KidsAudiologist

Archive for the ‘otitis media’ 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”

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.

 

 

Families who have a child with a mild, moderate or unilateral deafness frequently report that their child’s needs are poorly understood. This is often because the effect of their hearing loss may be more subtle than for those children with a more severe hearing loss. For example a mainstream teacher will find the child can hear them fine when working one-to-one with the child and not appreciate that the they can’t hear voices from further away and when there is background noise. This means that children have very reduced opportunities to benefit from hearing what is going on around them – incidental learning – and are therefore more likely to show delays in speech, language, educational, & social development than their normally hearing peers. Sadly, due to funding and capacity issues, local specialist support resources are often prioritised towards those children with more severe hearing losses so that training and awareness in schools may be low. Parents understanding and advocating for their child’s needs becomes even more important.
In 2010, NDCS was awarded a 2 year grant from the Department for Education under the SEN and Disability “Improving Outcomes” theme. We have been working with parents and professionals, providing specialist information and support on key barriers to achievement and to specific groups with a significant attainment gap. One strand of this work that I’ve been involved with has been to provide new information resources for parents that are available free to download – ‘Mild deafness’ and ‘Unilateral deafness’. This weekend I was involved in developing our first weekend for families of children who have a mild, moderate or unilateral deafness. All the deaf children were between 3 and 7 years old and they and their siblings appeared to have a great time occupied in the children’s activities sesssions. Parents attended sessions sharing their experiences, and heard from a young adult role model who grew up with moderate hearing loss in both ears. They also attended information sessions on audiology, technology, education, and NDCS events and services. 12 families attended and for 10 of them it was the first time they or their children had ever attended an NDCS event. Many had been told or held the perception that their child wasn’t ‘deaf enough’ to access specialist services, Disability Living Allowance, resources that help children develop listening skills, and even NDCS. A few families had shown an interest in learning sign language to help communication at times when their hearing aids couldn’t be used and to mix with other deaf children, but many had been poorly advised including that it would have a negative impact on their child’s spoken language development. This may have been one dimension of why families often hadn’t persued joining local groups and meeting other families with deaf children. Most of the children had never met another child that uses hearing aids and it was a real joy watching them playing together and making new friends ‘like them’ over the weekend. I believe the parents have all gone away feeling more confident that they understand their child’s needs and will be better able to make informed choices on behalf of and with their child.

So if you have a child with a mild, moderate or unilateral deafness remember that “NDCS uses the word ‘deaf’ to refer to all levels of hearing loss” and that all of our current services and events are open to you.

Earlier this year I had the pleasure of interviewing Scott, Siobhan and their 9 year old son Bayley who told me all about what it’s like to have a cleft palate and hearing problems. NDCS has launched the video this week during Cleft Lip and Palate Awareness Week 2012. Their Consultant Audiovestibular Physician also shares some background information on how cleft palate affects the ears and what happens in the specialist cleft clinic. Bayley has fluctuating glue ear and had grommets inserted when he was 5 years old. He tells us what it was like coming into hospital for the surgery. The only other thing you need to know is that he is mad about football!

With huge thanks to the Vaughan family, Dr Raouf Chorbachi, and Great Ormond Street Hospital for Children for taking part, sharing their stories, and allowing us to video them.

Update: Netbuddy has now merged with Scope. For more information on learning disabilities and hearing loss see new post here.

I’ve been working with the fantastic Netbuddy website which is full of handy tips and bright ideas from parents, carers, teachers and therapists with experience of learning disability and autism.

Hearing loss is known to occur in a large percentage of people who have a learning disability. But hearing problems may be unrecognised or undiagnosed because behaviours associated with hearing loss may have been thought of as being part of the learning disability, or because local audiology services are not accessible to them.  Unrecognised and unmanaged hearing loss can cause or contribute to speech or language delays, difficulties learning and reading, and cause difficulties communicating with others. Hearing loss can therefore have a significant impact and exacerbate the effects of an individuals learning disability.

So this week we launched a new Audiology Info Pack giving information on the impact of undiagnosed or unmanaged hearing difficulties, signs of ear or hearing problems to look out for, and top tips for parents and carers. Netbuddy also have an active forum to ask questions and get support from other families, including an ‘Ask the expert’ section where professionals will reply to your queries. Catch me here if I can help.

Three babies are born every day with a cleft lip and/or palate, and Cleft Lip and Palate Awareness Week is a chance to spread the word and educate about this condition and the great work that the Cleft Lip and Palate Association (CLAPA) do.

Did you know that children born with a cleft palate are very likely to have difficulties with their hearing?

The most common type of hearing loss in children with cleft palate or cleft lip and palate is caused by otitis media with effusion (OME), commonly known as ‘glue ear’. Glue ear is a buildup of sticky fluid in the middle ear. For the ears to work properly the middle ear needs to be kept full of air. The Eustachian tube runs between the middle ear and the back of the nose and throat area and shares many of the muscles of the palate. The Eustachian tube opens regularly during swallowing, yawning and speaking, allowing air to be exchanged. Generally in children this tube is not as vertical and wide as it is in an adult and as a result doesn’t work as well. In children with a cleft palate there are likely to be additional structural abnormalities of the Eustachian tube and the muscles may not work as well. If the Eustachian tube doesn’t open efficiently or becomes blocked, air cannot enter the middle ear. When this happens, the cells lining the middle ear produce fluid. With fluid filling the middle ear, it becomes harder for sound to pass through to the inner ear and these sounds become more muffled.

Glue ear may not cause any problems in hearing or it may cause a mild to moderate deafness (20-60 dB) in the affected ear. For most children without a cleft palate, glue ear is a temporary condition that they grow out of by around 8 years old as their Eustachian tube and other cavities grow larger. However, almost all children with a cleft palate will get glue ear before the age of one and it may persist much longer than for other children. For this reason children should be monitored closely. Depending on the child and degree of deafness caused by the glue ear several options are available.

For further information on the types and causes of hearing loss, and managing any hearing difficulties download the NDCS booklet Cleft palate and deafness; Information for families. (Log in is required but membership is free and takes just a few minutes on-line.)


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