CELEBRATING INTERNATIONAL CI DAY AND CIICA’S THIRD BIRTHDAY

United by a passion to hear…. this year’s message.

EURO-CIU began International CI Day in 2009 to commemorate the first CI on February 25, 1957 in France. Since 2009, this day has been celebrated all over the world, sponsored by EURO-CIU.

Throughout Europe there are more than 500,000 people who have received cochlear implants, 60% are adults and 40% are minors, at the time of implantation. Globally about one million people have received cochlear implants.

Here is the press release for you to use from EUROCIU ready for 25 February:

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CIICA AT THE WORLD HEARING FORUM, WHO, GENEVA

CIICA is delighted to be a member of the World Hearing Forum and to be able to attend the second World Hearing Forum meeting and the Stakeholders meeting. A busy three days in Geneva at WHO but it was great to meet up with all the inspiring people from across the globe who are moving on advocacy for Ear and Hearing. We all said a huge thank you to the first Steering Committee who have done an amazing job, especially in the Pandemic, with so much achieved.

Ruth Warick, with Peter Thorne, and Sue Archbold, with Moses Sarwadda, lead the two new work streams for the new Steering Committee and we explored how we can take these ahead, over the next few years.

Sue Archbold, Leo De Raeve, Brian Lamb, Ruth Warick, Teresa Amat, and Paige Stringer from CIICA were there and it was good to be able to spread the work of CIICA and to learn from others. Brian Lamb is seen arguing for adult hearing screening at the Round Table discussion.

World Hearing Day is on 3 March each year, and in 2024 the theme will be Changing Mindsets: Let’s make Ear and Hearing Care a Reality for All. New resources will soon be available to share – and for planning your exciting activities.

WORLD HEARING DAY 3 MARCH 2024

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Report from our Global consultation with adult CI users: CI SERVICES MATTER

We are delighted to share the report from our global survey of adults with CI. Download the full report here and download the Briefing here to share.

The First Global Survey of deaf and hard of hearing adults using cochlear Implants finds very high satisfaction rates and highlights the need for lifelong services to ensure lifelong communication

The first ever global survey of deaf and hard of hearing adults with cochlear implants (CI) reveals that 96% expressed overall satisfaction with their implants with the same number being satisfied with the services they received.

Profoundly deaf users found that the implants transformed their abilities to hear and communicate in everyday life. As one user commented: “Going back to listening is priceless – my life has been completely changed for the better”.

However, the survey also revealed that users often struggled to get appropriate support and rehabilitation after surgery as they learned to use their implant, with 27% receiving no rehabilitation support and 32% feeling they did not have enough support. As another respondent said; “It would have been nice to have some support. I had no rehabilitation – I taught myself everything.”

These CI users were reliant on their CI for everyday communication and required lifelong technical support for the external parts of the device: “ I need services so that my CI will work and be supported right up to the day I die”.

Ongoing funding was also a major issue: 54% had to pay for important accessories and 26% did not have access to replacement processors, essential for the functioning of the Implant. A further 36% had to pay for repairs themselves.

Ongoing funding for the lifelong services is required: “We wish the high prices for our CIs would come down, it is impossible to get new accessories, new processors, etc”

The lack of ongoing services placed restrictions on users benefiting fully from cochlear implantation and their leading independent and productive lives. Lack of continuing investment in CI services and support also undermines the potential savings to health and social care systems from cochlear implantation.

We need significant changes in the way CI services are provided by health systems to ensure that these deaf and hard of hearing adults can retain their independence and that health and social care systems save on the increased burdens that would otherwise result. These changes include:

  • Rehabilitation to be available from the beginning as part of the core provision of implant services.
  • Quick and ready access to technology support when required, including spare parts such as processors, cables and coils, regular processor upgrades.
  • Person-centred services, with access to appropriate peer group support and counselling services
  • Funding to ensure sustainability of services and access to CI services throughout life.

Chair of CIICA Leo De Raeve said; “This survey is crucial in giving us a picture of how cochlear Implants are valued by users and the profound difference they are making to their lives.  CIs provide access to communication and society while saving health and social care services money. If we are to make the most of this amazing development in global hearing health, we need also to ensure that the 1 million users of CI are fully supported in the long term and it is not only those with deep pockets who can afford to have this life enhancing support”.

A CI user summed up the impact of her implants:

“No implant: no sound, no family life, no friends, no job (I am a nurse), no birds, no cat’s purr, no wind in my ears, no sound of waves, no children’s laughter…. Implants= life.”

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Cochlear Implants and Deafness: A Global Case Study to increase policy awareness and action on an under-resourced health issue.

We are delighted to share with you that a study of the development of CIICA (Cochlear Implant International Community of Action) as an international health network has been published by the International Journal of Audiology (IJA) at https://www.tandfonline.com/doi/full/10.1080/14992027.2023.2231634(Paywall). The paper places the development of CIICA in the context of other health networks and provides some lessons to be learned in how to establish health networks. It also reviews the research with users of CI and other stakeholders which led to CIICA’s establishment, develops some general learning about best practices in advocacy and provides evidence of the early impact of CIICA as a health network.

Many of you have taken part in either the research or our activities and we at CIICA are really grateful for your support, without which the establishment of this growing network in over 60 countries would not have taken place.

The IJA is an internationally respected journal and this will help spread the news of CIICA’s work and impact even more widely. 

We would of course like you to promote the paper via the public (paywall) link. With many thanks again for all your support for CIICA, and we look forward to our future developments

Patient advocates in this field are the best conveyors of messages around the impact and severity of not addressing hearing loss and the benefits of taking action. From a public health perspective messaging about access to communication and the right to be able to hear resonates well within a human rights framework and offers an important basis for network development and building coalitions between groups with different circumstances.

Lamb, B, Visiting Professor, University of Derby, UK (Corresponding Author).  brian.publicaffairs@gmail.com

Archbold S, CIICA, UK. sue.archbold@outlook.com

Zheng Yen Ng, School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia. zhengyen.ng@uq.net.au

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Quality standards for Rehabilitation in Children with CI

Leo De Raeve was one of the leading authors of a recent published article on “Quality Standard for Rehabilitation of Young Deaf Children Receiving Cochlear Implants”.

It is one of the outcomes of the European KA202 Erasmus+ project ‘VOICE’, Ref. No.: 2020-1-RO01-KA202-080059.
The article has been published recently in ‘Medicina’ as part of a Special Issue on ‘Current Trends in Otorhinolaryngology and Head and Neck Pathology’ and is available online:
Website: https://lnkd.in/djBSDVe4
PDF Version: https://lnkd.in/dVyJcxbD

You can also download the Quality Standards for rehabilitation of young deaf children receiving CI’s from the project website:https://lnkd.in/dBuri3qA . At this website you can also download a handbook for therapists, you can follow an e-training course on rehab and there is a lot of information available for parents.

It is essential that we think about the rehabilitation needs of young deaf children with CI.  You can also download the CIICA resource about Deaf Children with CI. 01027_CIICA CHILDRENS BRIEFING_4PP

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LAUNCH OF THE ADULT LIVING GUIDELINES!

Download CIICA’s summary of the Living Guidelines and use them for your advocacy activities.

Less than 1 in 10 of those who are deaf and could benefit from a cochlear implant (CI) have access globally. CIICA was delighted that our Chair Leo De Raeve was Co-Chair of The Task Force and to provide the CI user and family voice to the Living Guidelines Project through our Conversations. The project has developed evidence based living practice guidelines that can be adapted and adopted in country, in order to optimise the lifelong care for adults eligible for CI. These guidelines have been painstakingly developed through a systematic review by a dedicated team of researchers, audiologists, clinicians, and cochlear implant users, bridging the gaps between cutting-edge science, real-world application, and the lived experiences of CI users.

It is hoped the Living Guidelines for adult cochlear implantation will help at addressing the needs of adults experiencing hearing loss and provide a comprehensive roadmap towards cochlear implantation. Download the full Recommendations here – PDF

The Recommendations and Good Practice Statements

  • Hearing, Screening and Assessment
  • Referral (for hearing healthcare evaluation/management)
  • Specialist Evaluation
  • Surgery
  • Rehabilitation
  • Patient Outcomes and Measures

You can find more about the process of development and the complete Recommendations at https://adulthearing.com/standards-of-care/

Lee Schoushkoff, CEO of the Pindrop Foundation says, “As we continue championing hearing restoration advancements, the Living Guidelines for Adult Cochlear Implantation will be a vital resource in helping to address the crucial and significant unmet need in adults who are potential candidates for cochlear implants. We hope the Living Guidelines will pave the way for better knowledge dissemination, informed decision-making, and streamlined implantation procedures, ultimately promoting healthier, more fulfilling lives for adults experiencing hearing loss.”

Leo De Raeve, Chair of the Cochlear Implant International Community of Action (CIICA) and Co-Chair of The Task Force says, “The Living Guidelines are essential in advocacy work for cochlear implants in adults. They were developed through a systematic literature review and the involvement of users and families through CIICA. The Living Guidelines are essential to increase awareness, access, provision, outcomes, and lifelong aftercare and can be seen as a guide for advocacy to improve the experience and usefulness of cochlear implants for adults. I was delighted for CIICA to be involved in the project  and look forward to using them globally to change CI services.”

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Young deaf people with CI meet up in London to share advocacy stories

The Malala Foundation and Cochlear Foundation brought together five young people with CI from across the globe to London to  share their advocacy stories and inspire each other to further action. These young people represented 163 others who had responded to Achieve Anything programme and are examples of the first group of young deaf people growing up with CI. They were inspired by meeting Malala herself and Shelly Chadha of WHO who dialled in from Geneva provided further inspiration. 

Leo De Raeve, Chair of CIICA: This group of inspiring young deaf people demonstrates what can be achieved with early intervention, education, and the right, cost-effective, support.

Mahrukh Zaidi, a young doctor from India:  This early detection and subsequent support I received helped me thrive at school, providing the opportunity to study medicine.

Qais Khan then led discussion to begin a CIICA consultation about what these young people need to secure their future to be independent and succeed. More to come!

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WORLD HEARING DAY 3 MARCH!

EAR AND HEARING CARE FOR ALL:  LET’S MAKE IT A REALITY 
Many resources to help you. https://www.who.int/campaigns/world-hearing-day/2023

#worldhearingday #hearingcare

World Hearing Day 2023 highlights the importance of integrating ear and hearing care within primary care, as an essential component of universal health coverage

Key messages

  • Ear and hearing problems are among the most common problems encountered in the community.
  • Over 60% of these can be identified and addressed at the primary level of care.
  • Integration of ear and hearing care into primary care services is possible through training and capacity building at this level.
  • Such integration will benefit people and help countries move towards the goal of universal health coverage.

On this day, WHO launched a new training manual – Primary ear and hearing care training manual. The manual will be accompanied with trainer’s handbook and other community resources and needs to be shared widely in primary care services. Down load at https://www.who.int/health-topics/hearing-loss#tab=tab_1

Launch of the World Hearing Forum website

Ahead of World Hearing Day on 3 March, the World Hearing Forum launched a website under the banner ‘Ear and hearing care for all!’. Created by the Forum’s ‘Changemakers group’, the site contains powerful stories of high-profile supporters and everyday “Changemakers” – people from around the world living with hearing loss. We hope their stories will help generate awareness while driving action on hearing loss. Collectively, our voices are stronger. We invite you to visit the website, read the stories and share with others.

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Celebrating INTERNATIONAL CI DAY and CIICA’s Second Birthday!

25 February is International CI Day and CIICA’s Second birthday!

EURO-CIU began International CI Day in 2009 to commemorate the first CI on February 25, 1957 in France. Since 2009, this day has been celebrated all over the world, sponsored by EURO-CIU. Throughout Europe there are more than 500,000 people who have received cochlear implants, 60% are adults and 40% are minors, at the time of implantation. 

Now February 25 was also CIICA’s birthday and CIICA’s network is celebrating CI round the globe!

CIICA celebrated with their CIICA LIVE event on 23 February: Delivering Person and Family Centered Care in CI Services. Members from across the globe discussed this vital and neglected topic. Go to https://ciicanet.org/events/ciica-live-delivering-person-and-family-centred-ci-services/ and see the pdfs of the presentations – and the videos with captioning up soon!

A cake for all of us from Georgia!

EURO-CIU have chosen the theme for this year:

Proud to be me. Hear me now.

Members of EURO-CIU made videos to share on this theme – see some of the videos here with great messages:

Moving to Australia: CICADA hosting celebratory picnics!

We in Queensland Australia are celebrating with a picnic at Bribie Island, a day to enjoy chatting and enjoying the company of those that have had the cochlear implant  journey, a special day. Other venues include Sydney Harbour…. we look forward to sharing the photos! CICADA Queensland www.cicadaqld.org

More details about the event

and to PINDROP, New Zealand

The Pindrop Foundation is proud to honour some of the exceptional individuals in the cochlear implant community in Aotearoa NZ this International CI Day. These individuals have been unwavering in their efforts to advocate for those in need of this life-changing technology and have brought hope to many. Join us as we celebrate their achievements and contributions to the community https://www.pindrop.org.nz/community/ci-day-2023/

and to Latin America

From Patricia Faletty: “On February 25 we celebrate International CI DAY and also we celebrate CIICA anniversary with all Advocates and Cochlear Implant communities in Latino America. As a Founder member I’m pround of this initiative and share with all you after the 25 some pics for CI recipients that are proud and happy and Toast wishing CIICA A GREAT Anniversary.”

and in Ecuador celebrations too:

Campaign for Ecuador
and in Spanish for Argentina Celebrations!

and to Czech Republic

Suki are working  on a campaign “1+1 is more than 2” about binaural implantation with ENT doctors. There will be several radio and television interviews (between 25.2. – 3.3), leaflets with personal stories of bilaterally implanted adults, press release, and finally, an event (March 3) called “SUKI děkuje” (SUKI thanks to…) where we will award three personalities that supported significantly the wellbeing of CI users. The logo reads Hey can you hear me?

and to Austria

Tobias Fischer tells us that The Austrian group, ÖCIG, are planning an open day in the premises of the medical self-help centre in Vienna. We have received information from the CI manufacturers and our members will be available to answer any questions. Tobias Fischer also has a great lecture at  https://earbook.online/pora/ru/en/presentation/oecig/. for the Lehnhardt Foundation. He was the first child to have an implant at the Hannover programme. 

and to Mexico

Teresa Scorzi writes:

We started with an image of my daughter Paola at the foot of the Popocatepetl volcano in Mexico #PosOye, with the phrase “sound is the vocabulary of nature. Sound is the vocabulary of nature…..
Congratulations on all your commemorations

https://www.facebook.com/ScorzaICJ?_rdc=1&_rdr https://m.facebook.com/story.phpstory_fbid=pfbid029MzmuCDVPjTNMvvn86AYpJMLFNoPWiq6TV1onrD7P8ky6NrcAJAuFcw1azqpavyyl&id=100064492042086&sfnsn=scwspwa&mibextid=VhDh1V

and to South Africa

Where Jenny Perold sends us information from the team at Tygerberg Hospital who are continually striving to provide optimal outcomes for those living with hearing loss in under-resourced, rural communities.

One Mom has shared the video of her little child who has CP and CI (one) from Rural Eastern Cape – she is trying (with her brother) to imitate the sheep!

and to Uganda, Eddie Mukaaya sends us a message

“The commemoration of the Cochlear Implant International Day 2023 in Uganda which is also the 2nd CIICA Birthday,  gave me a fresh appreciation of how hearing technology can completely change the lives of people living with hearing loss for the better.  12 years ago when we finally made the decision to implant our daughter, we did not know what the results would be but at least we were sure that her life would not be the same if she was given the opportunity to access sounds.  Seeing my daughter as the Mistress of Ceremony at such a great event at 16 years gave me great joy

Over the years, Elaine has grown to scale up her potential in the mainstream lifestyle thanks to her Cochlear Implant.  Cochlear Implant technology is not a one-time investment but a lifelong journey that transforms the life of CI users on a daily basis.  We are yet to find out what this young lady is not capable of with her implants. She has defied the limitations of deafness.    To say that Cochlear implants work is an understatement where there are good rehabilitation strategies and maximum family commitment and involvement.”

and to UK

AVUK sends us two videos to celebrate International CI day: Lola and Sam speak for themselves:

Celebrating International CI day with Stuart, The CI Coach

and to USA

HLAA (Hearing Loss Association of America sends us this great blog post – do have a look!

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NEW EHIMA INFORMATION PORTAL: EUROTRAK SURVEYS 2022: EVIDENCE OF LOW AWARENESS OF CI GLOBALLY

The new EHIMA Information Portal http://www.HearingYou.org makes it easier than ever to access their great information and reports on hearing aid use in particular, but some helpful information about awareness of CI.

The 2022 reports from UK, Germany, Italy, Switzerland, New Zealand and France, provide evidence about how little awareness there is even there of cochlear implantation. The MarkeTrak 2022 study for the USA reveals that 4 in 10 of respondents had never heard of CI. It also reveals how few HA owners with severe/profound HL have been informed about CIs by medical professionals.

69% of the population in Germany have never heard of Cochlear Implants.

Only 18% of the HA owners with severe/profound HL have been informed about CIs by a medical professional.

In the UK, 41% of the population haven’t heard of CI

Only 30% of HA owners with severe/profound HL have been informed about CI by medical professional. 

EuroTrak is the largest comparative multi-country study on hearing loss and hearing aid usage.

Initiated by EHIMA in 2009, EuroTrak was designed as a means for raising public awareness on key issues of hearing loss and hearing care. It sheds light on hearing loss prevalence as well as on the use of hearing aids and the experience of hard of hearing people with their hearing instruments.

Recent surveys include useful questions on CI awareness, illustrating how little is known about CI even in high income countries.

What are we doing about this? Use this evidence for your advocacy work.

Go to https://www.ehima.com/surveys/

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