KidsAudiologist

Archive for the ‘NHS’ Category

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.

 

 

 

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“Over 60% of Britons say they are not confident communicating with a child who is deaf”
(Disability Matters Launch Report, Feb 2015)

https://www.disabilitymatters.org.uk
Over the last few months I’ve been working with the project team at the Royal College of Paediatrics and Child Health, an NDCS colleague Lucy Read, and some deaf young people and adults on a new e-learning module called ‘Deaf Communication Matters’. This forms part of a large suite of online and group learning modules that aim to tackle the inequalities that disabled children and young people face in their daily lives. Lauched last week the modules have each been 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.

The Deaf Communication Matters module uses video of several of NDCS former YAB members and material from their 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.

So far 27 modules are live with more to come. 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.

PiF Guide

Back in February I reported on the launch of the NDCS My Life My Health campaign. As a result of a contact made at the event we were asked to contibute to the updated ‪Guide to Producing Health Information for Children & Young People by the Patient Information Forum. This guide is now out and I think it is a fantastic resource for audiology and other health professionals thinking of developing new information resources for deaf and hearing children and young people. ‬Chapter 4 is of special interest as it looks at the needs of different audiences and age groups, and the pros and cons of different formats. It also discusses accessibility for audiences with a disability or special communication needs, or with a first language other than English.

In chapter 5 you’ll find lists useful resources, organisations and contacts to help you research and understand the information needs and learning styles of children and young people, and produce engaging information that meets their needs. In case you haven’t already seen the NDCS Buzz website for children 8-11 and young people 12-18 upwards then take a look. It’s listed as an “inspiring example” alongside CLIC Sargent, GOSH,  Macmillan, Teenage Cancer Trust and Young Minds!

The full version is available for £20 from the Patient Information Forum but you can download an ‘at a glance’ summary for free.

Further information

How you can make your resources accessible to deaf children and young people (NDCS 2013) available free of charge.

My Life, My Health Logo

Today saw the launch of  My life, My health – a call on GPs and surgeries to be more deaf aware and ensure deaf teenagers get the health support they need. The My life, My health campaign has been developed by the National Deaf Children’s Society and its Young People’s Advisory Board, is supported by the Royal College of Paediatricians and Child Health, and is the first health campaign of its kind led by deaf young people. More than 200 deaf children and young people from across the UK were consulted to find out about their experiences of using health services, including visiting their GP.

The findings, published in a new report, suggest there is currently a worrying lack of deaf awareness in GP surgeries. Many health care professionals do not know how to communicate with a deaf child or young person. Surgeries do not always provide deaf friendly services, such as the option to book appointments by text message, or ensure sign language interpreters are available.

Findings also suggest deaf teenagers struggle to know when their name has been called, or understand what is happening during their appointment. Other deaf teenagers lack confidence in managing their own health care appointments.

Lucy Read, Head of Children and Young People’s Participation at the National Deaf Children’s Society, said: “Young people have the right to high quality, accessible health care services. However, this is not always their experience and certainly not for those from vulnerable groups, such as deaf teenagers. There are 45,000 deaf children and young people in the UK and it is unacceptable that their health should be compromised simply because they are deaf. It is vital they receive the right health support from an early age, as this also ensures they can go on to become independent adults.”

Dr Hilary Cass, President, Royal College of Paediatrics and Child Health said: As child health professionals, we have to get better at communicating with deaf teenagers. Simple steps such as making information more accessible can make a real difference to the lives of these young people.

“It’s shocking that too many deaf young people are at risk of poorer health outcomes as adults simply because they are deaf. There is no reason why, with the right support, deaf teenagers can’t be as healthy, informed and independent as other young people. This report and its recommendations provide a timely reminder that there is still a way to go to ensure that deaf children and young people have more voice, choice and control over their healthcare.”

The My life, My health campaign highlights three key areas that need to be addressed: better deaf awareness; improved access to information and ensuring the right communication support is in place; supporting deaf teenagers to become more independent in managing their own health care.

The National Deaf Children’s Society and its Young People’s Advisory Board have created a range of resources for GPs, deaf teenagers and their parents, including top tips for GPs, and a wallet sized card that deaf teenagers can show their GP with details of their communication needs. More information, including a campaign video and resources, can be found here.

Follow the day’s events on Twitter at #mylifemyhealth

(Source NDCS Press Release 4th February 2014)

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

Yesterday I published news that specialist paediatric audiology services are to be nationally commissioned from next April. Discussion with colleagues and on Twitter has confirmed confusion about the plans. And in response to the link posted on the BAA Facebook page I received some varied responses:

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In summary:

The biggest question appears to be how much of a typical paediatric audiology service will fall under “Specialist Audiology Services. Specialised audiology services consist of those audiological services which are part of a paediatric hearing aid service”? We don’t know at this stage – it could mean just the advanced audiological tests such as diagnostic ABRs (used mostly for diagnosis following newborn screening) or it could also include hearing aid fittings since we know that fitting aids to babies is very complex. My working assumption is that they are using the same kind of definition that the Department of Health used in their Transforming services for children with hearing difficulties and their families; A good practice guide (2008) that used the term to mean fitting of hearing aids on the under 3’s and associated testing.

Whichever parts of the service are included the issues remain the same, with the most important of all – how to ensure good integrated care across the child’s care pathway when several different services and commissioning bodies are involved? Lots to tease out and lots of clarity still needed about what this announcement will mean.

UPDATE 18th September 2012: The NDCS response to this news can now be read here

NDCS are calling on the Department for Education to intervene to protect specialist services for deaf children as a matter of urgency. We know that local authorities are cutting these services to save money, without being transparent about their decisions and actions. These services are not a luxury. They are vital to deaf children’s education, health and wellbeing.

We need 100,000 signatures. Please sign today and share with your friends and family. Thank you.

CLICK TO SIGN HERE!

Protecting specialist services for deaf children


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