KidsAudiologist

Archive for the ‘deaf’ Category

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

I have been asked to speak a few times on transition of young deaf people to adult hearing services – on the challenges they report and what good practice in transition looks like. I start by saying that I believe good transition is reliant on good participation of children and young people – listening to their views, meaningfully involving them in decisions that affect their care and in helping shape the services they receive. But I’ve also put together this post to answer some of the questions I get asked and signpost to other useful resources.

Definition of transition:

“Transition can be defined as a purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centred to adult-oriented health care systems.” (Transition: getting it right for young people, DfES & DH, 2006)

Government policy emphasises that this is not solely a matter for healthcare professionals, since long-term conditions also have important educational, social and financial implications. Transition planning in the Health Service must secure optimal health care for the young person but it is equally important to ensure that their wider needs and their aspirations for their future are at the centre of the planning process.

Challenges described by deaf young people and their families during transition:

  • Up to 40% of deaf young people will have one or more additional health needs. These conditions may interact and impact on other aspects of their lives.
  • Young people with complex disability may have particular problems when there is no equivalent adult service able or willing to take on their long term health care and medical supervision.
  • Deaf young people are often used to seeing the same small audiology team who know them well and may see a doctor regularly.
  • Deaf young people often describe problem with communication when they move clinics, both one-to-one with clinicians and when attempting make appointments.
  • Severe/profound hearing loss from childhood is a rare occurrence in an adult clinic and deaf young people may feel that staff don’t fully understand their particular needs.
  • Deaf young people are often confused by the differences between children’s and adult services. For example why do they need to change hearing aids simply because the adult service uses different models, why does their hearing aid prescription change from DSL to NAL, why do they need to see a GP for ear syringing when they have always had microsuction at the clinic before, why can they no longer call or email their audiologist directly with a problem but need to go through a general hospital booking system, and understanding open repair clinics when they are used to ringing up and collecting a replacement hearing aid ready programmed when needed?
  • Some deaf young people are unable to make appointments themselves using a telephone only booking system and resent needing to ask another person to make appointments for them.
  • Deaf young people are often confused by the differences between services in different areas such as when they live away from home during higher or further education.
  • Deaf young people are frustrated by needing to repeat their story each time they see someone new and there are particular challenges when notes aren’t transferred between services.
  • Deaf young people describe feeling very uncomfortable in general waiting areas with elderly patients.
  • Deaf young people vary enormously in their development and readiness to move on to adult services. They welcome flexible transfer ages and being fully involved in the decision when to change.
  • Deaf young people have been left with no service provider when the children’s service ended at 16 and their new adult service didn’t take them until they were 18.

What deaf young people and their families welcome:

  • Flexible transfer ages taking into account the young persons needs and wishes. In education the formal transition planning process starts at 14 and it may be appropriate to begin discussing audiology transition around the same time.
  • Support in acquiring the knowledge and skills needed to navigate and make best use of adult hearing aid services.
  • Holistic information on all aspects of health, educational/vocational and social needs into adulthood.
  • Being given the opportunity to foster independence by talking to them directly and maybe without the parent present.
  • Being able to take more control and increasing self-management.
  • Having a named person/transition worker they can contact with any problems.
  • Not being talked to like a child and feeling that clinicians are talking to their parents instead.

Implementing transition services:

  • Poorly planned transition from children’s to adult health services can be associated with increased risk of non-adherence to treatment and loss to follow-up, which can have serious consequences for the young person.
  • Successful transition planning and programmes are crucially dependent on collaboration between children’s and adult services as well as engaging with young people to fully understand what they need and expect from the process.
  • Transition should be viewed as a process and not as a single event and needs to be flexible enough for individual needs to be met.
  • Staff working with young people should balance the need of the young person for privacy and confidentiality, and their wish to take increasing responsibility for their own health care, with the need for their parents to have sufficient information to provide the support that young people often require.
  • There are several models for good transition and there is no clear evidence that one is superior.

Useful NDCS resources

Commissioning guidance

This leaflet is written for those responsible for commissioning audiology services for teenagers and young adults, in particular those who have grown up with congenital or acquired permanent childhood hearing impairment (PCHI). It highlights the key differences between paediatric and adult audiology care, and the main challenges deaf young people meet when transitioning between services. It contains quality statements that should be considered during the commissioning process to ensure appropriate services are available to meet the needs of young adults.

Cochlear implants; young people’s views

Research funded by NDCS and carried out by the Ear Foundation into the views of young deaf people who use a cochlear implant.

Information and events for young deaf people aged 14+

For a guide to all the information resources and events NDCS runs for young people over the age of 14 years click here.

The NDCS Buzz website also has lots of information  for young people.

Quality standards and good practice guidelines in transition

The NDCS Quality Standards ‘Transition from paediatric to adult audiology services: Guidelines for professionals working with deaf children and young people‘ (2011).

NDCS/NHS Devon Transition Project

During 2009-10 NDCS and NHS Devon undertook a joint project as part of the NHS Improvement Pilot Projects. A copy of the poster presentation is available here and the final report is available here.

‘Over to You’ Project

Over to you was a Department of Health funded project that NDCS  undertook in partnership with the boroughs of Newham, Tower Hamlets and Hackney in London between April 2010 and March 2011. Working with volunteers running events for deaf young people aged 13-16 years, the project aimed to improve and record deaf children and young people’s experiences of audiology services. You can download the final report from the project here.

‘Who am I?’ Project

Who am I? was a three-year project – supported by The National Lottery through Big Lottery Fund – for young deaf people aged 13 to 19-years-old and their parents living in Scotland which ended in 2011. The project aimed to improve young deaf people’s self-esteem so they feel comfortable with their deafness and confident about being independent in a hearing world, and encourage parents to feel positive about their child’s transition towards independence and be confident in supporting them.  The Who am I? project has produced two booklets, one for parents featuring tips from parents and young deaf people, and one by young deaf people for young deaf people. Both come with a DVD featuring deaf young people and their families telling their own stories, the challenges they have faced and how they have overcome them. The DVD shows people that being deaf is not an obstacle to having a great life and positive future. You can download the booklets ‘Who am I? Deaf young people share their stories’ here and Who am I? Parent to parent here.

NDCS presentation

You can download a presentation I gave in February 2016 on transition here.

 

Useful resources produced by other organisations

Transition arrangements for young people with complex health needs from children’s to adult services

This themed review by the Care Quality Commission looked at the arrangements made for children with complex health needs as they move from children’s to adult services. Download copies of the report From the pond into the sea; Children’s transition into adult health services 

Department of Health

Publications, resources and literature review on transition available here  including Transition: Getting it Right for Young People (DH, 2006)

National Sensory Impairment Partnership (NatSIP)

NatSIP published ’14+ Transitions Protocol and Recommendations for Young People with Sensory Impairment’ in February 2012. The document is available to download here.

Action Plan on Hearing Loss 

NHS England & Department for Education published What Works: Hearing Loss and the Transition to Adulthood (2017).

Preparing for Adulthood

The Preparing for Adulthood programme (PfA) is delivered by the National Development Team for inclusion (NDTi). The programme is funded by the Department for Education as part of the Delivering Better Outcomes Together consortium.

Transition to Adult Services 

Bringing together best practice examples, resources and experiences of young people by the Royal College of Paediatrics and Child Health.

Participation Works

Participation Works is a consortium of six national children and young people’s agencies that enables organisations to effectively involve children and young people in the development, delivery and evaluation of services that affect their lives.

For further information and to download useful resources click here

Transition Information Network

The Transition Information Network is a specialist network of the Council for Disabled Children set up to provide targeted information and resources about transition through online resources, publications and events. It is a source of information and good practice for disabled young people, families and professionals. For more information click here.

You’re Welcome; Making health services young people friendly (DH, 2007)

The You’re Welcome quality criteria sets out principles that will help health services become young people friendly. It covers areas to be considered by commissioners and providers of health services. Content is based on examples of effective local practice. This second edition includes a new section covering Child and Adolescent Mental Health Services. You’re Welcome has been included in the NHS Operating Framework for 2009/10 and highlighted in DH/DCSF Healthy lives, brighter futures – the government strategy for children and young people’s health. Further information here.

 

 

 

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)


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