Archive for the ‘glue ear’ 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”
- In: ABI | acquired hearing loss | ANSD | audiologist | Auditory Brainstem Implant | auditory dyssynchrony | auditory neuropathy | auditory neuropathy spectrum disorder | BAHA | bone-anchored hearing aid | children | cochlear implants | deaf | earwax | glue ear | grommets | hearing aids | hearing impaired | hearing protection | hearing tests | late-onset hearing loss | newborn hearing screening | NHS | otitis media | otitis media with effusion (OME) | progressive hearing loss | single-sided deafness SSD | special educational needs
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Yesterday I attended the launch of the new National Commissioning Framework for Hearing Loss Services.
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.
Harvey gets grommets
Posted on: November 7, 2012
This week NDCS launched their first information publication for audiology and ENT clinics to offer the under 10’s. I developed the concept and story, and Tim Bradford did the illustrations.
What it is?
A comic for young children who have been diagnosed with glue ear and whose parents have been offered and opted to have grommet surgery. The comic leads a child through the steps they have encountered and what will happen next – coming into hospital, the surgery, and how afterwards they can expect to hear a lot better. The comic can be read alone or with their parents, and there is a space to draw pictures when readers imagine what Harvey might be dreaming about. Download a copy here but it would be even better to have paper copies available to hand out to kids in clinic. Order some free online or from the Helpline.
What it isn’t?
Harvey gets grommets isn’t a decision aid for families. There are several potential options for children including ‘watchful waiting’ or trial of hearing aids. For some surgery isn’t acceptable or appropriate. The vast majority find grommets resolve the issue of glue ear for them. But there are a smaller group where grommets don’t work for them, occassionally they have to be removed due to infection, and those who unfortunately end up with long-term hearing loss (a potential complication of surgery but also of leaving the glue ear alone and not treating, putting parents in a no-win situation).
NDCS also has information for parents that discuss the different options available as well as links to other resources that are useful.
I’m hoping now to build on this resource and develop some further comics for children. What do you think? I’m thinking a trip to the audiology clinic, or perhaps one on getting hearing aids for the first time? Any other suggestions?
Your thoughts – Children’s hearing aid services to be nationally commissioned
Posted on: September 14, 2012
Yesterday I published news that specialist paediatric audiology services are to be nationally commissioned from next April. Discussion with colleagues and on Twitter has confirmed confusion about the plans. And in response to the link posted on the BAA Facebook page I received some varied responses:
In summary:
The biggest question appears to be how much of a typical paediatric audiology service will fall under “Specialist Audiology Services. Specialised audiology services consist of those audiological services which are part of a paediatric hearing aid service”? We don’t know at this stage – it could mean just the advanced audiological tests such as diagnostic ABRs (used mostly for diagnosis following newborn screening) or it could also include hearing aid fittings since we know that fitting aids to babies is very complex. My working assumption is that they are using the same kind of definition that the Department of Health used in their Transforming services for children with hearing difficulties and their families; A good practice guide (2008) that used the term to mean fitting of hearing aids on the under 3’s and associated testing.
Whichever parts of the service are included the issues remain the same, with the most important of all – how to ensure good integrated care across the child’s care pathway when several different services and commissioning bodies are involved? Lots to tease out and lots of clarity still needed about what this announcement will mean.
UPDATE 18th September 2012: The NDCS response to this news can now be read here
Weekend for families of children with mild, moderate or unilateral deafness
Posted on: June 11, 2012
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.
- In: audiologist | children | cleft lip | cleft palate | glue ear | hearing aids | hearing tests | otitis media
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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.
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.
