By Sue Boswell

At a recent All Ears Meeting, we discussed a study (Swords et al 2024) which highlighted low referral rates for cochlear implants. Headline figures from the study indicated that only 35.7% of patients who met pure tone audiometric thresholds for cochlear implantation were actually informed of their eligibility to be referred for assessment, and only 9.7% were actually being referred. These figures were quite shocking, and whilst there are undoubtedly many complex factors at play, as a cochlear implant recipient I was keen to contribute, even in a small way, towards addressing the issues in this study.

I discussed the study with my fellow administrators of the Southern Counties Cochlear Implant Support Group (SoCo). We oversee a Facebook group of 400 members offering advice and support to those with implants and those considering an implant. In addition, we run a website and arrange six social meet-ups each year in various locations across the southern counties. We’re not medical professionals but we do have extensive lived experience of the challenges posed by severe/profound deafness and the considerable benefits that cochlear implants can provide. Our leaflets are already distributed by our regional implant centre – University of Southampton Auditory Implant Service (USAIS) – as part of their new patient information pack, but we felt it would be beneficial for patients to be aware of local support available as soon as cochlear implant referral is mentioned.

Therefore, the SoCo administrators agreed to distribute a covering letter along with our leaflets to the main Audiology Departments across the southern counties. The aim was to raise awareness of our group amongst Audiology staff and to ask them to pass on our details to those who were referred to USAIS, as there are often many months between initial referral and first assessment. Perhaps more importantly, we asked that our details were passed on to those who chose not to proceed for further assessment. We were concerned that patients were making a quick decision to decline a referral at their Audiology appointment, without having access to sufficient support or information to make an informed decision.

Furthermore, I looked at the Audiology Department websites of the hospitals in our region to see what information was available online to prospective patients. Out of eight hospitals, only three made any reference to cochlear implants or referrals on their websites, with only two of these having further details or a link to more information. I feel that it would be helpful if our local Audiology websites contained some standard information in relation to cochlear implants, together with the NICE criteria for cochlear implantation, and a link to the USAIS website which has a wealth of further information and case studies. Those patients who initially decline a referral could also be signposted to these websites to enable them to carry out further research if they wished.

The other issue potentially influencing referrals is the delegation of NHS audiology services away from hospital Audiology departments to private providers. As part of my work, I found that one large hospital in our region has no involvement in adult hearing services at all, as private providers have taken on this role. Having looked at three private provider websites, I found that only one made a minor reference to cochlear implants and two made no reference at all. It would be interesting to know what responsibilities private providers have in ensuring that patients diagnosed with complex audiology issues are directed to the correct follow up care.

Given that the above issues are probably not unique to the southern region and are likely replicated across the whole country, I can begin to understand why the cochlear implant referral rates are so low. There is evidently considerable work to do in terms of raising general awareness of cochlear implants, ensuring that prospective patients have access to good quality support and information at all stages, and that all those who are eligible are given the opportunity to be referred.