KidsAudiologist

Archive for the ‘hearing tests’ Category

As part of the new Health and Social Care Act 2012 the commissioning (or purchasing) of NHS services will be the responsibility of local Clinical Commissioning Groups (CCGs) except where the service is prescribed in legislation. Prescribed services will be commissioned by the NHS Commissioning Board (NHSCB). Yesterday the DH published the recommendations of the Clinical Advisory Group for the services that should be nationally commissioned from April 2013. (The document is dated June 2012 but it was only publically available yesterday!)

The recommended services that are included and of interest to the audiology and ENT profession, as well as parents of deaf children are:

  • Specialist Ear, Nose and Throat Services for Children and Young People including surgical management of rare conditions, surgical management of more common conditions when the child or the procedure is high risk (including the need for PICU or Specialist Anaesthetic management), provision of specified procedures and Specialist Audiology Services. Specialised audiology services consist of those audiological services which are part of a paediatric hearing aid service. In some cases specialised audiology services may not be co-located with specialised ENT surgery services. (p21 & 130)
  • Cochlear Implantation Services (p26 & 200)
  • Bone Anchored Hearing Aid Services (p26 & 201)
  • Auditory Brainstem Implantation Service (p26 & 203)
  • Middle Ear Implantable Hearing Aid Services (p26 & 205)
  • Other Specialised Ear Surgery (the plastic surgery element is included within the proposed regulation on Specialist Plastic Surgery for Children and Young People.) (p26 & 207)
  • Specialist Mental Health Services for Deaf Adults & Deaf Children & Adolescents (p17 & 103)

Also of interest to us because of the populations involved:

  • Specialist Services to support patients with complex physical disabilities which including Specialist Augmentative and Alternative Communication Aids (p11 & 44)
  • Cleft Lip and Palate Services (p15 & 77 & 152 & 158)
  • Specialist Genetic Services (p20 & 95)
  • Specialist Plastic Surgery Services for Children and Young People which includes congenital malformations of the ear including: absence of ear, absence/atresia/stricture of auditory canal, macrotia, microtia, misshapen ear, misplaced ear. And congenital malformation syndromes predominately affecting facial appearance incl Goldenhar syndrome, Robin syndrome and Treacher-Collins syndrome. (p23 & 158)

There are also some exisitng services that are already regionally or nationally commissioned that are recommended for transfer to new regulations:

  • Alström services (p28)
  • Complex neurofibromatosis type 1 services  (p29)
  • Mental health services for Deaf children and adolescents will include services provided by Highly Specialist Deaf Child and Adolescent Mental Health centres including outreach when delivered as part of a provider network. (p29)
  • Craniofacial services (p29 & 152)
  • Neurofibromatosis type 2 services (p31)
  • Primary ciliary dyskinesia management services (p32 & 166)
  • Rare mitochondrial disorders services (p32)
  • Stickler syndrome diagnostic services (p34)

What do you think?

National commissioning has the potential to be a very positive move for those low volume, highly complex, high cost interventions such as cochlear implants, and this could mean much greater equity of access across the country to these types of procedures. The big surprise to me is the paediatric hearing aid services included in the recommendations as it neither fits the low incidence or high cost descriptions used to identify national specialist services. More so than many of the other services this recommendation has the potential to have a very major impact on how current services are provided in terms of location, staff, and integration with the rest of the paediatric audiology service. Specialist services are likely to have more experienced staff who see larger numbers of children and build up more expertise. But how is this organised? It isn’t fair to expect families with young deaf children to travel great distances on a regular basis to attend specialist services so how will care closer to home be managed? With a split between local and specialist centres? With a network arrangement where staff travel to see children in outreach centres and/or work with local teams? Or another way?

What are your views? What would you like to see happen?

Update 14th September 2012: Some of your views can be found here.

Update 18th September 2012: The NDCS response to this news can now be read here.

Children in the UK who are clinically suitable candidates and whose family chooses this option for them, have been offered bilateral cochlear implants since 2009. This followed recommendations made by the National Institute for Health and Clinical Excellence (NICE) who also said that children who had one cochlear implant prior to their guidance being published could be offered a second implant in the other ear (sequential implantation). At the time the evidence base was poor due to the small number of studies and the small numbers of participants, but NICE were persuaded that there were benefits to children having two implants including improved speech understanding in noisy situations, directional perception of sound, easier and less exhausting listening, and prevention of auditory deprivation and impaired development of central pathways by early stimulation of the auditory nerves. Within the guidance NICE recommended further research into the benefits of bilateral cochlear implantation in children and plan to review the evidence and their recommendations in the future.

As a result of this recommendation 15 cochlear implant centres across the UK formed a consortium and agreed on appropriate test procedures to audit the benefit children receive from bilateral cochlear implants. This group now have data from around 900 children and will be presenting their findings at a conference in Southampton on 11th April 2013. The conference is free to attend for adults and parents of children who use cochlear implants, and costs £50 for professionals. The National Paediatric Bilateral Audit website includes more information on the research, some preliminary results and online booking form for the conference.

#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.

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.)

This weekend it was my pleasure to be involved in an NDCS weekend for families who have children with Auditory Neuropathy Spectrum Disorder (ANSD). NDCS has an established family programme including ‘newly identified’, ‘pre-school’,  and ‘pre-secondary’ weekends and we’ve recently been trialling some new ones. In 2008 NDCS funded some research carried out by Manchester University looking at the experiences of parents of children diagnosed with ANSD. You can read the full report (2011) here but some of the messages from parents was that they felt isolated, that there was a gap in information available for them and that deaf organisations such as NDCS weren’t meeting their needs. In response we embarked on a training programme for staff, have started updating current resources, will be publishing ‘ANSD; From parents to parents’ from the research in the near future, and piloted a new weekend for families in January.

Staying in a hotel, with a creche and children’s activities, information sessions, and lots of opportunities to mix with other families means that we have a relaxed environment where parents can ask questions of NDCS staff, the invited presenters, and one another. More importantly they get to talk to other families who understand their situation and feel less alone in the world. Children, who are often in mainstream education and have never met another deaf child before are often surprised to meet other kids who sign and/or wear hearing aids & cochlear implants.

As soon as we started taking bookings for the pilot weekend in January we knew it was needed – each weekend takes 12 families and it was 100% oversubscribed. Taking on board all the feedback from parents at the first weekend in January the second was even more successful. The information sessions included the medical aspects of ANSD with Dr Glynnis Parker (Consultant Audiovestibular Physician, Sheffield Children’s NHS Foundation Trust), my session on making the most of the hearing you have and technology you use, a session on communication with Susanne Harrigan (Speech & Language Therapist, The Ear Foundation), and one on environmental & assistive listening devices including FM equipment with Jeremy Hine (Connevans).

Already we have 20 families on a waiting list for the next ANSD weekend. Although a date hasn’t yet been set for that there are lots of other free events & weekends taking place – click here to see what’s happening in your area.

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