KidsAudiologist

Archive for the ‘glue ear’ Category

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.

 

 

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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.

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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?

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:

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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

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.

#FollowFriday (or #FF) is a way of recommending interesting and/or helpful people on Twitter to your followers. For more information on using #FollowFriday well see @SLPTanya‘s excellent blog. I find Twitter really valuable and struggle to narrow down my recommendations to just a handful each week, risking cluttering up everyone’s timelines! So I’ve had a browse through my favourites and have come up with a list of those Twitter accounts that I most often save tweets from. I’ve also included links to their websites for those readers who aren’t Twitter users.

So for really useful audiology content (in no particular order) here are my #FollowFriday’s:

For wonderful #AudPeeps (audiologists and other professionals interested in hearing care) who are always happy to tweet/chat my #FollowFriday’s are:

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.


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