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.

Disability Matters – e-learning to inform and inspire!

Vicki Kirwin Development Manager (Audiology & Health)

Vicki Kirwin Development Manager (Audiology & Health)

“Over 60% of Britons say they are not confident communicating with a child who is deaf”

(Disability Matters Launch Report, Feb 2015)

I recently attended the launch of the new Disability Matters e-learning resource with our CEO Susan Daniels. Disability Matters is a suite of online and group learning modules that aim to tackle the inequalities that disabled children and young people face in their daily lives. It was co-developed with disabled young people and parent carers and the practical tips delivered within the programme are based on real, lived experiences. Through words, pictures and signs, deaf and disabled children, young people and their families challenge learners to reflect on their own attitudes and beliefs about disability and explores the practical things people can do that could make a real difference to their health and wellbeing.

So far 27 modules are live with more to come. One of the first live modules is Deaf Communication Matters which was developed by myself and Lucy Read (NDCS Head of Youth Participation). It uses video of several of our former YAB members and material from My Life My Health campaign with them sharing some of the typical barriers they encounter and showing the learner simple steps to take and adjustments to make to overcome those barriers and enable successful interaction with them. The module takes about 20 minutes to complete.

The programme is designed to support organisations, their workers and volunteers across the health, education, social care, criminal justice, travel and leisure, community sectors, as well as friends and extended family, in developing the communication and problem-solving skills required to engage confidently with disabled children and young people.

All resources are FREE and are designed to be easy to use and done at the learners pace.

Have a look at the site, register and have a look through the many modules – there is bound to be something of interest and value to everyone – including communication, advocacy, safeguarding, confidence, relationships, bullying, inclusion, decision making etc. You could complete them all with one 20-40 minutes session a week for a year! But for ease of decision making the system will recommend a shorter list of modules based on their profession or sector selected when registering.

https://www.disabilitymatters.org.uk

10 questions parents ask NDCS about audiology services

Vicki Kirwin Development Manager (Audiology & Health)

Vicki Kirwin, Development Manager (Audiology and Health)

1)    How often should my child be seen by an audiologist?

When children are very young or have complex needs appointments may be as frequently as every three months. As children get older the number of visits will gradually decrease until school age when they should be seen at least once a year. Children who wear hearing aids should be offered regular routine appointments so that their hearing and ears can be checked, hearing aids adjusted if necessary and their progress with the hearing aids monitored.

2)    Help! My child’s hearing aid isn’t working. What can I do?

It might be something very simple that you can fix yourself. Grab your child’s hearing aid care kit and watch this video to help you find the problem. If it still isn’t working contact your child’s audiologist as soon as possible. Faulty hearing aids should be replaced within two days of you notifying audiology of a problem.

3)    Arghhhhh, this whistling is driving me mad! What can I do?

The most common reason for whistling in children’s hearing aids is because they have started to grow out of their earmoulds allowing sound to escape through the gap around the edges of the mould. When this happens children need to have impressions taken for new earmoulds. This video also gives some suggestions on managing feedback.

4)    Can my child choose the colour of their hearing aids?

Yes! NHS hearing aids are available in a range of hair colours that can be used with clear earmoulds to blend in as much as possible or in a range of bright colours to match their favourite colour. Earmoulds are also available in clear with glitter or with pictures or logos inside them. You can also decorate your child’s hearing aids .

5)    I’ve run out of batteries, what should I do?

The NHS will provide a supply of batteries free of charge for your child’s hearing aids or cochlear implant. You may also be able to get replacement batteries from your local health centre or GP surgery, Teacher of the Deaf, or audiology clinic. In an emergency it is possible to purchase batteries for hearing aids from most high street chemists and hearing aid dispensers.

6)    My child has lost their hearing aids, will I have to pay for them?

The NHS provides all hearing aid equipment on a permanent loan basis and it always remains the property of the NHS. The NHS may charge people for the loss or breakage of hearing aids but there are guidelines they have to follow and some people are exempt from charges. For more information on possible charges and insuring NHS equipment either download the NDCS policy on lost hearing equipment and insurance or contact us.

7)    Can I get help with travel costs to the hospital?

You may be entitled to help with your travel costs through the ‘Healthcare Travel Cost Scheme’ (HTCS) if you are under the care of a consultant and receive either Income Support, Income-based Jobseeker’s Allowance, Pension Credit Guarantee Credit, are named on a NHS tax exemption certificate or qualify under the NHS low-income scheme. Further information is available here.

8)    When will my child transfer to the adult audiology service?

Some services specify an age to transfer, usually between 16 and 21. Your family should be involved in the decision on when the right time is for them to transfer. You should be offered an appointment with the adult service before the paediatric service discharges you from their care so that you have time to ask any questions or raise any concerns beforehand. Information for young people about moving on to adult services can be found on The Buzz website.

9)    Can I give my opinions or get involved in service improvement?

Yes. All hospital departments have a suggestion box and audiology services will also routinely ask for feedback to find out if their service users are happy with the service provided. Some services also arrange events for children and young people to ask their opinions face-to-face. Most services have a local Children’s Hearing Service Working Group (CHSWG) or similar group and you can get involved in this to give your opinions on the service

10) What can I do if I am unhappy with my audiology service?

The first step should be to speak to your Lead Clinician, Keyworker or the Head of Service and explain your concerns to them. If your concern is a general one or you have suggestions for ways to improve the service provided you could also contact your local Children’s Hearing Service Working Group (CHSWG).

If you want to make a complaint you can contact the hospital PALS (Patient Advice and Liaison Service) who can discuss the situation with the department for you. Every Hospital Trust has a complaints procedure that is available in waiting areas, from their website or you can request it from them directly. Trusts are obliged to reply to you in writing within a specified time. For information on the NHS complaints procedure click here.

You can read more about what you can expect from your child’s audiology service here.

If you have concerns or are having difficulties accessing your audiology service, contact our Freephone Helpline on 0808 800 8880 or email them at helpline@ndcs.org.uk

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.