Aims and objectives:
UK paediatric cochlear implantation began in 1989 at Nottingham; devices are surgically implanted to provide deaf children with useful hearing. To maximise the benefits this surgical intervention provides, children require life-long multi-professional support.
The partnership formalised in 2004 between Nottingham Cochlear Implant Programme, Queen's Medical Centre, and The Ear Foundation, a voluntary body, aimed to bring together the skills and facilities of each organisation, thereby enhancing the complex multi-professional service provided by the implant programme. The partnership addresses the changing needs of children as they grow to adulthood and provides training for the implant team and professionals who support the children.
This change enhances the patients' experiences by enabling parents and children to make informed choices, promoting co-ordinated working within the implant team in Nottingham and throughout the UK, ensuring best possible patient care outside the clinical setting. The change crossed health and education boundaries, as well as institutional boundaries, as promoted by NSF for Disabled Children and Young People, by providing opportunities for a range of professionals to train together and improve their joint working practice.
For children and families, the change provides peer group support and information in the non-clinical setting of The Ear Foundation, enabling them to articulate their own needs in making decisions about long-term care.
Support for the change:
Experienced staff in the new field of cochlear implantation are scarce and demand for the service is growing. The change enables the Trust to maximise effectiveness of the implant team and provides additional services and tools for patient support and Continuing Professional Development.
The necessary change was identified through discussions and questionnaires with users of the implant service and piloting of an education programme for professionals and parents at The Ear Foundation. Stakeholders were involved throughout and include the national parents' group, Cochlear Implant Children's Support Group (CICS), National Deaf Children's Society (NDCS) and Royal National Institute for the Deaf (RNID). Local educational, speech and language and social services were included, ensuring full participation and commitment to the collaboration.
Following the successful pilot of activities and joint development of well received educational materials, the East Midlands NHS Innovation Hub co-ordinated the formalisation of the relationship between the Trust and voluntary partners, to secure its future.
Support was given by the Steering Group of the Implant Programme, Clinical Directorate, Acting Chief Executive at QMC and Trust Board of the Ear Foundation, which includes parents. The Innovation Hub facilitated the drawing up of a formal agreement with the Trust's solicitors, providing a foundation for joint current and future development of services and materials.
Implant programme staff were fully involved at all stages and demonstrated their support by participation in developing the educational programmes and voluntary work at parent and children weekends.
Patient and public influence:
The need for change was led by the implant programme's regular questionnaires of parents and children who identified their major needs for: strong links between implant programme and local educational services; local multi-professional knowledge and support of technology; independent information about cochlear implantation and peer support for this new, growing population.
Evaluation of the pilot education programmes shaped implementation of the education programme and delivery - both at The Ear Foundation and within the community.
Parent questionnaires by the Ear Foundation influenced the facilities they provide to support programmes e.g. Saturday programmes promote involvement of fathers, additional languages promoting equity of access and provision of crèches.
To ensure programmes are current and evidence-based, the Ear Foundation provides audit and research support, with several externally funded joint research projects, based on qualitative research, influencing patient management.
Impact on the workforce:
There is a severe shortage of professionals with specialist training in management of children with cochlear implants; this collaboration provides access to training in the latest technology and provides training to allow other professionals to carry out routine assessments, thus improving delivery and efficiency of service.
The Ear Foundation hosts programmes of continuing education, ranging from accredited courses to informal lectures for all professionals.
Measuring the results:
There are no other 'Ear Foundations' or such collaborations at other implant programmes to compare performance.
Measurable outcomes include take-up rates by parents, children and professionals, the support given by all the national organisations that use of our joint expertise and by course evaluations. In addition, the Nottingham Cochlear Implant Programme has a high long-term device usage rate compared with other UK programmes.
The stakeholders are involved in programme planning, to ensure educational materials are integrated not duplicated, delivery and dissemination, ensuring the work of the Partnership is widely known.
Improved performance:
Our collaborative programme attracts local, national and international participation with course content evaluations consistently above 90%. The database recording interest in programmes has 2,500 entries, from professionals to parents. We have been invited to present our new way of working at international conferences.
In 2004, one of the jointly developed education programmes, SNAP Dragons, received a publishing contract.
Reflecting diversity:
The patient population covers all ranges of social and ethnic backgrounds and many (30%) have additional disabilities. Our work provides materials and resources in a range of languages and formats, according to need e.g. home, school, face-to-face, paper, video or internet.
Staff involved include: audiology, medical, surgical, speech & language, educational, radiological, psychological and social service backgrounds. Our joint multi-professional training facilitates co-ordinate work between these groups.
Other UK implant centres support our education programme and utilise these materials. Some are used by the National Early Support Programme (DfES and DH) as examples of good practice.
Sharing the learning:
Articles have been published in parent and professional journals, magazines and presentations, often invited, given at national and international conferences.
Outstanding features:
Close collaboration in this partnership allowed identification and implementation of new and innovative multi-agency education programmes for staff and patients, which required the successful crossing of health and education boundaries, vital for long-term care of children with implants.
The enthusiasm of this collaboration is evidenced by commitment of the Trust, charity and Innovation Hub, leading to a formal and sustainable service with the capacity to expand and adapt as technology and patient requirements change.
