Professor WPR (Bill) Gibson, also known as ‘Prof”, passionately believed that cochlear implants were the best form of intervention for all deaf people and in particular children who were born deaf. Despite scepticism from many colleagues, he was instrumental in the establishment of a cochlear implant program in1984 that eventually became SCIC – Sydney Cochlear Implant Centre.

Since that time, under Professor Gibson’s direction SCIC has performed over 3000 cochlear implant surgeries and is now, not only one of the largest programs in the world, but

also regarded as a world leader in the provision of cochlear implant and related services.

After nearly thirty years and close to 2000 of his own cochlear implant surgeries Professor Gibson has decided to refocus his attention on the role of SCIC Director and from July will base his private practice at SCIC’s Gladesville Centre.

To facilitate this Professor Gibson has announced his retirement from SCIC’s public hospital activities with this role being assumed by the other highly skilled surgeons who form part of the SCIC team.

A Change of Direction for Prof

Professor WPR (Bill) Gibson

S C I C Newsletter: Gladesville, Newcastle, Canberra, Gosford, Lismore, Port Macquarie, Glenmore Park May 2012

Welcome

In this issue of Stay Tuned we celebrate one of the most important aspects of SCIC, our determination to take cochlear implant services where they are most needed.

A little understood fact is that SCIC does not receive Government funding for our Outreach activities, and is totally reliant on fundraising to cover the costs involved.

We are thankful that over the years many of our donors do recognise the need and are generous with their support.

Reading Aaron Neeves’ story in this addition highlights just how significant this service is for regional families if they are to obtain the best outcomes for their family members.

Aaron’s mother Amanda commented “As SCIC grew, they were able to offer an outreach service, this has been simply wonderful, it saved us travelling to Sydney for mapping and assessments every six months.”

Your donation is vital if SCIC is to continue to provide crucial cochlear implant services for regional recipients and their families and is very much appreciated by those who use them.

I hope you enjoy reading more about SCIC as we extend the Outreach program to the Northern Territory and Samoa as well as advances in SCIC research and other centre related activities.

Barbara Howard

Newcastle 710 Hunter Street NeWCASTLe WeST NSW T 02 4926 8100Canberra 10 Rudd Street CANBeRRA NSW T 02 6248 6492

Central Coast 46 A Mann Street GOSfORD NSW T 02 4324 2110Lismore Suite 10A Conway Plaza, 21 Conway Street LISMORe NSW T 02 6622 5593

Port Macquarie Suite 6, L1 Oxley House, 133-137 Gordon Street PORT MACquARIe NSW T 02 9844 6800Glenmore Park 5/6 floribunda Avenue, Glenmore Park NSW T 02 9844 6800

S C I C PO Box 188 GLADeSVILLe NSW 1675Bldg 39 Old Gladesville Hospital via Punt Road GLADeSVILLe

T 02 9844 6800 F 02 9844 6811 E scicadmin@scic.nsw.gov.au www.scic.org.au

Prof and Angus Johnston (1989)

continued page 2

SCIC’s Canberra staff Janet Kenyon and Anne-Marie Crowe braved swollen rivers and closed roads to provide Outreach services to our Wagga clients a week after the March floods had swept through the district.

One of the recipients seen during their visit was 25 year old Aaron Neeves. Aaron had been one of Prof Gibson’s first paediatric cases after he lost his hearing from meningitis when he was three years old. His bilateral profound hearing loss was diagnosed soon after.

Hearing aids helped only slightly so his parents began their search for anything and anyone who may be able to help Aaron. During this time they became aware of Professor Bill Gibson and his pioneering work with cochlear implants and young children.

This began their many trips from Wagga to Sydney with their first trip being to SCIC’s Chatswood centre for an extensive assessment regime.

Once Aaron was accepted onto the program, his family had to travel to Sydney again for surgery in December and switch-on in January.

And for 3 days of every week for the next 12 months Aaron’s mother had to take him to the Chatswood Centre for intensive habitation, leaving behind her husband to run his business and care for two small girls 7 and 4, while trying to maintain some sort of normal family life.

After that first year it was a twice yearly visit to SCIC in Sydney for mapping.

As SCIC grew, they were able to offer an outreach service that Aaron’s parents described as ‘simply wonderful’. SCIC use the local Australian Hearing rooms and every six months travel to Wagga for visits saving them trips to Sydney for mapping and assessments.

Since finishing school Aaron has worked as a machinist with a manufacturing company. In January he married Klara and they are expecting their first child later in the year.

It is unlikely that Aaron & Klara’s baby will be born deaf but even so, if they needed to access cochlear implant services as Aaron did as a child, SCIC will ensure that Aaron and his family would be spared the expense and disruption that his parents had to experience.

While Prof will be missed in the public domain, he will continue to do cochlear implant surgery as part of his private practice as well as be available to provide guidance and counsel using his vast knowledge and experience. New surgeons joining SCIC will benefit greatly from having Prof available as a mentor.

It is certain that Prof’s friendly face and happy demeanor will be missed around the operating theatres in Sydney’s public hospitals however we are certainly looking forward to having him spend more time at Gladesville - at least we’ll know where he, his glasses and phone are and make sure he’s behaving!!

Above: Aaron and Klara on their wedding day. Top Right: Janet Kenyon from SCIC Canberra provides Aaron Neeves with mapping services on one of her regular Outreach trips to Wagga. Below Right: Aaron and his mother Amanda Neeves had to travel to Sydney twice a year to access cochlear implant services.

A Change of Direction for Prof continued... A Change for the Better Since Aaron

Joined The SCIC Program.

After nearly thirty years and close to 2000 of his own

cochlear implant surgeries Professor Gibson has decided

to refocus his attention on the role

of SCIC Director.

SCIC cochlear implant recipient Samantha Fullarton has been crowned Miss Deaf Australia 2012 with fellow recipient Lauren Patrick named as runner up.

The girls were put through several interview rounds including a personal presentations before the awards were announced in front of over 300 people at The Deaf Club Sydney function at Parramatta RSL on the 3rd of february.

As part of her prize, Samantha will represent Australia at the Miss Deaf World Championships being help in Prague, Czechoslovakia in early July. Good luck Samantha!

Congratulations

from our newly established Lismore Centre, to our expanded Western Sydney Centre, SCIC’s services are in demand. Our dedicated staff are seeing an increasing numbers of children and adults at more than twenty sites across NSW and the ACT.

As further confirmation of our international reputation and our widening area of influence, the SCIC charity has provided cochlear implants for four children from Samoa and closer to home has established a presence in Darwin.

This growth has seen the need for a number of highly skilled professionals to be added to our staff ensuring we continue to provide timely and effective services to those children and adults who come to us for help.

The recent additional funding for paediatric cochlear implants was a welcome and generous gesture from the NSW Health Minister, Jillian Skinner and we anticipate a record number of publicly funded children receiving cochlear implants this year. With further negotiations under way, we are hoping that this will enable us to provide surgery services for children in regional areas as well.

SCIC’s clinical services continue to be world renowned however research is also an

important part of our work and we are keen to increase our profile in this area. SCIC staff recently travelled to the uSA to present research papers which received accolades from the international audience.

In an exciting further development an SCIC Research unit will be established within the new Australian Hearing Hub at Macquarie university.

While a number of new cochlear implant programs have been established and see their service as a lucrative enterprise, SCIC is determined to stay true to its philosophy of providing world class services at no cost to families and individuals seeking our help.

We are proud that the program remains a free service however rapid growth brings its own set of challenges.

With no government funding for infrastructure, SCIC is dependent on support from the wider community to ensure we can continue to meet the increasing demand. I encourage you all to consider participating in our regular giving program or by making a donation to SCIC. Any donation to SCIC is of course tax deductible.

Rob McLeod General Manager

from the Manager’s Desk

SCIC staff member, Kirsty Gardner-Berry has a great interest in Auditory Neuropathy Spectrum Disorder (ANSD) that prompted her to undertake a Doctor of Philosophy (Ph.D.) in the area in an effort to understand it more.

Kirsty’s research involved looking at measures from the cochlea, auditory nerve and cortex of babies and children with ANSD. The intention was to see if a way could be found to predict which babies were likely to hear well enough with hearing aids and which babies may benefit more from a cochlear implant.

Her thesis was accepted and in December 2011 she was awarded a Ph.D. at the university of Sydney by the Governor of NSW, Her excellency Professor Marie Bashir – a very proud moment for Kirsty and her family!

Samantha fullarton, centre and Lauren Patrick on left

edward is deaf, but that shouldn’t stop him reaching his potential

Your Bequest to SCIC gives children like edward a future. What a wonderful Legacy to know that you have given deaf kids the chance to attend regular school, go on to gain meaningful employment and become contributing members of the community, just like yourself.

To obtain further information on how to leave a Bequest to SCIC please contact the Development Manager: T (02) 9844 6800 F (02) 9844 6811 E scicadmin@scic.org.au www.scic.org.au

2012 sees SCIC continue to consolidate its position as Australia’s and one of the world’s best and most comprehensive cochlear implant programs.

“I thought I had been shot” recalled Kerry Alderton, “but it was the first time I had heard thunder so clearly!” Kerry was recounting his experience sitting out in his backyard in Darwin, after returning from Sydney where he had his cochlear implant surgery and switch on.

Kerry had not heard in his left ear for over 40 years. expectations of understanding speech had been set low after not hearing for such a long time. Six months after his switch on, Kerry has improved from 0% to 82% when tested on sentences. He has worked hard on his auditory training using audio books and going to movies amongst other situations where he has to use his hearing.

SCIC clinicians Kylie Chisholm and Colleen Psarros recently travelled to Darwin to provide mapping and habilitation services for local residents. While there they also conducted workshops with local professionals and some recipients and their families. It was a very successful evening where Kerry and other recipients shared their experiences. Kerry is one of the recipients who has made the trip to Sydney

to have their cochlear implant surgery, and following a very concentrated audiological and auditory training follow up, has returned to Darwin, hearing through his cochlear implant.

Several parents attended the workshop and were able to reflect on the upheaval required to relocate to Sydney for the period of surgery and soon after the implant. All are extremely happy with their respective children’s ultimate outcomes. Jesse and Logan have just started their first year at school, and Rafael is happily learning to speak at the age of 10 years, with the strong support from the NT Dept of education teachers of the deaf.

While the numbers of people from the Northern Territory receiving cochlear implants remain quite small, SCIC will continue to provide services locally by using remote technology and through regular Outreach visits to Darwin.

It is anticipated that at some stage, implant surgeries will take place in Darwin, further reducing the upheaval in the lives of those wanting a cochlear implant.

Will you help SCIC by committing to make a Monthly Donation?Do you or your family use one of SCIC’s many cochlear implant services?

•Mappingandhabilitationservicesataregionalcentre

•AttendOutreachinterstate orinregionalNSW

•Obtainloanerspeech processors by mail or courier

•Haveneededanemergencymap

•Attendedaninformationsession

•BenefitedfromSCICresearch

Then you know how crucial the services provided by SCIC are in keeping yourself or your family member hearing.

You might be surprised to know that SCIC does not receive funding to maintain any of these services.

In fact they are funded entirely by people like you!

SCIC needs predictable and secure funding so that it is able to continuing to deliver our mission of helping deaf people hear.

Your commitment to make a monthly donation (regardless of the amount) will give SCIC that certainty.

To arrange to make your direct and effective personal contribution please fill in the monthly donation section on page 8 of this Newsletter and return to:

SCIC Development OfficeReply Paid 85829, Gladesville 1675 Development Manager:02 9844 6805scicadmin@scic.org.au

SCIC recipients living in Darwin no longer Remote from Services

News from CanberraRita Sutherland finished with us in early March to enable her to build her budding private Speech Pathology practice and we have been joined by audiologist Bryan Read who will be assisting Janet Kenyon with intra-operative testing.

Dr Tim Makeham has joined the surgical team and on the Admin front, we recently welcomed Carol Minney. One of Carol’s first responsibilities was to man an information stall at a Seniors Week expo at the Hellenic Club.

Kylie, Logan, Rafael, Jessie and Colleen watch the Darwin sunset while enjoying a picnic after their sessions.

While in NT, SCIC helps in determining cochlear implant suitability of children.

This year’s City2Surf will be held on Sunday 12 August.

Registrations officially open in May but you can jump the queue by registering as an SCIC Gold Charity Entry.

SCIC has secured 10 positions for our supporters in this highly prized section.

This means you start right behind the red group in the first wave of runners from Park Street and are able to wear the unique gold bib.

Remember there are only 10 spots available so don’t miss out – contact the Development Office on 02 9844 6805 to find out now you can obtain one of these prized spots!

Jump the queue with an SCIC Gold entry

Your Donations Allow SCIC to expand in Port MacquarieInitially, the SCIC Port Macquarie centre was a small room at Port Macquarie Primary School with Speech Pathologist Natalie Opitz, seeing children from the mid north coast for therapy

Soon after, the centre moved to offices in Oxley House, but with the provision of remote mapping for both children and adults now available, even larger premises are now required.

Remote mapping has been a welcomed addition for clients as it not only establishes optimum programs but also reduces travel times for many who would otherwise have to travel to Newcastle or Sydney.

Sarah Stallworthy mother of two year old recipient Josie, is extremely thankful that SCIC had the funds to establish the centre. “It is fantastic having therapy so close to home. It only takes us an hour to get to Port Macquarie as opposed to 2.5hrs to Newcastle.”

With no Government funding available to cover the cost of establishing such centres, SCIC is reliant on donations to fund these new initiative. Highlighting the contribution donor support makes to the lives of local recipients, Sarah went on to say “This is a huge advantage to Josie because she isn’t spending all day in a car. It also helps us as a family, Josie being the youngest of three children, it is great to be able to be at home in time for the eldest two to finish school and Kindy”.

The enlargement of facilities at Port Macquarie can only be made possible through generous contributions. Donations towards this great service for recipients on the Mid North Coast would be appreciated by SCIC.

The Entertainment Book provides you with hundreds of opportunities to try many of the finest restaurants, attractions, activities, theatre, cinema, retail services, travel and accommodation.

Books available for:

•Canberra•Newcastle-CentralCoast-Hunter•NorthernNSW-GoldCoast•Sydney•SydneyGreaterWest•SydneyNorth•Wollongong-SouthCoast

To make finding that deal easier download your fee App that allows you to search for and map participating businesses in a selected area.

Purchase your copy of the latest entertainment Book by using the accompanying form and return to:

SCIC Development OfficeReply Paid 85829Gladesville NSW 1675

You can collect your copy from any SCIC Centre.

entertainment Book. Have fun - Help SCIC

Congratulations and thanks to Heidi Waddell, for representing SCIC in the recent Canberra Running Festival and raising $575 for the Canberra centre.

Josie Stallworthy was first “Switched on” in May 2011. Since that time she has made improvements in her social skills and had her second cochlear implant in December 2011.

Team SCIC in the 2011 city2surf

News from Newcastle

Congratulation Sir Jack Brabham, SCIC cochlear implant recipient, on your election to the ranks of Australia’s Living Treasures

95 year old recipient Norm Heldon gave a wonderful rendition of The Man from Snowy River at the final Seminar Series “Where are they now?” in late 2011.

Each year becomes busier than the last in Newcastle with our local surgeons performing over 160 cochlear implant surgeries.

As well as the very busy centre in Hunter Street, staff continue to provide Outreach services to Port Macquarie, Taree, Tamworth and have added Scone to the list.

To assist us in providing these services we welcome our new Audiologist Jacinda Burgess who brings a wealth of knowledge

and expertise from her previous positions in Perth, Denmark, england and America.

Staff at SCIC Newcastle are looking forward to receiving new equipment for testing Cortical Auditory evoked Potentials. This will be of great help particularly for testing babies and young children with multiple disabilities.

SCIC Newcastle had a great turn out for their “Where are They Now?” Seminar in December 2011.

Carol Amos manned the SCIC stall the CICADA Hearing expo at Parramatta

Recipient Graham Purnell from Port Macquarie has come up with a very novel idea for an acoustic shield that he uses while doing auditory training homework with his wife Colleen.

“One of the most interesting seminars I have attended...” In March, SCIC Lismore hosted a cochlear implant seminar for local health professionals working with hearing impaired children and adults.

The thirty-five delegates attending included medical practitioners, audiologists, audiometrists, teachers of the deaf and community health nurses as well as the local SWISH co-ordinator. We were thrilled that the manager of Brisbane’s Mater Hospital cochlear implant program also travelled down.

excellent presentations were given by fran Crombie (Cochlear Ltd) highlighting the significant unmet need to find solutions for people with hearing loss and explained the difference between hearing aids and cochlear implants; eleanor McKendrick (SCIC Senior Audiologist) outlined candidacy guidelines and contraindications as well as explaining potential cochlear implant outcomes and influencing factors; Jacqui Wilson (SCIC Lismore Manager and Audiologist) explained the process and funding to obtain a cochlear

implant in Northern NSW; Associate Professor Melville Da Cruz SCIC surgeon outlined the cochlear implant surgical process, providing valuable tips for GPs regarding care for patients post surgery and what symptoms are likely to be caused by implantation and when to refer.

Two SCIC recipients Beryl Davis and 9 year old Ruby Loosemore also attended giving presentations and providing delegates with the opportunity to ask questions about their experience.

feedback from delegates was very positive - “the most interesting seminar I have attended” and “Melville Da Cruz was the most dynamic speaker I have heard on the subject of cochlear implant”

SCIC would like to thank Cochlear Ltd for their generosity in supporting and sponsoring the seminar. The event was a great success overall and the referrals have already started to roll in.

Around the Centres

Important information from the troubleshooting gals: Lyn & Sue SCIC Presents in

the uSA

In March, Kirsty Gardiner–Berry travelled to the USA to represent SCIC at the Auditory Neuropathy Spectrum Disorder (ANSD) Conference.

One of the key messages from the conference was the importance of working as a multi-disciplinary team - audiologists, speech and language therapists, early intervention agencies, teachers, paediatricians, neurologists and cochlear implant surgeons - when assessing ANSD.

Of even greater importance is the role parents play in the evaluation. As ANSD can result in a fluctuating hearing loss and unusual auditory behaviour, parents are in a prime position to monitor and report what they see from one day to the next.

Kirsty presented on the extensive work SCIC has done in the area of electrophysiology, cochlear implantation, and speech and language outcomes in our population. With over 150 cochlear implant recipients having ANSD, the multi-disciplinary team at SCIC has wide experience, making them one of the world leaders in this area.

feedback from Kirsty’s presentation was very positive, with attendees expressing gratitude for her coming to share this knowledge with them.

Spare parts

It’s a good idea to keep spare parts at home so you can make sure your processor works when you need it most.

SCIC strongly encourages clients who are eligible* for Australian Hearing to contact the AH Cochlear Implant Call Centre for all replacement parts as these parts are now only supplied from the AH Head Office.

You should make sure that you know which type of processor you use and the parts you require.

SCIC will assist if you are unsure of what service or parts you require. SCIC can also provide you with loaner devices when necessary and will handle the return and replacement of faulty parts which are still under warranty.

SCIC can no longer directly supply spare parts for your processor, except in emergency situations however the one colour the part are available in is BeIGe . Please note that this service is only available to clients who are Australian Hearing eligible.*

Batteries and drying crystals for your dry-aid kit are still available from your local AH centre.

To clarify manufacturers and products:

•COCHLEARistheAustraliancompanythat makes the 3G, freedom and Nucleus 5 implant and processors and all the parts to go with it.

•MEDEListheAustrianmanufactureroftheMAeSTRO cochlear implant system and OPuS 2 processor and parts.

AH Cochlear Implant Call Centre details:

P 1800 131 339 E cisupport@hearing.com.au F (02) 9419 8397 NRS: 133677 then 1800 131 339 * eligible AH clients include children and young adults up until their 26th birthday

for those not eligible for AH services, Cochlear Ltd have created the Cochlear Care Service Plan to assist in managing the cost of service and repairs. Visit www.cochlear.com/au/serviceplans for more details or call 1800 620 929.

Keep it dry

fReSH DRYING CRYSTALS are one of the most important tips for keeping your processor working well. The DRYBRIK II is especially recommended for very sweaty people or very humid environments.

Putting your processor in the Dry&Store each night will keep it working well.

Remotelyinteresting?

If you have a Nucleus 5, CP810 processor, please bring your remote assistant to all appointments- even if you do not use it much, it is good for troubleshooting when there is a problem with your device. You may also need to ask more questions about your remote assistant at subsequent appointments and the audiologist can help you.

In October 2011, SCIC surgeon’s Prof Bill Gibson & A/Prof Catherine Birman, and audiologists Colleen Psarros, Janet Kenyon and Maree McTaggert represented SCIC at the Asia Pacific Symposium of Cochlear Implants (APSCI) Conference in Dageau Korea.

SCIC Papers covered topics such as:

•SpeechProductioninYoungCongenitalAdults following Cochlear Implantation

•CMVandCochlearImplants-LongitudinalOutcomes

•BilaterallyImplantedChildren–TheImportance of the 1st Year

•RecordingtheElectrocochleogramDuringInsertion of Various Cochlear Implant electrodes

These papers were informative and well received, reinforcing why SCIC has established itself as one of the most well respected program worldwide. Not only with regard to the professional and life-long care it provides its clients but also for the commitment to ongoing research that is vital for the benefit of both current and future recipients.

Well done team!

SCIC Presents at APSCI

OPTION1 Here is my/our MONTHLY gift of:

$15 $25 $50 $100

Other $ (minimum $10)(An authorisation form for regular giving will be sent to you)

OPTION2 Here is my/our SINGLE gift of:

$25 $50 $100 $250

Other $

My/our payment details are:

Enclosed is a cheque/money order for $ made payable to SCIC

I /we wish to pay by Direct Debit

Account name:

BSB: Account No:

Please debit my/our Amex MasterCard Visa card,

Name on Card: Signature:

Number: / / / Expiry Date: /

CCV No: (last 3/4 digits of security number front or back of card)

Please send receipt to:

Mr Mrs Ms Miss Dr

Address:

Phone: email:

Donations can be made online at www.scic.org.auReturn to: SCIC Fundraising Reply Paid 85829 Gladesville NSW 1675 P: 02 9844 6800 F: 02 9844 6811 E: scicadmin@scic.org.au www.scic.org.au

Please send more information about SCIC

I/we would prefer not to be acknowledged publicly for my/our support

Please send information on remembering SCIC in my/our Will

MAY 2012Donations to SCIC will be receipted through the University of SydneyTaxation Deductibility: All gifts over $2.00 are tax deductible under item 2.1.1 of the Table 30-25 of the Income Assessment Act 1997.

Last November SCIC (Gladesville) ran its very first music workshop for pre-schoolers who use cochlear implants.

SCIC paediatric clinicians Andrea Gibbons and Jane Brew got to channel their ‘inner Play School host’ and led a group of 3-5 year olds and their parents through some great musical activities.

The aim was to practically apply the current recommendations concerning how to get the most out of listening to music through a cochlear implant. Music for this age group is a natural and fun tool for boosting listening, speech and language skills. Basic music skills such as following along with different rhythms and moving differently to varied styles of music were explored – as well as plenty of sing-alongs and dancing!

Jane and Andrea explained briefly to parents how music can be used to help achieve goals in areas such as cognition, motor skills, social skills, auditory development, and sensory integration. The kids, meanwhile, got hands on with several different musical instruments. We even had craft time where the children (and grown-ups!) got to make their own percussion instruments to take home.

The feedback from participating families was overwhelmingly positive and this is something we will do again in the future with the intention to run music workshops for kids and adults of different ages. Keep an eye out for future notices of upcoming workshops at SCIC!

JaneBrew:SCICAudiologist

Donations can be made online at www.scic.org.au

Play School Comes to Gladesville