The Pindrop Foundation Adult Cochlear Implant Forum 2019 Recap

Saturday 2nd November 2019 saw a coming together of members of the cochlear implant community here in New Zealand and overseas. It was a full day of engaging discussions, information sharing, experience-based perspectives, networking and catching up with old friends and new.

Hearing loss is not just about the absence of sound. It’s about the far reaching consequences on a person’s life; from communication challenges, to isolation, loneliness, increased risk of depression, mental health issues, cognitive decline and dementia.

Over the past thirty years, advancements in cochlear implant technology have changed the lives of many adults affected by a severe or profound hearing loss, giving them access to hearing in a real world setting, with improved health and quality of life outcomes. Yet this life changing technology is being under utilized for New Zealand adults.

VIDEO RECAPS OF 2017

For a recap of our forum speakers, panelists and some of their presentations to download please check them out below:

KEYNOTE SPEAKERS

FRANK LIN

MD, PHD

Frank R. Lin, M.D., Ph.D., is the director of the Cochlear Center for Hearing and Public Health and a Professor of Otolaryngology, Medicine, Mental Health, and Epidemiology at Johns Hopkins. Dr. Lin is trained as an otologist with medical and surgical expertise in the management of hearing loss while his research is focused on studying questions at the interface of hearing loss, gerontology, and public health.

Keynote Address: Hearing, Aging, and Public Health-From Epidemiology to Public Policy in the US.

Medicine and public health have evolved through three eras over the past century. Beginning in the first half of the 20th century, infectious diseases were controlled for the first time in human history through vaccinations, antibiotics, and other strategies. Subsequently, throughout the 20th century, chronic diseases of middle and later life (e.g., cardiovascular disease, cancers) became the leading causes of mortality but have also increasingly been better controlled. These successes of public health have led to a rapidly increasing population of older adults living longer than ever before. In this third era of public health and medicine, we are now confronting the challenges of aging and how to best optimize the health and functioning of a growing population of older adults. In this era, hearing and our ability to engage effectively with the environment around us are critically important but not yet priorities in the spheres of public health and public policy.

I will discuss research over the past several years that has demonstrated the broad implications of hearing loss for the health and functioning of older adults, particularly with respect to cognitive functioning, brain aging, and dementia. I will then discuss how this epidemiologic research has directly informed and led to current national initiatives in the United States focused on hearing loss and public health. These initiatives include the Aging and Cognitive Health Evaluation in Elders (ACHIEVE) randomized controlled trial and recent passage of the bipartisan Over-the-Counter Hearing Aid Act in 2017. This federal law overturns over 40 years of regulatory precedent around hearing aids in the U.S. in order to directly improve the accessibility and affordability of hearing care for older adults. Finally, I will provide some thoughts on future trends in addressing hearing loss as a public health problem and the need to develop new policies and approaches to hearing care.

Workshop Presentation: Hearing loss and dementia- what you need to know.

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SUE ARCHBOLD

PHD, Hon LLD

Sue was a teacher of the deaf who helped establish The Ear Foundation to fund the first paediatric cochlear implants in the UK, going on to co-ordinate the Nottingham Paediatric Cochlear Implant Programme, one of the biggest in the world, She was Chief Executive of The Ear Foundation from 2008 to 2016, leading its programme of support, information, education, and research to ensure the maximum benefit from the latest hearing technologies at home, school, and work, and now retains an advisory role there.

Sue was awarded an Honorary Doctorate of Letters from the University of Nottingham for her groundbreaking work on cochlear implantation for children and adults and continues to lecture internationally on the huge impact of hearing loss, and the value of access to today’s technology and good hearing care for all.

Keynote Address: Changing public health policy on hearing care: who does it and how?

Workshop: Non-specialist counselling skills- do we need them?

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OPENING ADDRESS

ADRI ISBISTER

Deputy Director-General, Disability
Ministry of Health

Adri has over 25 years’ experience in the health and disability sector. She is the former CEO of LIFE Unlimited, a national health and disability service provider. During her career Adri has received 2 overall CEO and best business awards. Adri also supported the development implementation of the first New Zealand Disability Strategy 2001. Adri has been immersed in governance in various positions including in Corporate, PHO's, NGO's, DHB's, national Needs Assessment Service Co-ordination Association (NASCA), and disability information services.

Adri most recently comes from the Wairarapa DHB where she was CEO and has, during her tenure, led the development of cross-sector work and the implementation of Health Care Home, a primary care initiative.

Adri holds an executive Masters degree in Business Administration.

SPEAKERS AND WORKSHOP PRESENTERS

NICK LINTON

Nick Linton works for Fire and Emergency New Zealand (formally The New Zealand Fire Service). He has a special interest in the safety of disabled people in fire and emergencies, in particular, the needs of the Deaf and hard of hearing community. He is half Deaf due to an accident in college and has associated vestibular disturbance and tinnitus and so has lived experience of the difficulties faced by this community. He is also fluent in New Zealand Sign Language and holds university papers in disability. He has worked extensively with Deaf and hard of hearing communities and is a strong advocate for the community having specialized smoke alarm alerting devices to provide early warning of a fire starting.

Presentation: Fire Safety for the Deaf and hard of hearing

This presentation covers the basics of fire safety as well as shedding light on the types of technology available for Deaf and hard of hearing people in fire and emergencies.

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MICHAEL NEEFF

Michel graduated from The University of Auckland and completed his training in Otolaryngology, Head and Neck Surgery with The Royal Australasian College of Surgeons in 2005. He was awarded a fellowship at the Skull Base and Auditory Implant Unit in Manchester, UK for one year in 2006 where he was involved in skull base procedures including acoustic neuroma surgery, auditory implant surgery (cochlear implants (CI), brain stem implants (ABI), Bone Anchored Hearing Aids (BAHA)), oncological surgery involving the posterolateral skull base as well as otological and general ENT surgery.

In 2007 he spent time at the Cincinnati Children’s Hospital in Cincinnati, USA to further his skills in the management of paediatric ENT disorders and the paediatric airway.

Since his return to Auckland in 2007, he has appointments as an ENT consultant at Starship Children’s Hospital, Auckland City Hospital, and Green Lane Hospital. He has been the Clinical Director at Starship Children's Hospital since 2017.

He is involved in the management of general paediatric and adult ENT disorders with subspecialty emphasis on neurotology, skull base surgery, cochlear implant surgery, bone anchored hearing aids, and otological surgery.

Michel is a selector of the Training Education and Accreditation Committee (TEAC) which coordinates the surgical training of Otolaryngologists in New Zealand, and a past Secretary of the NZ Society of Otolaryngology, Head and Neck Surgery.

He is a Senior Lecturer at the Auckland Medical School. He is a Surgeon and Chairperson of the Northern Cochlear Implant Programme (NCIP).

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SUZANNE PURDY

Professor Suzanne Purdy is Head of School of Psychology at the University of Auckland and Principal Investigator in the University of Auckland Centre for Brain Research (CBR) and the Brain Research New Zealand Centre of Research Excellence. Her academic background is in psychology, audiology and speech science and she has research interests in communication disorders, auditory processing, hearing, cochlear implants, and neurological conditions. Current research activities include two population studies of hearing and auditory processing, and investigations of sensory function in adults with mild cognitive impairment, cognition and speech perception in people who use cochlear implants, diagnosis and treatment of auditory processing disorder, and language and hearing in children starting school in an area experiencing high levels of deprivation. She has many productive and enjoyable collaborations with speech-language therapists, paediatricians, audiologists, neuropsychologists, and other researchers and members of the community.

Presentation: Listening effort and speech perception in adults with cochlear implants: Can noise reduction help?

Listening effort has been defined as “refers to the mental exertion required to attend to and understand an auditory message”. Listening effort is high for people with cochlear implants, even when listening conditions are relatively easy. We have measured listening effort in a number of ways to determine how this links to speech perception and working memory in people with cochlear implants. Working memory is often measured by having people recall strings of numbers but can also be measured with more complex reading tasks. Results for people using the N6 or N7 cochlear implants indicate some benefit of noise reduction as well as links between speech perception and working memory. Factors influencing differences in performance on complex dual-task paradigms (listening and looking) across studies will be discussed.

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GRANT SEARCHFIELD

Associate Professor Grant D Searchfield has been an audiologist since 1994 and obtained his Doctorate in Audiology in 2004. He is the clinical director of the University of Auckland’s Hearing and Tinnitus Clinic, scientific director of Tinnitus Tunes a tinnitus treatment website, and deputy director of the Eisdell Moore Centre for hearing and balance research. Grant is a primary investigator in Auckland University’s Centre for Brain Research and Brain Research New Zealand, a national centre of research excellence. He is an associate editor for the International Journal of Audiology, Scientific Reports and Frontiers in Neuroscience and Psychology. Grant is well known internationally for his research investigating the use of sound and hearing aids for tinnitus management. In addition to his tinnitus research he is the lead investigator in a major multisite trial of hearing aids as a potential method to slow cognitive decline, funded by the Health Research Council of New Zealand.

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CAROLINE SELVARATNAM

PHD, Hon LLD

Caroline Selvaratnam is the Adult Cochlear Implant Programme Manager at The Hearing House. She has been working in the audiology field since 1997 and has been involved in cochlear implants since 2000. Caroline enjoys working with a wide variety of people and loves the challenge of improving the communication outcomes of hearing-impaired adults.

Presentation:

Supporting the hearing impaired/ cochlear implant client in the community: A discussion for health professionals.

For many health professionals, the severe to profound hearing loss population is an enigma because they don’t see many individuals with significant communication problems in their day to day practice. This may lead to late referrals or fractured support because of a lack of knowledge about how best to proceed. This discussion will try and give those working with this population more tools to support those who are waiting for an implant, those who have an implant or the clients who have yet to be referred.

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HOLLY TEAGLE

AuD

Holly FB Teagle, AuD is currently the Clinical Director of Audiology and Therapy at The Hearing House in Auckland, New Zealand, with a dual appointment as Associate Professor at the University Of Auckland School Of Population Health. Her 35 year career in Audiology has focused on patient care, clinical research and teaching related to cochlear implantation.

Presentation: International Consensus on Cochlear Implant Use in Adults

Hearing loss is one of the leading causes of disability worldwide. While hearing aids are effective for many adults with hearing loss, those who experience bilateral severe, profound, or moderate sloping to profound sensorineural hearing loss many not receive adequate benefit from hearing aids. In 2018-19, a group of international experts on cochlear implantation met to review evidence through a Delphi Consensus approach for the purpose of developing international agreement on clinical practices around cochlear implantation. The end result was the development of consensus statements relating to CI awareness, access, and candidacy and treatment pathways. Areas for further research where evidence gaps exist were also identified. This presentation shares the consensus findings and relates them to current practices in New Zealand.

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LEWIS WILLIAMS

Lewis grew up on Tāmaki Makarau’s Northshore. She recently returned to Aotearoa after many years of living in Canada and today lives in the Tauranga Moana. She is of Ngāi Te Rangi descent. Initially diagnosed with a progressive hearing loss 22 years ago, today Lewis lives with severe to profound hearing loss. Initially qualifying as a social worker and community developer, she went on to work in the public health and tertiary sectors. Her Ph.D. was in empowerment theory and focused on issues of identity, culture, and power. Today she is a Senior Research Fellow with Whakauae Research for Māori Health and Development and the Founding Director of the Alliance for Intergenerational Resilience. She loves hiking, meditation, yoga, drama, te reo Maori and spending time with friends and family.

Presentation: From me to you: Poetry and perspectives from a cochlear implant recipient

As a signatory to Convention on the Rights of People with Disabilities, Aotearoa New Zealand aims to be a “non-disabling society – a place where disabled people have an equal opportunity to achieve their goals and aspirations’’. Yet in many respects, current policy and practice is further disabling adults with severe to profound hearing loss through lack of access to timely cochlear implants. For people with SPHL, finding their place of power with the experience is challenging and multi-faceted. In this workshop, I shall draw on my own experience as both a late-deafened adult with SPHL waiting for a CI and public health professional to map the multi-faceted terrain of SPHL, and related personal and societal issues. I will cover a broad range of factors such as early childhood attachment and response to SPHL, self-identities, and issues of professional and systemic power. This will be followed by 3 reflective questions for group dialogue on the issues presented.

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KIM VON LANTHAN

Kim was Chief Analyst, Health at The Treasury with health budget responsibilities. He consults in relation to financial issues in the health sector and has completed assignments for Ministry of Health, Accident Compensation Corporation, Private Surgical Hospitals Association and Health Funds Association.

Presentation: As hearing issues pass from a disability to a medical model a number of funding challenges emerge. This presentation explores the funding challenges within the public funding context.

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SUE ARCHBOLD

PHD, Hon LLD

Keynote Address: Changing public health policy on hearing care: who does it and how?

Workshop: Non-specialist counselling skills- do we need them?

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ELLEN GILES

BA (hons). MSc.

Ellen has been a rehabilitation clinician with adult CI programmes since 1990. Initially she was with the Manchester cochlear implant programme, UK, and then moved to NZ in 1997 to be with the Northern CI programme in Auckland. She provides a range of services including CI MAPping, troubleshooting, and research but her main interest is aural rehabilitation with CI recipients and helping them achieve their hearing potential.

Ellen trained in the UK; she achieved a joint honours degree in Biology & Psychology followed by a Masters degree by research in clinical audiology at the University of Keele, Communication & Neuroscience dept. She went onto the City Literacy Centre for the Deaf in London to qualify in Hearing Therapy and teaching lipreading.

Workshop: Active Listening and Having Fun

Whilst traditional auditory training still has a place in the rehabilitation process we felt adults needed to have more fun! We have introduced adults to websites and audio streaming to enable them to do their own listening practise with a wide range of exercises and materials online (with their computers and mobiles).

In addition we will look at how listening practise can be incorporated into everyday activities; baking, shopping lists, recipes.

We want adults to enjoy their listening experience- many have used music and singing to make progress. Others have used board games they can play with family and friends and grandchildren.

The purpose of the workshop is to demonstrate listening activites that you can try out at home… oh yes, and be ready to sing too!! It’s very good for us.

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JONATHAN VANDERHOORN

Jonathan is a musician and composer who graduated from the University of Auckland in 2015. He has since been working in schools alongside children with physical and intellectual disabilities. He plays the piano, trumpet, electric and acoustic guitar, ukulele and has dabbled in the didgeridoo. He composes in a wide range of settings - electronic music for video games, traditional musical theater, and orchestral works - but between all of these lies a passion for making music and a belief that it is a fundamental human experience that can be enjoyed by anyone.

Workshop: The Language of Music

Experiencing music is, for cochlear implant users, often a difficult and frustrating task. For many it is a dense web of noise, hard to break down and digest. This workshop seeks to provide some of the knowledge and tools necessary to begin unraveling this web. Through practical group activity and discussion, this workshop will attempt to demystify the language of music, giving cochlear implant users a foothold into enjoying the experience of music again. We will be focusing on three of the most fundamental aspects of music: rhythm, pitch, and timbre (sound quality). Each of these elements will be discussed and explored through a communal music-making experience. The workshop does not require any musical knowledge or skill, but be warned! You may leave with some.

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JULIE LIGETI

Julie Ligeti is Global Manager Public Advocacy for Cochlear Ltd. Prior to joining Cochlear, Julie worked in the law and as a Chief of Staff and Senior Adviser to Australian State and Federal Government Ministers. Julie has extensive experience in policy development and public advocacy gained within the community, government and private sectors. Julie's career focus is social policy including aged and disability care, law and justice, public health and hearing care.

Julie is a member of the Board of Councillors of Monash University, Australia's largest University. She is Chair of the Victorian Responsible Gambling Foundation and was inaugural Chair of the Accident Compensation Conciliation Service Victoria. Julie also volunteers in the not-for-profit sector and is an Ambassador for the Human Rights Law Centre (Australia).

Presentation: Policy advocacy and empowering community voices- what role can consumers play?

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NEIL HESLOP

Southern Cochlear Implant Program General Manager

Neil Heslop is General Manager of the Southern Cochlear Implant Programme. An Audiologist by training, he worked from 2003 until 2011 as a clinician in the programme, for the most part with children but also with adult candidates and recipients. He has a background in public sector Audiology, with DHB experience in NZ as well as experience in the UK’s NHS system. He has a clinical interest is in the use of telemedicine for cochlear implant care. Prior to Audiology, he has worked as a computer programmer and in radio electronics, and has an under-graduate degree in speech-language therapy.

Presentation: Telemedicine in Cochlear Implant Care

While the number of cochlear implant patients continues to grow worldwide, health system funding to support these patients may not keep pace. Cochlear implant programmes struggle to maintain services for patients in a timely fashion.

New Zealand is particularly difficult as it is sparsely populated with difficult geography making travel times lengthy for often short appointments. Visiting clinics and collaboration with regional service providers may assist but can be equally costly.

Modern telecommunications networks provide an opportunity for care at distance. This may include anything from educational and teaching webinars, fixed remote MAPping, to home-based care.

This presentation discusses some applications of telemedicine in cochlear implant clinical care, its limits, and where the technology might be heading.

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DAVID WELCH

University of Auckland

Presentation: Perception of Treatment and Impact for People Receiving Hearing Implants
David Welch and Ashleigh Douglas

Cochlear implants and auditory brainstem implants may benefit people with hearing loss. This research employed followed six people from just before they received implants (three cochlear implants and three brainstem implants) to several months afterwards. We conducted three interviews with each person to gather information about their experiences of hearing loss, their preconceptions about their hearing implants, the process of learning to hear again after getting them, and their outcomes in terms of their lives. The findings supported the positive hearing and quality of life outcomes brought by hearing implants. Of particular importance was the long and recursive nature of rehabilitation: there is a journey to develop the skills to use the devices properly. This demonstrated the need for ongoing willingness to work on one’s hearing and the need for appropriate expectations, determination and support from both personal and professional networks to cope with this.

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CEDRIC RATIMA

Cochlear Implant User

My name is Cedric Ratima, I was born in Whakatane Bay Of Plenty but have spent most of my life in the far Northland town of Whangarei with my partner Beverley Fordham and our 5 adult children. I’ll be sharing my hearing loss story with you.

Presentation: Living in Darkness and Light