EUROTRAK SURVEYS:LOW AWARENESS OF CI IN FRANCE, GERMANY AND UK
Have a look at the reports on UK, Germany and France, and see how little awareness there is even there of cochlear implantation.
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.
Meeting again after COVID, EUROCIU, OPCI AND ONICI brought together over 200 people in Rotterdam – for an amazing and inspiring conference. A third of the speakers were CI users or parents of child with CI. Accessibility was key with captioning in English, Dutch, German and Spanish; sign language interpretation provided.
Teresa Amat, President of EUROCIU and on the Board of CIICA, welcomed everyone and highlighted the collaboration of EUROCIU and CIICA. Harald Seidler, Vice Chair of CIICA, Teresa and Leo De Raeve, Chair of CIICA and Director of ONICI, and OPCI organisers, Hennie Epping, Peter Helmout and Henk van Rees welcomed us all to this exciting event!
Brian Lamb, Policy Advisor of CIICA, challenged delegates to “stop talking about CI’s as a costly intervention”. Reflecting on the challenge that while globally there are now over one million people with an implant the number should be nearer 20 million if all who could benefit had access. He argued that we should focus on the lost opportunity for the health and social care systems to save money if they do not implant those who could benefit. One of the significant impediments to this goal remains the perceived cost of the intervention. Sharing some of the latest evidence on the cost-benefit of CI’s he demonstrated that the earlier people had access to CI’s the more society would save on other interventions and the greater the benefits would be for individuals’ quality of life. He urged advocates when talking to Governments and health providers to stress the potential savings from investing in hearing care and CI’s not the cost of the intervention.
Brian Lamb of CIICA asked What does (not having) a Cochlear Implant Cost?, Sue Archbold launched the new CIICA Briefing Paper on Cochlear Implants for Deaf Children. (Downloadable in www.ciicanet.org/resources). Anita Grover, AVUK, and member of our Communication Group, inspiring about what is possible.
Sharing initial data from our survey of adults with CI: thanks to you all!
Adults with CI – what services do you get and what would you like?
Thanks to you all, our survey of adults with CI, in collaboration with York Uni, Toronto, had an amazing 1238 respondents from 40 countries. This work was supported by grant 892-2021-1077 from the Social Sciences Humanities Research Council (SSHRC) of Canada. We have begun sharing the initial data and you can look here. We have much more to do with such rich data and replies!
At the HEAL meeting in COMO, June 2022, Professor Connie Mayer, of York Uni, Toronto, and Dr Sue Archbold, Coordinator of CIICA shared the rationale and the first demographic data. The survey asked adults with CI what services they get currently, and what they would like.
Current global guidelines (Buchman et al, 2020) do not address the lifelong care necessary for both rehabilitation and technical support to maximise benefits of cochlear implantation
Goal to increase understanding of the requirements of adults who receive CIs from the perspective of the user
No previous investigations focused on the user view
Share knowledge globally with professionals, policy makers, funders, user and advocacy groups to improve practice and provision
1238 respondents agreed to participate in the survey, Representing 40 countries
Highest numbers of respondents from Germany, Australia, Brazil, United States, United Kingdom, France and New Zealand but good global coverage§
Ranged in age from 18 to 91 years; 10% under 30 years of age; Largest percentage (47%) between the ages of 55 and 75
Most (94%) reported a bilateral hearing loss ; Only (37%) used two implants ; Of 771 using one CI, 55% use a hearing aid in the other ear
Have a look at the initial summary to see more interesting information -and also see what we are now planning. The figures are interesting, but the rich free responses will give us a real insight into what life is like for Adult CI users, and will enable us to provide a powerful report to influence policy and practice.
Thanks to all – and we look forward to more help from you!
“I am very satisfied, however it is not perfect – so I wasn’t sure how to answer.” (from a CI user)
CIICA NETWORK MEETS AND PRESENTS AT HEAL CONFERENCE, COMO
For the first time for four years, we were able to meet again at this unique conference, on the shores of Lake Como, thanks to Professor Grandori.
The meeting started with Dr Shelly Chadha, of WHO, sharing the World Report on Hearing and the great initiatives by WHO in Ear and Hearing Care. Delegates were delighted to meet face to face again, and it showed us what we had missed in the past couple of years.
Leo De Raeve, our Acting Chair, introduced CIICA to the delegates and Brian Lamb and Sue Archbold shared the achievements of CIICA in its first year, with CI advocacy members in 53 countries.
CIICA presented on the initial results of the adult survey in collaboration with York University, Toronto, with Professor Connie Mayer and Dr Sue Archbold highlighting the early data from the 1283 respondents. See these results in www.ciicanet.org/news.
As is so often the case, captioning wasn’t available until Lidia Best, President of EFHOH, and Founding Member of CIICA, with the help of the excellent AV team, organised it by link from UK for Saturday morning. So useful not only for hard of hearing but for those with English as a second language, and those troubled by the air conditioning!
A great opportunity for CIICA networks to get together for the first time in person.
The discussions and plans went on until Saturday lunchtime with a great vibe, thanks to Prof Grandori and his team and the enthusiastic delegates!
25th February 2022: Our First Anniversary and International CI day! See videos from our network on the impact of the pandemic.
We are proud to be celebrating our first Anniversary on CI International Day, 25 February 2022 with so many messages and videos from around the world. See below!
With our 77 organizations and 350 individuals we can make a noise about action for CI – increased access, and lifelong services. You can access here our media messages, our shared evidence base, logo , banner, messages to share and use.
CIICA’s first year hasn’t been an easy one for us all with a global pandemic. what have we learnt and what has it taught us to take forward? How can we ensure that Ear and Hearing Care and CI in particular are funded and services provided globally? We have the evidence – of effectiveness and cost-effectiveness – see here all the messages on these global videos- by users, families and service providers determined to move CI services forward in spite of the challenges.
Let’s not lose this opportunity to improve CI provision!
Living guidelines project: building consistent standards of care for adults with cochlear implants
Building on the publication; Unilateral Cochlear Implants for Severe, Profound, or Moderate Sloping to Profound Bilateral Sensorineural Hearing Loss (Buchman et al.) this project aims to create living practice guidelines that can be adapted and adopted in country, to optimise the care for adults eligible for CI.
TheGlobal Task Force calls for consistent standard of care guidelines for treating adults with cochlear implants : The task force has three Co-Chairs:
Leo De Raeve: Acting Chair of CIICA (Cochlear Implant International Community of Action) and Director of ONICI (Independent Information and Research Center on Cochlear Implantation).
Meredith Holcomb: Director, Hearing Implant Program, University of Miami, Miller School of Medicine, Department of Otolaryngology
Ángel Ramos Macías: Professor, University of Las Palmas. School of Medicine, Department of Otolaryngology – Head and Neck Surgery and Maxillofacial
This initiative to create living practice guidelines for CI is significant because it involves key stakeholders from subject matter experts to CI Users across the globe. They will contribute to and support the effective development and dissemination of a set of accurate, consistent guidelines. These practice guidelines can be adapted and adopted in any country, to optimise the care for adults eligible for CI. Leo De Raeve
CIICA will be part of the project, led by Leo De Raeve, to ensure the user and family voice is heard.
On World Hearing Day, 2022 we are delighted to share the Nordic Declaration on Adult Cochlear implantation : IMPROVING ACCESS TO COCHLEAR IMPLANTS FOR ADULTS.
Only one in ten have access to life-changing cochlear implantation.
Patient organisations in all Nordic countries want to change this and have therefore joined forces to formulate a declaration to be used to politicians and other key stakeholders.
This declaration focuses on adults over 18 years with severe to profound hearing loss, of over 65dB7:
All adults with severe to profound hearing loss should be eligible to be evaluated for CI’s.
Professionals who see those with Hearing Loss must have up to date information and guidelines for when and how to refer patients to CI teams.
For adults eligible for CI’s, access to assessment and treatment should be provided without any unnecessary delay.
Established indications and guidelines should be matched with adequate resources and funding.
Adults with severe to profound hearing loss should get access to optimal hearing care in both ears, including bilateral implants.
CI is a lifelong treatment.
For the severe to profound hearing-impaired every technology improvement counts. Hence regularly updating to the latest technology is required, with a minimum replacement every five years.
Consumables such as batteries, coils, remote controls, swimming kit for CIs, activation of telecoil, BT/streamers and microphone filters should be funded
As a long-term goal adult screening should be introduced routinely from the age of 50 years as per the WHO recommendations for adult screening: (WHO, Hearing Screening handbook, 2021).
By accepting and committing to the declaration, the Nordic region will be set to lead the world in providing comprehensive, sensible and fair cochlear implant provision for adults. Cochlear implants are life-changing sound investments, restoring good hearing to most severely and profoundly deaf adults who strive to hear, comments Robert Mandara, VP EURO-CIU, Finland
The World Hearing Day 2022 with the theme “To hear for life, listen with care” will focus on the importance and means of hearing loss prevention through safe listening, with the following key messages:
It is possible to have good hearing across the life course through ear and hearing care
Many common causes of hearing loss can be prevented, including hearing loss caused by exposure to loud sounds
‘Safe listening’ can mitigate the risk of hearing loss associated with recreational sound exposure
WHO calls upon governments, industry partners and civil society to raise awareness for and implement evidence-based standards that promote safe listening
The exciting day will see activities round the world – view them here: https://worldhearingday.org/event-summary-mapped-by-regions/
and also see the launch of
Global standard for safe listening entertainment venues,
mSafeListening handbook, and
Media toolkit for journalists.
EURO-CIU in collaboration the European Parliament as well as several other organizations organised a Virtual Lunch Debate for World Hearing Day – a great opportunity to raise awareness and influence opinion.
As Leo De Raeve said on our Anniversary event on Feb 24th 2022 – it was a sad day to have a celebration. We have World Hearing Day 3 March and so many preparations being made. Things changed so quickly – only recently Ukraine achieved new born hearing screening and two CI’s were made available from the state. How things and priorities change.
See here their video made by Ukrainian CI users for EURO-CIU for International CI day: they haven’t been able to share it because of the situation…..https://fb.watch/btNydcPgZf/
Ekaterine Tortladze wrote to her EURO-CIU friends:
“A few days ago we celebrated International Cochlear Implant Day, World Hearing Day is approaching. Both days are known in Georgia and more and more organizations celebrate them. This year, on their own initiative, more parents congratulated each other on International Cochlear Implant Day.
This year we were also preparing and planning. Ukraine was also preparing and planning. This year, for the first time, WHO material was prepared in the Ukrainian language. And it is the effort of our member – Ukrainian association for CI Users and Maks Teriushin.
But today I am powerless. For the first time I feel that all this has faded into the background”
How can we help?? Makc Teriushin (the Ukrainian group) has produced a list of practical needs and batteries are the main objective is to get them to the Polish border. Members of EURO-CIU are working out ways to help there – groups in Romania, Slovakia and Poland sharing their activities. Here is Makc who refuses to give up… working with groups across EURO-CIU – and industry “thank you – we are distributing aid – it has arrived!” This collaboration is bigger than countries, or groups or industry: keeping communication going in this crisis.
President Teresa Amat of EURO-CIU is working hard with VP Robert Mandara to send what is needed; for example batteries to keep communication going for those with hearing loss. Joan Zamora with AICE is working with implant companies on the provision of batteries too and successfully sending them from Spain to Poland for distribution.
Katarina Klukova, of the Slovakian CI users group, along with Cosmin of the Romanian Association, Asculta Viata Asociatia, for hearing impaired persons, are preparing to send batteries and resources too. We hear that these have now arrived – and more on the way – its really inspiring to see.
Maria Rekowska – President of Slyszecbezgranic in Poland writes: “Who better to understand the needs of a deaf person than someone who cannot hear? The money raised will go entirely towards the purchase of bulk quantities of batteries for hearing aids and speech processors for hearing implants. The batteries will go to children and adults in Ukraine and Poland. Go to their website if you wish to help http://www.slyszecbezgranic.pl
In a remarkable united initiative global ENT bodies stand together for Ukraine – as you can see in this link
to ENT and Audiology News.
Lidia Best, herself Polish and President of EFHOH, and who spoke for us last week at CIICA LIVE, says: “EFHOH (European Federation of Hard of Hearing) expressed our solidarity and we are looking for contacts with Ukrainians as well as Polish friends supporting refugees and especially those with hearing loss”.
Ruth Warick, President of the International Federation of Hard of Hearing People (IFHOH) put out the following statement: “The Board of IFHOH categorically abhors war and is greatly concerned for the safety and well-being of our fellow Ukrainians, especially those with hearing disabilities, in this time of crisis. “
Let us know what you are doing and how we can help at this time in the world. Communication is even more important when times are so tough, and those deaf and with hearing loss need to be kept in touch.