KidsAudiologist

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.

 

 

We know that children children and teenagers are the experts in their own lives and have the right to be meaningfully involved in all decisions that affect them. The ‘right to participate’ is one of the guiding principles enshrined within the United Nations Convention on the Rights of the Child (1989) and government policy has long emphasised the importance of listening to, as well as the involving children, young people and their parents in shaping the services they receive, for example Aiming High for Disabled Children (HM Treasury & DfES, 2007), You’re Welcome (DH, 2007), and the Children and Families Act (2014).

In practice many of us find this very challenging in our day-to-day practice. Participation is not fully embedded in the culture of the NHS and in particular in services for disabled children, those with delayed communication skills or communication impairments, and deaf children and young people who primarily use other languages to ourselves, such as BSL users.

‘Participation’ could mean everything from participating more effectively in their appointments, taking greater responsibility for asking for and responding to information, being able to advocate for and engage with their own care, to working with them to develop services that more closely meet their needs.

I have put together a list of useful resources to support audiologists and other health professionals in improving participation of deaf children and young people in audiology and other health settings:

Information for children and young people for resources developed for deaf children and young people, producing your own information for deaf children and young people, and information for children and young people on their rights when using NHS services

Communicating and decision making with deaf children and young people for resources on improving communication

Young peoples views of the services they receive and involvement of children and young people for resources on their views

 

Resources to support Improving participation of children and young people in audiology:

First stop – The Buzz – NDCS website especially for children with sections for children aged 8-11 years and young people aged 12-18 years. Click on ‘info & advice’ section in the 12-18 years section, for information written for teenagers including the ear, hearing & deafness, hearing aids & cochlear implants, audiology & transition, as well as lots more general information about life! Plus some videos made by teenagers discussing cochlear implants, changing the tubing in their hearing aids, and using radio aids for listening to music.

Also available – comics for the under 10‘sGoing to the Hearing Clinic’, ‘Harvey gets grommets’ and ‘Ali gets hearing aids’.

If you’re interested in producing information for children yourself then read Guide to Producing Health Information for Children and Young People (PIF, 2014)

For advice on making your information resources accessible to deaf children and young people download this NDCS guide How you can make your resources accessible to deaf children and young people (2013)

The NHS Youth Forum has a series of posters/leaflets on young peoples rights when using NHS services (2015)

Get your rightsan interactive website designed in partnership with children and young people to explain their rights when using the NHS. It includes videos from young people telling their stories about how the rights have made a difference to them, and messages from professionals explaining why they value young people’s rights. The website is based on research that found that children and young people did not know about the NHS Constitution and did not understand that they had rights and that this was having a negative impact on their experience of using the NHS (Council for Disabled Children and National Children’s Bureau, 2015)

Your Rights, Your Future – is a resource developed in partnership with disabled young people. It provides training and interactive activities to help young people understand the Children’s and Families Act 2014 and what is means to them (Council for Disabled Children, 2015)

Resources to support Improving participation of children and young people in audiology:

Deaf Communication Matters (Disability Matters, 2015) This free e-learning module uses video of deaf children and young people 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.

How to involve children and young people with communication impairments in decision-making (National Children’s Bureau, 2008)

The My World tool from the Ida Institute can help facilitate an understanding of hearing loss from the child’s point of view. “The tool consists of three different environments: a classroom, a home, and an outdoors area. The child can place movable figures and everyday objects in the various environments to describe communication successes and challenges in every day life. By playing with the tool components, the child can externalize the hearing loss and discuss how they communicate with others in a concrete and non-threatening way. The tool can help you uncover information about the child’s communication patterns, reinforce positive patterns and formulate a strategy for coping with every day challenges.”

Counseling Strategies for Tweens/Teens with Hearing Loss is a pre-recorded eLearning course which is free to view from AudiologyOnline. “Tweens and teens with hearing loss face many challenges and often have no one to talk to about them. This presentation will describe a range of strategies designed to give teens an opportunity to talk to us as we redefine our role to listener and supporter.”

Fostering Self-advocacy in Elementary-Aged Students with Hearing Loss is a pre-recorded eLearning course which is free to view from AudiologyOnline. “Fostering self-advocacy in elementary-aged students with hearing loss is a complex, multi-parameter endeavor. This course will introduce adaptation of the instructional concepts of coaching and gradual release of responsibility involving the constituents (the student, the family, and the school personnel) and the 3-prong continuum involving the “operator” (the student), the “equipment” (ALDs), and the “listening environment”. Specific examples will be provided to optimize the course participants understanding of these concepts.” A transcript the presentation is also available to read here.

Tips for Teens – Use Your IEP Meetings to Learn How to Advocate for Yourself is a factsheet for older children and teenagers explaining how self-advocacy is a key step in becoming an adult – looking out for yourself, telling people what you need, and knowing how to take responsibility – with advice on how to do this.

Treating adolescents- Why won’t they follow my advice?, (Hearing Journal, Oct 2011) contains strategies for avoiding fruitless power struggles with adolescents and increasing the likelihood that they will follow your recommendations.

“Mind the Gap” (Phonak Junior News (Canada) Issue 7, July 2011) “Quite often, audiologists and teens stand on two sides of the “hearing aid/FM use” gap. Audiologists are keen to see teens and pre-teens with hearing loss use their hearing aids full-time. Our patients, however, often decide not to adhere to this recommendation. The opposing positions create tension, leaving audiologists feeling frustrated and patients feeling angry and unsupported.

How to mind this particular gap? Teens are not known for their gregarious nature with adults, so we need to consider how we share the “talk time.” Estimate the amount of minutes given to the patient to carry the conversational ball; it’s quite possible we do virtually all of the talking.

Instead of attempting to establish a rapport with this age group, we might strive to develop “common ground.” Although these concepts may sound interchangeable, in clinical settings developing common ground means a concerted effort to exchange perspectives specifically to help each person understand the other’s views. Until we know what a teen’s views are regarding his or her life with hearing loss, we can’t expect to be trusted, and we will not be made privy to specific dilemmas.”

Elkayam, J., & English, K. (2003). Counseling adolescents with hearing loss with the use of self-assessment/significant others questionnaires. Journal of the American Academy of Audiology, 11(9), 485-499.

English, K. M. (1997). Self-Advocacy for Students Who are Deaf or Hard of Hearing. Austin, TX: Pro-ed.

English, K. M. (2002). Counselling Children with Hearing Impairment and Their Families. Boston: Allyn and Bacon.

Resources to support Improving participation of children and young people in audiology:

Guidelines for research with children and young people (National Children’s Bureau, 2011)

Listening to children’s views on health provision – a rapid review of the evidence (National Children’s Bureau, 2012)

The Participation Toolkit (Scottish Health Council, 2010)

Adolescent health in the UK today (ChiMat, 2014)

A literature review on the participation of disabled children and young people in decision making (VIPER project, 2014)

Getting services right for adolescents (Health Service Journal, March 2010)

Not Just a Phase; A Guide to the Participation of Children and Young People in Health Services (Royal College of Paediatrics and Child Health, 2010)

‘You’re Welcome’: quality criteria for young people friendly health services (Department of Health, 2011)

Understanding what matters A guide to using patient feedback to transform services (Department of Health, 2009)

Quality of Life of Deaf and Hard-of-Hearing Children and Youth (Project HQL) (University of Washington & partners, 2010)

Over to you report (NDCS, 2011) Over to you was a one-year project which looked at the experiences of deaf young people of their audiology service. This project was completed jointly by NDCS, in partnership with the audiology services based in the London boroughs of Newham, Tower Hamlets and City & Hackney. From April 2010 to January 2011 we met with 100 deaf young people aged 12 to 18. ”

Audiology; What young people think (NDCS, 2011) A leaflet written for young people about the results of the Over to you project

Going to the audiologist; Deaf young people have their say (NDCS, 2014) Between April and August 2014, NDCS asked deaf children and young people aged 12–18 to tell us about their experiences of going to the audiologist

Over the years this is a question I have heard a lot at NDCS. Recently I notice that additionally more families are being asked to pay for copies of test results and letters when they request them (for example when they apply for Disability Living Allowance). A symptom of the increasing financial pressures that the NHS is under I suspect.

The answer is that The NHS Plan (2000) made a commitment to patients/carers to receive copies of all letters written about them (p89). This was followed up by Copying letters to patients: good practice guidelines (2003).

So parents have a right to be offered copies of letters between clinicians that are written about their children. This guidance says that raw data (test results) should be explained in person and not copied to patient and technically an audiogram is ‘raw data’. They therefore don’t have a right to copies of the audiogram/other test results. However, provided parents have been given a proper explanation of what they mean then most welcome having copies themselves and most audiologists are more than happy to print off an extra copy at the time of the appointment. My feeling is that parents really should be given copies of audiograms with full explanations.

If parents haven’t been given an audiogram or letter that they need for another purpose (for example their DLA application) then the NHS is legally entitled to make a ‘reasonable’ charge for providing copies of anything in the patients files that isn’t already a ‘right’ for them to have. The charge should cover admin time, photocopy and postage charges.

Hearing aid wearers are most familiar with their ‘T’ switch to help them hear better in public places fitted with loop systems, such as churches, theatres, banks and post offices. These aren’t situations we generally consider as being very relevant to children and young people but a new generation of assistive devices have the potential to make hearing aids ‘cool’, improve their listening experience, and increase opportunities for language and social development.

Induction loop technology
Induction loop technology is the oldest of the wireless technologies and works with a telecoil, which has been a standard feature in NHS hearing aids for many years. Room loops help overcome some limitations of hearing aids and reduce the negative effects of distance and background noise, improving the signal-to-noise ratio and reducing listening effort for the wearer.

During the analogue era of hearing aids the telecoil was always available and a visual MTO switch meant that wearers were prompted to ask questions about it or go out and research it even if the audiologist didn’t directly tell them about it’s use. New and innovative products which use magnetic induction technology are making mainstream products more accessible to deaf children enabling them to share experiences with their hearing friends. These include inductive earhooks, neckloops and Bluetooth streamers with neckloops. These products allow a child wearing a hearing aid to listen to mobile phones or an entertainment device, such as an iPod, MP3 player, laptop or portable games console.

Modern digital hearing aids now have multiple programme capability but the telecoil setting must be activated. The wearer must be able to reliably change programmes as there is no visual indicator the ‘T’ setting is being used. Our experience at NDCS is that the majority of children and young people attending our events or visiting the Listening Bus do not know what the telecoil is and do not have it activated and so are unable to try out equipment that could be of benefit.

Deaf children and young people asking for more information
In 2007 NDCS carried out a consultation with nearly 1500 children and young people aged nine to 18. The results found significant numbers of children and young people in both the younger and older age groups wanted more information on deafness and the technologies that can support them.

Download the full article – Telecoils – making hearing aids cool for kids? – that was published in March 2013 in the UK edition of Audio Infos magazine to answer some common questions we get asked:

  • Using loop technology with children
  • Not deaf enough for a ‘T’ setting?
  • Too young for a ‘T’ setting?
  • Too hard explaining the technical information to a child?
  • Worried about noise interference?
  • T or M/T?
  • They already have an personal FM system. Isn’t that better?
  • I don’t feel confident recommending assistive listening products?

One more tool in their toolbox!
Loop technology has moved out of dusty meeting halls and has become very relevant to deaf children and young people. At the same time deaf children and young people are reporting that they need more information about both deaf and mainstream technologies and how they can access these. New technologies are making mainstream products more accessible to deaf children enabling them to enjoy the same communication, music, and entertainment devices as their hearing peers. Telecoils are one more tool for children, with the potential to enhance their language, educational and social development.

Further information

For information on the wide range of products and equipment that might be helpful for deaf children at home, at school or when socialising with friends, as well as information on the using the free Technology Test Drive to trial new equipment head to NDCS here.

Telecoils – making hearing aids cool for kids? (Audio Infos, Mar 2013)

Can Kids Benefit From Hearing Loops? (Jane Madell, Jan 2015)

 

 

 

 

 

 

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