public understanding to an issue that has long been afraid to expose itself to public gaze.

5)    Why those working in charities need to adopt an activist mentality, Liam Barrington-Bush, The Guardian
Liam Barrington-Bush discusses the hope “constructive subversion” may offer charity workers when seeking to affect change.

Have you spotted any good articles around this week? Leave a comment below to share them with us!