KidsAudiologist

Archive for the ‘ABI’ 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.

 

 

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

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.

How long a battery lasts depends on the type and power of hearing aid, how long it is worn each day, what kinds of situations the hearing aid is worn in (it’s processor has to work harder in noisier environments for example) and whether it is also supplying power to integrated FM or wireless FM receivers. Most children in the UK are issued with disposable batteries and many of them are using several hundred every year – wow! What are you doing with your used ones?

All used batteries should be disposed of safely and preferably recycled. Some audiology services will ask you to return old batteries when requesting new ones and they will recycle the old ones. It is good practice to keep your used batteries in the original packaging so that you can be sure that no old batteries have gone missing and to keep the batteries safe. If you are not asked to return old batteries you can safely dispose of them in your household rubbish. However, many local councils now have recycling schemes for batteries including household collection. Alternatively many large stores that sell batteries offer boxes to keep old batteries in and recycling schemes. For more informaton on recycling batteries in your area go to the Directgov website or visit Battery Back and type in your postcode to find the collection point nearest your home.

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.

Just occasionally paediatric audiologists, particularly those who work in cochlear implant programmes, will meet a child who has been born without cochlea or auditory nerves, or other abnormality of the inner ear that makes a hearing aid or cochlear implant useless. This diagnosis has just been given to the parents of a 4 month old boy and other parents in the same situation have shared their experiences on the NDCS Parent Place forum. This must be devastating for parents who have held out hope for a technological miracle that will help their little one access hearing and speech. Some parents have been researching the option of an auditory brainstem implant (ABI).

An ABI works in a similar way to a cochlear implant and in fact the external parts look just like a cochlear implant. But instead of electrodes inserted into the cochlea, the electrodes stimulate the auditory brainstem directly, bypassing the ear and auditory nerve. This makes the procedure more invasive than that for a cochlear implant.

ABI’s are used most often for adults who have suffered trauma to their hearing nerve which means that it is no longer useful and Manchester Cochlear Implant Programme have implanted more than 50 adolescents and adults in this group. Trauma usually occurs during surgery to remove a tumour from the hearing nerve. Once the hearing nerve has been damaged in this way the person would not benefit from hearing aids or a cochlear implant because the sounds could not transfer from the ear to the brain along the nerve. ABI has only been used for adults who have previously had hearing and use speech to communicate. Where a cochlear implant stimulates different points corresponding to different frequencies along the cochlea, the brainstem does not have this separation of frequencies so the ABI cannot separately stimulate different groups of nerves corresponding to distinct frequency ranges. The ABI therefore provides a sensation of hearing that can help aid lip-reading and provide other clues used in spoken communication (for example rhythm and speed of speech) but these adults are unable to use the ABI alone to hear speech without the additional help of lip-reading etc.

Although ABI’s have been available in the UK for the last decade only a handful of children have had the procedure here. The outcomes for children are more variable than for children who use a cochlear implant – they may only offer access to louder and environmental sounds although some are accessing speech. Like cochlear implants the emerging evidence is that the earlier implantation takes place, the better the outcomes for the child. ABI’s have been used in cases when there is no cochlea (and therefore nothing to implant with a cochlear implant), when the cochlea has suffered extensive damage (such as following meningitis) and an electrode can’t be inserted into the cochlea, and when there is no auditory nerve.

It is understandable that most hearing parents opt for cochlear implants for their deaf child – opening up options for their child to develop spoken language as well as BSL and potentially other languages too. For parents of children in the ABI candidature group it appears that most have instead been opting to concentrate on developing British Sign Language as their child’s first language without technological intervention but there is increasing interest in the option of an ABI.

Further information on auditory brainstem implants including further reading links and research go to the NDCS webpage.

Updates and family stories

Hope for Hearing is a trust that was set up to raise funds for 22 month old Evie’s ABI which was implanted in Italy in June 2012. You can read more about her story and her family’s experiences of the assessment and surgery etc.

amazing amelia had her ABI at 2 years 8 months. Read her blog and watch videos of her progress.

The Fight for Finn is a trust that was set up to raise funds for 18 month old Finn’s ABI which was implanted in Italy in July 2012. You can read more about his story and his family’s experiences of the assessment and surgery etc.

Read Oliver Bosche’s story on the MailOnline on watch him on STV “Deaf toddler hears for the first time after pioneering treatment” in April 2013

Read Danny Pickards story on the MailOnline from February 2014 and his website Help me Hear


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