Annual Report
MISSION STATEMENT
“The Ear Foundation is an independent charity that helps deaf people and their families make the best use of technology to improve hearing, communication and spoken language”
We do this through:
- Education
- Family and clinical services
- Carrying out research
- Advocating for access to the latest hearing technologies
TRUSTEES’ REPORT 2009
Our aim is to ensure that deaf children, young people and adults of today have the best possible opportunities to maximise the benefits of the rapidly developing new hearing technologies, wherever they live.
The Ear Foundation services include:
- Our Family programme, Connect and Communicate, including groups for children, young people and adults, resources and information
- Educational courses and conferences, including a community education programme
- Family and child-centred research, looking at the outcomes from implantation in everyday life and how to maximise them
- Our Sound Advice service, enabling those with the hearing technologies to learn further how to use them in everyday life
- Advocating and lobbying for access to the latest hearing technologies
Key achievements during 2009 included:
- Increase of 159% in numbers attending courses throughout the UK
- Development of website for information, teaching, dissemination of research
- Development of Sound Advice service for children and adults
- Successful campaigning to achieve the support of NICE for bilateral cochlear implantation for children and for implantation for adults
- Publication of key research about bilateral implantation, and early diagnosis to implantation
A key achievement during 2009 was The Ear Foundation’s 20th birthday in March. During that month, we held our birthday party at The Ear Foundation, with the Lord Mayor of Nottingham welcoming over 200 people, and with press and TV coverage.
The celebrations continued with a concert Sounds Inspiring by deaf and hearing musicians, an international professional conference Time for Change, a civic reception with the Lord Mayor of Nottingham, sponsored walks throughout the country called Hear, Talk and Walk and the month concluded with a larger than ever family weekend at Center Parcs.
Over 1,000 people were involved in our celebrations, which provided opportunities for parents, children, adults and professionals to get together, to share what implants offer and to learn about the latest technologies.
Family Programme: Connect and Communicate
This family centred programme is subdivided into 5 different sections.
- Babies and Toddlers
- Ready, Steady Go – for 2-4 year olds
- Leaping on with Language – for 5-11 year olds
- To Infinity – for 11-18 year olds
- Adult users
And during this year, activities were organised by The Ear Foundation for all of these groups. These activities included:
- 2 Special Branch sessions for children with profound and complex disabilities and cochlear implants
- 2 Summer residential groups – for teenagers with cochlear implants
- 2 Ready Steady Go Saturday sessions
- 17 Small Talk Sessions for parents – throughout the UK
- 3 Teens Saturday Groups – Teenz United
- Center Parcs Family Weekend – with over 300 family members
- 9 Adult Support Days
During 2009, The Ear Foundation had 82 families attending in house courses and over 400 families attending courses around the UK.
The Connect and Communicate programme made 911 contacts with families in total during 2009, nationally and internationally.
Weekly groups with the local education and speech and language services are now held for pre-school deaf children and their families. In addition our Pre-school Family Coordinator provided specialised speech and language provision for local deaf children and families.
Our Pre-school Family Coordinator has provided advice and input to NDCS early identification family weekends and the development of an early communication skills pack to be distributed to all families attending the weekends.
Suzanne continues to work with Cochlear Europe in facilitating a package called Small Talk for families of newly identified deaf babies across the country.
During 2009 she worked with Cochlear Europe to develop the sequel, Chit Chat, a DVD, to support families in the development of spoken language with their children.
For parents of children at the primary stage, we are working on a package called Leaping on with Language, which will provide web-based resources to encourage language development at this stage.
Our family work continues through the teenage years, with our programme for deaf teenagers with cochlear implants, and in the summer of 2009 we held a successful teenage residential programme. Our work with teenagers continues with the support of the National Deaf Children’s Society, with whom we run communication weekends for young deaf people from throughout the UK.
A major area of growth this year in the family programme has been the work with adult implant users, in collaboration with Hearing Concern LINK, and with the National Cochlear Implant Users’ Group. Several group sessions have been held, on communication issues, use of the technology, music and use of telephones. In addition, adults have had individual sessions where they can discuss their own issues.
Our Center Parcs Family Weekend was larger than ever, with over 300 family members, including adult users, meeting to gain mutual support and information.
During 2009, discussions began with users of bone anchored hearing aids, and their support group, BUSK. It was decided that BUSK would become part of The Ear Foundation, in line with our strategy of supporting those using all hearing technologies, and this will take place in 2010.
Clinical Services: Sound Advice for families and users
During 2009, The Ear Foundation’s service called Sound Advice for cochlear implant users, aimed at helping them to make the most of their implants, developed further. It is aimed at both adults and children and provides technical advice, habilitation and assessment.
The children’s service focussed upon providing assessments which are designed to inform the local services, particularly education, which support children with implants and 58 children’s assessments were provided (35 in 2008).
The adult service has been developed in collaboration with Hearing Concern LINK during 2009, with 150 adult users attending (50 in 2008). It provides the opportunity for social and peer group support, and for group and individual sessions on technology, and communication issues. Interest in the adult service led to it being provided in London with the support of St Thomas’ and Royal National Throat Nose and Ear cochlear implant centres.
Education Programme – Courses and conferences
We produce our courses brochure every six months and we held 55 in-house courses in 2009. Delegates to our in-house courses came from Italy, Sweden, Ireland, Poland, Czech Republic, Denmark, Norway, India, Iran, Austria, Spain, Greece and Belgium – as well as the UK.
“Tailor-made” courses have also been delivered on request – both held in-house and around UK and internationally, based on our courses brochure. The major area of growth in 2009 was in the 70 courses held round the UK, meeting the needs of over 1,500 delegates, a growth of 159% on 2008 figures.
This is in response to the changing financial climate, in which services find it more cost and time-effective for us to travel to them to deliver our courses.
The total of 3,500 attendees included ENT surgeons, audiological physicians, teachers of the deaf, speech and language therapists, audiologists, and learning support assistants, as well as families. Parents and carers of deaf children are welcome at all courses – either as delegates, or in delivery of the courses, ensuring that the courses remain child and family focussed.
In 2009 we further developed a new area for training – in the use of bone-anchored hearing aids, one of the other hearing technologies rapidly developing in the UK.
In the UK, we regularly give input to Teacher of the Deaf training courses, and we now deliver courses throughout the UK, with partners in North West England, North East England, South West England, Wales, Scotland and London. The Ear Foundation made major contributions/workshops at British Cochlear Implant Group Academic meeting, British Association Teachers of Deaf annual meeting, and National Heads of Educational Services meeting.
Internationally The Ear Foundation courses are run regularly with partners in Spain, Italy, Holland, Belgium, Germany, Sweden, and Denmark; and during 2009 we have taken “ad hoc” courses to Greece, Finland, Spain, Sweden, Estonia and Russia. We have been invited speakers at international conferences in Sweden, Greece and in Poland.
Two major conferences were held with international speakers:
- The State of the Art in cochlear implantation: Cochlear Implants 2009
- Cochlear Implants: Time for Change?
These two conferences challenged the delegates to look to the future: ensuring that the provision of cochlear implantation is secure for all who need it for the long-term.
Web-based learning:
We have successfully developed web-based training through iLearning with Phonak, for which we thank Chris Cartwright in particular for his help.
Twilight Lectures were broadcast on the Internet from The Ear Foundation and they were watched worldwide.
Lecturers were Dr Pat Chute (USA), Prof Bencie Woll, (UK), Prof David McAlpine (UK), Connie Mayer (USA) and Kristina English (USA) . Each year we have a special lecture in memory of our first Patron and President, Marjorie Sherman, which is sponsored by her family.
This year’s lecture was given by Dr Pat Chute with the title of Cochlear Implant Conundrums.
Our web-based training developed further with our first Virtual Conference – Round the world with cochlear implants in 24 hours. This began in Australia, with the inventor of implants, Graeme Clark, and, having travelled round the world, ended in Los Angeles. This was really popular, providing access to 12 international speakers in a time and cost-effective manner, and there are more similar events planned for 2010.
Our web-based education service, Sounding Board, attracted new visitors; during 2009, visitors increased to 20,000, an increase of 57% and the number of visits made increased by 89%. The numbers registered with Sounding Board increased by 87%.
This service enables non-specialists in the community to readily access the information they need to utilise implants fully at school and work. In June the teenage section of the site was launched, containing information which is useful for the growing group of teenagers with cochlear implants.
There is a section where they can read about other teenage users and post their own profiles for others to read. Role model profiles are provided by young adult users whose advice on issues relating to implantation is excellent.
In 2009 we added to this Clinical services and Sound Advice, where we provide support, advice and information to those using cochlear implants to enable them to use the technology fully in everyday life.
Information and resources:
We continue to ensure that up-to-date information about cochlear implantation is widely available in different formats. During 2009 we completed the following:
- Cochlear Implant 2009 information leaflet with Cochlear Europe: 15,000 copies disseminated
- Bone Anchored Hearing Aid information leaflet for 2009 with support from Cochlear Europe
- Resources translated into further languages, including Russian, Spanish, Dutch
- Counselling DVD with David Luterman – Parent to Parent with support from NDCS
- Sounding Board – this resource on the website with information on all implant systems and how to manage them with an enquiry facility – this now has world-wide usage, and is supported by Advanced Bionics.
- Booklet on the management of children with cochlear implants at the primary stage of education – support from Birkdale Trust
These information materials and all our resources are accessible on our website, and resource sales in 2009 maintained the levels of 2008.
Our website is regularly used for booking courses and buying resources; purchases can now be made in euros and dollars, in addition to GBP.
The rise in visitors per day reflects the increased use, with nearly 200,000 visitors in 2009: we average over 500 visitors per day, and 2,500,000 page hits in the year.
The top monthly visitors include India, Russia, Sweden, Netherlands, Australia, China, Ireland.
Advocacy/lobbying:
Following last year’s success in influencing NICE in their support of cochlear implantation, and of bilateral implantation for children, The Ear Foundation has been involved in the establishment of a national bilateral audit in order to ensure information is ready for the review in 2011. Several measures developed at The Ear Foundation are included in the audit; they are available on the website for access by all.
In addition The Ear Foundation was asked in 2008 to lead the care pathways working party for the Pan London review of cochlear implantation, which will inform future practice, and continues to do so, putting the care pathways developed onto the map of medicine website (reference)for accessibility for all.
Our information sheets and resources on the web-site are disseminated to all audiologists and teachers of the deaf in the UK in order to support better informed practice and more timely referral for implantation. Staff of The Ear Foundation contributed to Strategic Health Authority Workshops organised by Modernising Audiology Services programme, ensuring audiologists are well informed on cochlear implantation and its criteria and management.
During the course of 2009, our growing influence in the area of deaf education and inclusion of children with cochlear implants was recognised when NDCS confirmed arrangements to buy in 3 days per week of teacher of the deaf time from us in order to support parents of deaf children more effectively.
Family and Child-centred Research
Alex Wheeler co-ordinated our research activities, with Sue Gregory acting as consultant. Our research strategy states that our research is driven by user and family issues with user involvement, and a key goal is to ensure that users and families participate in the dissemination of our research outcomes in accessible formats.
To promote this, we developed the research area of our website, with the annual literature review undertaken with the National Library for Health, and with downloadable questionnaires and papers. We also developed a research forum to encourage participation and interest in our research.
During 2009, our research activities included the following:
- The completion of a two-year grant for research into comparing the early communication skills in young children with bilateral implants (TAIT Video Analysis) funded by Deafness Research UK
- Grant from RNID to explore the needs of adults with cochlear implants
- Grant from RNID to explore by interview adult outcomes from cochlear implantation
- Grant from Cochlear Europe to investigate the path from early diagnosis to cochlear implantation from the parental perspective
- Grant from Cochlear Europe to explore the needs of those wearing bone conduction hearing aids
Reports were delivered from all these research activities on time. Papers published from our work in 2009 included:
Huttunen, K., Rimmanen, S., Vikman, S., Virokannas, N., Sorri, M., Archbold S., & Lutman, M.E. (2009). Parents’ views on the quality of life of their children 2-3 years after cochlear implantation. International Journal ofPediatric Otorhinolaryngology, 73(12), 1786–1794.
Archbold S, O’Donoghue GM (2009) Children with Cochlear Implants: Current Status.Paediatrics and Child Health .Vol 19. 457- 463
Wheeler A, Archbold S (2009) Children with cochlear implants: the communication journey. Cochlear Implants International. 10/1: 41-62
Archbold SM, Nikolopoulos TP, Lloyd-Richmond H (2009) Long-term use of cochlear implant systems in paediatric recipients and factors contributing to non-use. Cochlear Implants International. 10/1:25-40
Ramirez Inscoe, Jayne; Odell, Amanda; Archbold, Susan; Nikolopoulos, Thomas (2009) Expressive spoken language development in deaf children with cochlear implants who are beginning formal education Deafness and Education International. Vol11. No1. 39-55
In addition, our research work was represented with 8 presentations at the European Symposium on Paediatric Cochlear Implantation in Warsaw, June, 2009, at the Annual meeting of the British Cochlear Implant Group, and at the British Academy of Audiology, amongst other major meetings. We also published booklets about our research available from us free of charge, and made our work downloadable from our website.
Fundraising Activities
In challenging times, it is important to ensure all income streams were as effective as possible. To this end, a fundraising committee has been re-established, including parents, users of cochlear implants and supporters, who actively developed community-based activities, coordinated by our fundraiser.
These included Hear, Walk and Talk – sponsored walks throughout the country, and other events designed both to raise money and awareness of our work and of the impact cochlear implants and other hearing technologies have on the lives of deaf children, young people and adults.
These activities, involving more people than ever before, have aroused greater interest in our work, which will come to fruition financially in 2010, as we have been made Charity of the Year for several organisations.
Chair’s Report
I am delighted to have this opportunity to introduce the latest Annual Report and Accounts of The Ear Foundation, published to coincide with our twenty-first anniversary.
This has not – as I foresaw a year ago – been a particularly easy year for the charitable sector, and The Ear Foundation has not been immune from the general effects of the ongoing recession. Nevertheless – and as the financial statements in this Report show – we have finished the year with a respectable financial out-turn. It was around eighteen months ago that I set us the challenge of being in surplus during 2009. In retrospect I could perhaps have picked a better year; but that we have done as well as we have is a tribute to all the hard work that our Chief Executive, Sue Archbold, and our staff have invested in the Foundation over the year.
But it is not of course the purpose of charities merely to break even; as a college Principal pointed out to me many years ago, one can always break even by doing nothing. In fact, as I review the activities that have taken place over this year, the Foundation has done more than ever to meet the needs of the young people, families and adults it serves. The courses for professionals we offer, in Nottingham and elsewhere, continue to be popular, which is no mean feat given that both local authority and Health Service training budgets are under increasing pressure. We continue to be invited to undertake research contracts, including those that give us an insight into – and hopefully some influence over – national policy.
Our Sound Advice service for individual young people and adults seeking help with hearing technologies continues to offer a lifeline to those who need it most. And our family programmes, which are largely free of charge or nearly so, offer targeted support to deaf children, young people and adults as they make their way in an increasingly complex world.
One side of our work that our friends in the UK do not always see is the impact we make internationally through our consultancy work overseas and through presentations and papers submitted to international conferences. This year has been no exception, with major presentations to conferences and other events in Warsaw, Amsterdam and the Caucasus.
We are also delivering more of our UK based work internationally through “virtual conferences” accessible throughout the world and through increased use of our ever-expanding website. We received around 12,000 overseas visitors to our website during 2009, with Russia and China heading the list. In 2010 we intend to tap into this latent market by making more and more of our learning materials available for purchase online.
We remain extremely fortunate in the number and commitment of our friends and supporters, and Sue and I would again like to thank everyone that supports the work we do. I greatly value the contribution that my fellow Trustees have made during a demanding year, and the support and encouragement that they have given to me personally.
The year to come will be even more uncertain than that just completed, and I hesitate to make any predictions; but I am certain that we are as well placed as any charity might be to make the best of whatever economic and political weather may come our way.
With every good wish
John Atkins 29 April 2010