KidsAudiologist

Archive for the ‘audiologist’ Category

The spread and impact of the coronavirus on all of our lives has been unprecedented and will continue to affect all of us for some time. When we watch the daily news it is easy to see the upheaval and impact that doctors, nurses and NHS services are going through whilst we are all being asked to #ProtectTheNHS and #SaveLives by staying home. Perhaps it can be harder to imagine the impact on some of the professionals who make up the teams who support deaf children. Here I will share a little of what is happening for audiologists right now and the impact on audiology services.

It’s not been widely reported but the first frontline health worker in the Republic of Ireland to die of coronavirus was an audiologist last Friday. The first in the UK an ENT doctor on Saturday. For their professional communities this has been a horrible shock.

Most audiology and cochlear implant teams have been reduced to skeleton staff and all routine hospital appointments have been cancelled. However, all services are doing their best to maintain hearing aid / cochlear implant repair and battery provision. I have written information for parents about what they can expect from their services available on the NDCS website and updated regularly – the situation is rapidly changing but we advise that any family that needs help, contact their usual service and find out what arrangements are. Audiologists are taking decisions on case by case basis, and within the context of their local facilities and local COVID-19 risk.

So what has happened to all the other audiologists?

Well, some are in self-isolation themselves, or shielding family members at home. Currently the NHS has lost about a quarter of its usual workforce for these reasons alone. Some audiologists are working from home and providing telephone/video support to patients, managing referrals into the service by triaging and prioritisation of new patients for when their service re-opens.

Many others however have been re-deployed into other roles. I attended a virtual meeting with around 118 Heads of Services this week and found out that audiologists are now (or soon will be) re-trained and working:

• in relative support and bereavement services
• as PPE mask fitters
• in laboratories
• monitoring and calibrating equipment on wards (e.g. ventilators)
• as newborn hearing screeners
• in the pharmacy warehouse picking and packing medicines
• in A&E as reception/triage/runners
• and some have gone to man the NHS 111 service.

And some of these are joining other healthcare colleagues and doing this from the new NHS Nightingale Hospital in London.

We have to acknowledge that there will be a significant number of children where there are currently concerns about their hearing but who are unable to get a diagnosis at present. These children and their families will be finding out at a much later stage than we would want and this is far from the ideal situation. NDCS will have much work to do with services and funders to make sure that these young children are given the very best support as soon as intervention is available again. But right now, NHS newborn hearing screening and audiology services are doing everything they can for babies and their existing caseloads of deaf children. In many cases they are managing much more than I ever thought would be possible given the current constraints. Our NDCS teams who are working with frontline professionals are taking a massive thank you from us and I would urge you to think about them too when we’re clapping for the NHS.

Take care and stay safe x

This blog has been written for families with deaf children. It covers things that parents need to be aware of in the coming days and weeks during school closures, accessing hearing aid repairs and batteries, and supporting deaf children during the spread of coronavirus.

The blog is updated regularly as soon as any new information becomes available. Please share far and wide and make sure families get this information. Thank you!

 

Can you help us by sharing your views?

The NHS in England has made a commitment to introduce new services for hearing care, eye care, and dental health for children and young people who attend residential special schools.

And the NHS has asked NDCS to develop information leaflets about hearing care for parents and carers that accompany this project.

Why is this new NHS project important?

  • Children with autism, a learning disability or both have a right to be able to access high quality care for their ears and hearing no matter where they go to school.
  • We know that children with autism, a learning disability or both are more likely to have difficulties with their hearing than their non-disabled peers.
  • Hearing is not only important in speech development and learning, hearing also connects us to our environment. For example, being able to hear and understand our environment, such as hearing footsteps coming or hearing music.
  • But we know that hearing difficulties are often unrecognised or undiagnosed because behaviours associated with hearing difficulty may be thought of as being part of the child’s personality, physical or learning difficulties, or complex needs.
  • And children often don’t have access to an audiology (hearing) clinic because there isn’t a suitable service that is nearby to attend, because hearing difficulties are not considered a priority for the child because of other more pressing health needs, or because those people working with or caring for the child believe that it is not possible for their child to have their hearing assessed.

By sharing your views you can help us develop accessible information for all parents and carers to help them understand why this work is happening, why it matters and how they can help their children to access these services.

We would like to hear more about your personal experiences of hearing tests and what you feel you would have found useful to have known beforehand. Or if your child has never had a hearing test, why this is the case and if you have any views are on what information you would need to help you access the hearing clinic. Please let us know by completing this 10 minute questionnaire

If you would prefer, I would be happy to organise a time to talk to you in person, by phone or by Skype. Please contact me at NDCS:

Vicki Kirwin
Senior Policy Adviser
Direct dial: 023 8065 2735
Email: vicki . kirwin @ ndcs . org . uk

All your feedback will be used confidentially unless you specifically give us permission otherwise. And once the project is finished we will ensure that you receive a copy and are told how your views and feedback was used.

Thank you!

 

The Hear Glue Ear app, created by a Cambridge Paediatrician Dr Tamsin Brown, won ‘Children’s App of the Year’ at the UK App Awards last month.Children with glue ear often have long periods of time with mild-moderate deafness during the critical stages for speech and language development (for example, during the ‘watch and wait’ period in the care pathway, whilst waiting for hearing aid fitting or grommet surgery, when hearing aids or grommets are not available, suitable or acceptable to the family for some reason). Pressures on NHS and education services mean that there is very limited support during these periods. The app was developed by Cambridge Digital Health and funded by the Cambridge Hearing Trust for families to use during these times. It includes:

  • Information and advice for families on glue ear, it’s effects, and what you can do to help overcome the temporary hearing loss during the watch and wait period
  • The ability to upload the child’s speech and language plan to work from
  • Links and suggestions of other resources to directly help the children
  • Free audiobooks and games that encourage reading together and working on certain developmental skills
  • A hearing game (level monitor) that gives parents an idea of how their child’s hearing is today if it tends to fluctuate
  • The ability to open access to your child’s records/notes within the app to a professional by entering their email address

The app can be downloaded free here and you can read more about the app and research here

Congratulations to Dr Brown and her team on winning this award for a really innovative approach to helping children with glue ear. Before the awards ceremony her daughter Lilac, 9 years old, explained how her mum came up with headphones and the app to help her hear when she had glue ear:

“I am going to the app awards in London and I am so excited. My mum made an app to help children with ear problems like mine.

When I was little I got ear ache every month. Then mum noticed that I  couldn’t hear some of the words because I was missing letters. Mum took me to have a hearing test.

I couldn’t hear very well, at that time I was in playgroup.

Mum said I had glue ear. I  couldn’t hear for a year before I had a grommet operation.

The grommet operation did help and was fine but I got more ear aches afterwards.

When the grommets came out, I got a hole in my ear drum for another year. That didn’t help my hearing either.

Mum thought I needed a operation because there was a hole in my ear but soon it got better all by itself.

Everyone was surprised because it’s not often an ear drum gets itself better like that when there is so much happening with your ear.

Mum noticed that when I got a cold or an ear-ache I asked “what” some of the time and got words wrong. For example I loved collecting conkers but I called them “onkers”, I didn’t really notice people were saying the ‘c’ at the beginning.

I started school and I wasn’t that good at reading because If I asked the grown-ups what the word was maybe I wouldn’t hear it right. It also makes spelling difficult.

It’s really difficult when children can’t hear because we don’t want to argue with the teachers or other adults. Because if we accidentally hear a word wrong and then say it then the teacher might think we have said the wrong thing and tell you off. I remember once I thought the teacher said to get my  lunch box, and I walked out of class, she hadn’t said that, so I got into trouble. It was because I was looking away for a second when she was talking. I am more deaf when I am not concentrating on the teacher.

It’s hardest to hear when I’m in a crowded place in public. And that is when I would most like to have a headset.

Mum didn’t want children to have a hard time at school and at home like I did. So mum found some headphones that you can Bluetooth to a microphone so that you can hear the teacher better at school [the cost is £100-150 and can be trialled from NDCS] . Or you Bluetooth the headphones to Mum’s app. If you use the app you get stories, songs and games which makes it fun and it helps your listening  and it helps you to not fall behind with your learning.

Mum says children don’t want to fall behind when they have glue ear. I think Mum’s right and I think I also want people to have better hearing.

The app that Mum created is called Hear Glue Ear. When I saw it, mum said I could look at it and change anything. I helped mum to make it better and better and better, and so did all my family and other families and children who had glue ear.

It’s a lot of work and usually I have to wait while mum is doing a meeting and I have to be super super quiet. 

Now my glue ear has gone,  I still have a little bit of hearing loss in one ear,  but it’s only a problem now and then.

One day mum got asked to go to a conference in Australia. She didn’t want to leave us at home, so we went and had a lovely holiday. I did feel bad for her working, but I knew if she went to this conference it would not only give us a nice holiday but it might save children’s hearing. When she was there someone else asked her to go to Sweden for a different conference, so then we went to Sweden on holiday the following year. It’s because she is such an amazing doctor.

On a plane journeys it helps me when I can suck sweets otherwise my ears are really bad and it lasts for 2 days.

The app got asked to come to London so that it can win children’s best app [Hear Glue Ear app has been shortlisted for Children’s app of the year at the UK app awards ceremony in London on November 26th]. I get to go to London with Mummy and hopefully I can get to see her win the children’s best app award.

To other children who have glue ear remember it’s the glue ear that’s difficult and not you. And could you cross your fingers my mummy wins the best app award.

Love Lilac”

Last week NHS England and NHS Improvement published new Guidance for Children’s Hearing Services Working Groups (CHSWGs). This new guidance was written by myself, along with two colleagues from NDCS, and with the involvement of families from across England.

CHSWGs have been around in one form or another for the last 20 years. They are multi-disciplinary and multi-agency groups with professionals, funders of services, and parents of deaf children who all work together to ensure local services across health, education, social care and the voluntary sector meet the needs of local families and are of the best quality. We have been involved in CHSWGs from the early days with many groups having a member of the National Deaf Children’s Society staff on them. We also run courses for parents and support them to be able to actively contribute in local groups. When CHSWGs work well they can really help professionals to work more collaboratively, improve the experiences of families using services, and meet duties to improve outcomes for deaf children. But the quality of CHSWGs nationally is highly variable and in some places the groups have ceased to exist.

This new guidance aims to meet many of the needs that local CHSWGs have been asking for our support with. It shows how CHSWGs fit in with current quality standards and the national policy environment. It will help existing CHSWGs strengthen what they do and where areas don’t have a CHSWG it explains why they should. The guidance has been written so that it is accessible to all members of local CHSWGs and we’ve included:

  • Case-studies that demonstrate good practice in action
  • Guidance on involving young people and parents in CHSWGs
  • Example documents that services might like to use – terms of reference, letters and flyers to parents, a glossary, and a template annual report.

In future we should be able to request copies of the CHSWG annual report and get comprehensive data on the services represented along with outcomes for deaf children in their area. Together, this will help families with deaf children better hold services to account.

This is what some parents have said about their participation in their local CHSWG:

“In my experience, virtually every one of the service professionals and voluntary sector officers I have encountered in my 8 years on the CHSWG has been dedicated, qualified and keen to do the best job they could. Everyone really is on the same page, and the CHSWG helps them work together as a team more effectively. I have felt privileged to know these professionals, and to see the excellent work they are always trying to do. They have been unfailingly patient and supportive, explaining their acronyms and shorthand and always respecting my views as a parent.”
Ellen Purton, Parent Representative, Richmond CHSWG

“I feedback about local services via the CHSWG and feel that changes have happened as a direct result of my work with the group.”
Parent of a deaf child

 

You can find the new guidance here.

The CHSWG guidance forms one of a series of guides produced to help deliver the recommendations in the Government’s Action Plan on Hearing Loss (2015).

Services can download an audit tool to help them monitor how well they are doing implementing the new guidance here.

You can find information on our work supporting new and existing parent members of CHSWGs here.

 

National Deaf Children's Society Campaigns blog

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…

View original post 370 more words

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

Screen Shot 2016-07-20 at 07.28.16

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.

 

 

Updated February 2019

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

 

Updated February 2019

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

First stop – The Buzz – NDCS website especially for deaf children and young people. Click on ‘info and advice’ 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‘s – filter by audience ‘deaf children’ for ‘Going 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 rights – an 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)

Updated February 2019

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)

Triangle – training pack ‘Three Way Street’. Communicating with children is often a three way event, involving a parent or carer or other accompanying adult. This pack provides a model for three way communication in which the child is central, and demonstrates practical, evidence-based strategies to establish direct communication with a child in the presence of another adult. Three Way Street is relevant for a multi-professional audience and can be used at different levels with social workers, doctors, nurses, teachers, early years workers and others working with children. Triangle is an independent organisation working directly with children and families, giving expert opinion to the courts and teaching and advising parents and professionals.

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.


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