Sue Archbold, Ph.D.
Coordinator for the Cochlear Implant International Community of Action (CIICA)

Brian Lamb, OBE
Coordinator for the Cochlear Implant International Community of Action (CIICA)

By Sue Archbold, Ph.D., and Brian Lamb, OBE, coordinators for the Cochlear Implant International Community of Action (CIICA)

The Cochlear Implant International Community of Action (CIICA) held its first monthly conversation for the CIICA network in October. Anita Grover, CEO of AVUK, led the group discussion. CIICA brought together eight countries, Ecuador, Slovenia, UK, Finland, Iran, Canada, Turkey and Sweden, representing users, families, advocacy groups and providers of services to share their experiences with health services during the COVID-19 pandemic. CIICA’s goal is to ensure that good communication is supported and rehabilitation is available.

Discussion leader Anita Grover shared some of her experiences as a cochlear implant (CI) user and as a provider. Grover posed the questions;

• • What has been your experience? 
  • What have we had to re-think? 
  • What have we learned as a result?
  • What do we need to do now?

There were some important issues to emerge in discussions:

Masks and Communication

There have been huge challenges for people with hearing loss with masks and screens which mask both lipreading and the auditory signal. But this did lead to opportunities to promote more understanding about the challenges of hearing issues in communication.

Impact of Reduced Services

As one contributor told us the main impact had been that “it has really been the extent to which access to services and support was so significantly affected during lockdown. ……. There was postponement of assessments, surgeries and the rehabilitation support. (user and service provider)

Another contributor noted that;

“What I see……. is the lack of speech therapy and lack of guidance for CI users….. you need more than equipment. …. So the cochlear implants, they are being given but the information and the tools that people need is unfortunately not getting out as quick now.” (Parent)

Growing Waiting Lists, Including for Children

There was also a significant concern about the impact of delays for children receiving their implants and this comment was typical of concerns;

Remote Delivery and Use of Online Services

Telehealth has been massively accelerated in some countries because of the pandemic. As one service provider commented;

“previously perhaps as clinicians we felt like patients couldn’t do things remotely, we were almost making the decision for them….I think we are much better at letting people try to do stuff before coming into the clinic.” (service provider)

While users also found that they could adjust to the changes;

“I think increasingly we see those hybrid solutions, where we…..start thinking differently.” (user/service provider)

“We need a balance of… …..Not to get rid of telepractice but to have a balance between that and meeting patients in the clinic, do both.“ (family Advocate)

Funding of Cochlear Implants (CIs) and Services

Funding of CI’s and rehabilitation services was a major concern for all the participants;

“As well as keeping up with the cost of implants, we need to keep up with the cost of lifelong care…” (User and Parent advocate)

CIICA is actively monitoring our network’s experiences during the pandemic, and what is happening to cochlear implant (CI) assessment, provision and aftercare. We are only just beginning to see the overall impacts of the pandemic. What is clear is that many children and adults have had surgery delayed, assessments have been delayed and people have found restrictions to services. As we seek to build back from the pandemic, we need to ensure that the needs of those with hearing loss are not ignored. CIICA will be continuing to monitor the situation. Please let us know your experiences at Current Issues – CIICA (ciicanet.org) or email info@ciicanet.org.

CIICA is a network of organizations and individuals established after a global consultation on cochlear implant advocacy and the gap in provisions. CIICA aims to close this gap in cochlear implant provisions and ensure lifelong services for all who could benefit. HLAA is a member of CIICA. Learn more at www.ciicanet.org.

For questions or more information, email HLAA at inquiries@hearingloss.org.

Follow HLAA and “Like” us on Facebook today!