KidsAudiologist

Archive for the ‘auditory neuropathy’ 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.

 

 

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.

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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