KidsAudiologist

“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)

From this month NHS England (briefly known as the NHS Commissioning Board) takes over responsibility for commissioning specialist services for deaf children. This includes specialist implantable devices such as cochlear implants, bone anchored hearing aids and middle ear implants etc. Bilateral cochlear implants are currently and continue to be funded in line with NICE recommedations which children have a right to access under the NHS Constitution.

This month NHS England have announced their clinical access policies for bone anchored hearing aids and active middle ear implants. These are important because they relate to services that don’t have NICE recommendations and were previously commissioned locally by Primary Care Trusts and were subject to wide variation in provision. In summary:

Bone anchored hearing aids

  • are of safe and of proven benefit
  • should be provided in a specialist centre doing at least 15 a year. The team should include an ENT surgeon, audiologist, paediatric anaesthetist and speech and language therapist.
  • for children with microtia their care must be coordinated by a multidisciplinary team that can provide appropriate hearing and reconstructive support.
  • early intervention is vital and children born deaf should be provided with a bone anchored hearing aid on a soft headband until they are old enough for surgery.
  • funding will be available for children with bilateral conductive hearing loss to have bilateral bone anchored hearing aids if multidisciplinary assessment suggests that this would provide children with the best hearing environment in the classroom situation.
  • although bone anchored hearing aids would not normally be funded for children with unilateral deafness, an ‘exceptional case’ request can be made centred on information regarding the child’s development, audiometry results and communication needs.
  • and for the first time service providers will be expected to collect and provide audit data on request.

“Documents which have informed this policy – The National Deaf Children’s Society. Quality Standards in Bone Anchored Hearing Aids for Children and Young People. 2010″

Middle Ear Implants

Middle ear implants are a relatively new technology and very few children world-wide have been fitted with them. The evidence base is therefore almost non-existent at the current time. For these reasons it was not unexpected that active middle ear implants will not be routinely commissioned and will only be used as part of a recognised and structured clinical research project. However, they will be commissioned in the following limited circumstances:

  • Bilateral sensorineural hearing loss when conventional hearing aids have been used and found to be medically unsuitable due to conditions of the external ear.
  • Mixed hearing loss when conventional hearing aids have been used and found to be medically unsuitable due to conditions of the external ear and when a bone anchored hearing aid has been implanted and been associated with medical problems of the soft tissues or loss of fixture on more than one occasion.

Can you help?

EarCampNepal1Ear Aid Nepal are urgently looking for one or two volunteer audiologists for a charitable ear camp in Nepal this April:

“The International Nepal Fellowship has run these ear camps in remote areas of Nepal twice a year since 1993. We have an excellent local Nepali team and we also take 4 otologists, anaesthetists, theatre nurses and usually 3 audiologists from abroad. We travel to Kathmandu then fly on into western Nepal, finishing the journey to a small district hospital by Land rover. I am an ENT consultant / otologist in Hereford and Worcester and I am the main organiser of volunteers and the regular surgeon on these ear camps . We have had many volunteer audiologists from Britain and other countries. Our next camp is for two weeks in April 2013, we usually take 3 audiologists with us but two had to cancel recently.

Our next camp is in April 2013, leaving the UK on the evening of Friday 5th and returning by Sunday 21st, though some volunteers stay longer to go sight seeing and trekking (we can arrange that if you would like).
We generally book volunteers a year or more in advance but we have two spaces that have fallen vacant for this April, so we are in URGENT need of at least one replacement. Volunteers are self funding (many volunteers have raised their own fares with local events), the experience is amazing and valuable. We can easily put you in touch with previous volunteers and there is a lot of information on our website.

EarCampNepal2PLEASE consider this, it will be a very special and worthwhile chance.
Between us we saw over 1200 patients on our most recent camp in November 2012. Of these 150 had surgery and a record 200 were fitted with hearing aids.
we have staff and people with local language skills to help.”

If you want any more information then please contact:
Mike Smith mike.smith@earaidnepal.org

http://www.earaidnepal.org

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…

This week NDCS launched their first information publication for audiology and ENT clinics to offer the under 10’s. I developed the concept and story, and Tim Bradford did the illustrations.

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What it is?

A comic for young children who have been diagnosed with glue ear and whose parents have been offered and opted to have grommet surgery. The comic leads a child through the steps they have encountered and what will happen next – coming into hospital, the surgery, and how afterwards they can expect to hear a lot better. The comic can be read alone or with their parents, and there is a space to draw pictures when readers imagine what Harvey might be dreaming about. Download a copy here but it would be even better to have paper copies available to hand out to kids in clinic. Order some free online or from the Helpline.

What it isn’t?

Harvey gets grommets isn’t a decision aid for families. There are several potential options for children including ‘watchful waiting’ or trial of hearing aids. For some surgery isn’t acceptable or appropriate. The vast majority find grommets resolve the issue of glue ear for them. But there are a smaller group where grommets don’t work for them, occassionally they have to be removed due to infection, and those who unfortunately end up with long-term hearing loss (a potential complication of surgery but also of leaving the glue ear alone and not treating, putting parents in a no-win situation).

NDCS also has information for parents that discuss the different options available as well as links to other resources that are useful.

I’m hoping now to build on this resource and develop some further comics for children. What do you think? I’m thinking a trip to the audiology clinic, or perhaps one on getting hearing aids for the first time? Any other suggestions?

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