KidsAudiologist

Archive for the ‘late-onset hearing loss’ Category

Yesterday I attended the launch of the new National Commissioning Framework for Hearing Loss Services.

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This is a document was developed by members of the Hearing And Deafness Alliance (a group of representatives from professional organisations, charity sector and patient groups) with NHS England and follows the launch of the Government’s cross-sector and cross-departmental Action Plan on Hearing Loss last year.

The new framework is aimed at supporting NHS commissioners in ensuring they understand the importance of services for people with hearing loss and the potential impact of un-managed hearing and communication difficulties. The document clearly indicates that it covers the whole age range from birth onwards but understandably given the much larger numbers involved, does have some emphasis on age-related hearing loss. But section 3.1 does make it clear that CCGs should be familiar with their commissioning responsibilities in relation to hearing and wider audiology services and appendix 3 helpfully clarifies the responsibilities of CCGs, NHS England and PHE in the complex environment of commissioning the various parts of a child’s audiology journey. Finally, section 8 stresses the need to move towards more outcome based commissioning and the crucial role of service specifications in setting out the key requirements for delivery of the service.

I was therefore very pleased be invited onto the Children’s Services Content Group and to lead on developing a model service specification for commissioners on paediatric audiology services along with a series of suggested outcome measures for children plus service performance outcomes, that services and commissioners can use to measure quality of the service. A link to this document is contained within the Framework or can be downloaded here. This is the first time we have had children’s outcomes used as commissioning measures of quality and we look forward to feedback and developing these further.

I’m now looking forward to working with NDCS colleagues to share this suite of documents widely with our networks, including service professionals and commissioners.

 

 

This article was originally written for the Netbuddy website which has since merged with Scope where an edited version appears. I have re-published it here for Learning Disability Week 2015.

https://www.mencap.org.uk/get-involved/learning-disability-week

Research suggests that as many as 40% of adults with a learning disability have a hearing loss although for some groups this figure can be much higher. For example, hearing loss affects up to 75% of young people with Down syndrome.

Hearing problems may be unrecognised or undiagnosed because behaviours associated with hearing loss may have been thought of as being part of the learning disability, or because local audiology services are not accessible to them.

Unrecognised and unmanaged hearing loss can cause or contribute to speech or language delays, difficulties learning and reading, and cause difficulties communicating with others. Hearing loss can therefore have a significant impact and exacerbate the effects of an individuals learning disability.

Some people are born with a hearing loss but for many people it develops later in childhood or as an adult.

Types and levels of hearing loss

Conductive hearing loss happens when sound cannot pass efficiently through the outer and middle ear to the cochlea and auditory (hearing) nerve. Conductive hearing loss is most common in childhood and is usually caused by ‘Glue ear’ (Otitis media). Glue ear is a build up of fluid in the middle ear that makes it harder for sound to pass through to the inner ear. Glue ear causes the hearing to fluctuate and often clears up on its own without needing any treatment. However, for some children with learning disabilities glue ear may persist longer term.

Sensori-neural (or nerve) hearing loss happens when there is a fault in the inner ear (most often because the hair cells in the cochlea are not working properly) or auditory (hearing) nerve. Sensori-neural deafness is permanent. Sensori-neural deafness is most common in adulthood and is usually caused by normal wear and tear of the ear and the ageing process. In some individuals with learning disabilities this ageing may happen much earlier than would be expected in the general population.

It is also possible to have a sensori-neural and conductive hearing loss together and this is known as mixed hearing loss.

There are different levels of hearing loss that are measured in decibels (dB) and described as mild (21-40 dB), moderate (41-70 dB), severe (71-95 dB) or profound (95+ dB).

Balance

As well as hearing our ears also help us to balance. The brain uses information from the eyes (what we see), our body (what we feel) and the inner ear to balance. The semicircular canals in the inner ear are three tubes, filled with liquid and movement-sensitive hair cells. As we move, the fluid moves. This creates signals that are sent to the brain about balance.

Balance problems can occur when the organ of balance in the inner ear does not work properly (vestibular hypofunction). Children can be born with this or acquire it with illness or trauma. With hypofunction development of balance function may be delayed and this might mean that babies and young children take longer to reach developmental milestones such as sitting unsupported and walking. Older children may have difficulties with certain activities such as learning to ride a bike. This is called imbalance.

Other types of balance problem can give rise to dizziness or vertigo or episodes of unsteadiness. These can occur at any time in childhood.

Possible indicators of a hearing loss

The list below contain behaviours that can indicate a problem with the ears or a hearing loss. It is also possible that they could be explained by a persons learning disability but it is worth asking for a hearing test to rule out any hearing difficulties particularly if it is noticed for the first time or it is a change from their normal behaviour:

  •  Does not respond when called by name
  • Does not respond to verbal instructions or needs visual clues
  • Watches faces intently
  • Appears to hear some voices better than others (e.g. low or high pitched)
  • Has difficulty following a conversation in a group (e.g. when there is a change in topic of conversation)
  • Struggles to hear conversation in the presence of background noise
  • Sits very close to the television or turns the volume up loud
  • Is upset by loud noises
  • Is startled by people approaching from behind who they haven’t seen/heard
  • Speaks very quietly or loudly, or vocalises very loudly
  • Breathes through their mouth and has a ‘blocked nose’ most of the time
  • Has discharging ears and/or ears have an unpleasant smell
  • Frequently rub or poke the ears
  • Problems with balance

What can be done to help?

Ask your GP for a referral to an audiology service. For children you should be referred to your local paediatric audiology service. For adults ask your GP to refer you to an audiology service that runs special clinics for adults with learning disability. Hearing tests can be carried out from birth on children and adults with all developmental abilities.

The audiologist will work with the individual, family, carers, key worker and support workers to find the most appropriate hearing tests and best way to get hearing test results. Sometimes this can mean undergoing a series of appointments. It may be necessary for some individuals to get used the audiologist, department and procedures very gradually, including getting used to having their ears touched etc. The audiologist will discuss with the individual, family and carers an Individual Management Plan for assessing the hearing and managing any hearing loss that is identified.

There is a wide range of equipment that can be helpful including:

  • Hearing aids
  • Radio aids or soundfield systems (specialist listening equipment mostly used in schools)
  • Assistive listening devices that can be used with or without hearing aids, such as amplified headphones, amplified telephones, flashing and/or vibrating doorbells, alarm clocks and fire alarms

People with learning disabilities communicate in lots of different ways including speech, makaton or other sign language, communication systems using pictures and symbols or a combination of these. Additionally it can be helpful just to know that an individual has hearing difficulty as this means that parents, carers, teachers, family and friends can make simple adjustments that make hearing and listening as easy as possible. Here are some communication tips that will help:

  •  Make sure you have the person’s attention before you start to talk to them.
  • Make sure you are facing the person you are talking with and maintain good eye contact.
  • Try to be get down to the same level as children, or adults who use wheelchairs, and allow some space for them to see you clearly.
  • Use a well-lit room and don’t have your back to a window, as this creates a shadow and makes it difficult to read facial expressions or to lipread.
  • If you are naturally a fast talker you may need to slow down a bit, but try to speak clearly, naturally and at a normal pace. Don’t shout as it distorts lip patterns and facial expressions, and can appear as if you are angry.
  • Try to make sure that background noise is kept as low as possible. A room that is carpeted or that has curtains will help cut down the effects of noise in a room.
  • Don’t be afraid to use gestures and facial expressions to support what you say.
  • While speaking don’t smoke, eat or block the view of your face. Keep beards or moustaches trimmed and also remember that glasses and sunglasses can make it difficult to maintain eye contact.
  • When in a group, speak one at a time and indicate when a different person starts speaking.
  • Make sure you make it clear when there is a new topic of conversation.
  • Some words or signs may not be easily understood or may not be in the vocabulary of the listener. Try a different word or sign with the same meaning.
  • Always give plenty of time for the person to respond to anything you say.
  • Pause between sentences and check the listener has understood you, and that you have understood them. Encourage them to stop you if they don’t understand what you are saying.

Further information and advice

For further information on any aspect of hearing loss, equipment, or accessing audiology and hearing tests contact:

 

For children – National Deaf Children’s Society (NDCS)

Freephone Helpline 0808 800 8880 (Monday to Thursday 9.30am-9.30pm and Friday 9.30am-5pm)

Or email helpline@ndcs.org.uk

 

For adults – Action on Hearing Loss (formally the RNID)

Information Line 0808 808 0123 (Monday to Friday 9.00am-5.00pm)

Or email informationline@hearingloss.org.uk

 

Scope have an active online forum to ask questions and get support from other families, including a ‘Community Advisor’ section where professionals will reply to your queries. Catch me here if I can help.

 

Useful Resources

Hearing and Learning Disabilities (HALD)

HALD is a special interest group for professionals who work in ENT and audiology services. Their website contains example information leaflets developed for adults with learning disabilities about audiology appointments, including easy read language as well as photos and symbols including:

  • using and looking after hearing aids
  • ear infections
  • wax
  • how people can help

 

Foundation for People with Learning Disabilities

The Foundation for People with Learning Disabilities has published Good health care for all: What can I expect from the NHS? that provides practical hints and tips for people with learning disabilities, family carers and anyone who supports a person with learning disabilities on how to go about using the NHS, what to expect, real life examples of challenges and how they can be overcome as well as some advice about how to get help and some useful contacts to get more information.

 

General Medical Council’s Learning Disabilities website

The General Medical Council (GMC) has launched a new website which aims to help doctors provide better care for people with learning disabilities by:

  • identifying the issues
  • highlighting patient perspectives
  • showing how to put GMC guidance into practice.

The website expands on the guidance in Good Medical Practice and Consent and demonstrates how it applies to practices when treating patients with learning disabilities.

 

 

 

The new NDCS weekend for teenagers with acquired, progressive, or late-onset deafness and their families  has been a while in the planning and last weekend it finally arrived. As did the snow! Which was a shame because it meant three families weren’t able to make it but for the ones who made it through the snow I’m sure they got a huge amount out of the weekend.

Over the weekend we ran three programmes – one for the adults, one for the deaf teenagers, and one for their siblings. There were opportunities to share experiences, information sessions, and fun activites all in a relaxed environment. I led an information session with all the teenagers and their siblings on the ear, hearing and deafness. All the teenagers had become deaf in the last 18 months and all were using hearing aids or cochlear implants. Many young deaf people know very little about their own hearing or the technology they use and large numbers told NDCS they want more information on these topics.  I have often assumed this to be that, as audiologists and other professionals working with deaf children, we’ve often concentrated on sharing information with families – especially in the early years – and forget to share with children directly as they get older or maybe assume they’ve picked it all up along the way somehow. I was pretty surprised that the teenagers at this weekend appeared to know very little because they were all older when their hearing started to change and we might assume they’d been more involved in their own care. So I thought I’d share an outline of how our information session ran and maybe it will help local services to think about something similar for their kids or inspire new ideas – let me know!

I have a small overnight suitcase that is packed with demonstration equipment. I have a large model of the ear, some laminated diagrams, an otoscope, some old hearing aids on stetoclips, dummy hearing aid and cochlear implants, disposable ear plugs, and my iPad with some ‘drag and drop’ build-an-ear apps. We all sat round in a circle on the floor and basically tipped out all this stuff! They could handle anything they wanted and ask any questions they had. They all loved having a look in one anothers ears and were fascinated by the internal parts of a cochlear implant. The hearing siblings tried out earplugs and listened to hearing aids and they thought this was helpful in understanding their brother or sister’s deafness. A little competition broke out trying to build parts of the ear the quickest on the iPad. We talked wax, how sound moves through the ear, and using the ‘T’ programme to connect to Bluetooth streamers and iPods. Second big surprise was that not one of the teenagers had the ‘T’ programme activated in their hearing aids. In fact one lad told me he’d asked his audiologist for it at his last apointment and had been told it ‘wasn’t necessary because you only have a moderate hearing loss’. Given that the main benefits of using the ‘T’ setting are little to do with the level of hearing and much more to do with overcoming limitations in hearing aid technology (such as hearing sounds clearly that come from a distance, reducing distracting background noise, and enabling use of audio equipment without the need for headphones) this seemed like missing an important opportunity and we’ve encouraged him to ask again!

IMG_0829My session was just one part of the weekend so it was lovely to hear their views at the end when they completed an evaluation activity and shared what they’d done and learned throughout the weekend with their parents (and vice-versa!)

They loved these ear anatomy post it notes (available from Blue Tree Publishing) that they used to write down some of the things they’d learned in my session! And we’re going to be developing some resources for kids who lose their hearing and their families to help address some of the issues they raised – watch this space…

One in 10 children who survive meningitis are deafened as a result of the illness. Great strides have been made in vaccination for some types of meningitis including the vaccination for Hib (Haemophilus influenzae type b) which was the biggest cause of meningitis in children under the age of 5 years and a major cause of deafness. The Hib vaccine was introduced in 1992 into the childhood vaccination schedule. However, even after this, hearing problems remain one of the most common after effects of bacterial meningitis.  Other forms of meningitis which are not vaccine preventable, and which pose a significant risk of hearing loss, are group B streptococcal and E coli meningitis, which together account for most cases of meningitis in newborn babies (neonatal meningitis). This means that health professionals working in paediatrics must remain vigilant and refer all babies and children who have had meningitis to audiology for hearing tests, and audiologists must continue to educate their local teams about the risks.

In November 2009 I spoke at the ‘After Meningitis Conference’ in London hosted by the Meningitis Trust on the ‘Impact and Challenges of Hearing Loss Following Meningitis’. I have uploaded the slides below for those that are interested in the facts and figures, and listed the references below.

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Resources, references & further information

A while back I blogged about a new NDCS weekend families with a child who has mild, moderate or unilateral deafness that I was involved in delivering. We are continuing to develop our famly weekend programme and are really delighted to announce a further two new ones…

You & your deaf child: a weekend for deaf parents & their families which will be held 30th November – 2nd December in Reading (for deaf children aged 2.5 – 11 years)

and Weekend for young people with acquired, progressive or late-onset deafness & their families (aged 11 – 16 years and who have developed their hearing loss in the last 18 months) from 18 – 20th January in Reading.

All events are free of charge! You can find out more about these events, other weekend events for families, and details on booking here.  And if you know of any families that these would be suitable for please pass on the information to them. Thank you!


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