KidsAudiologist

Archive for the ‘cleft lip’ 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.

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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.

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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