An opera singer who hid her deafness for more than 30 years has described “life-changing” surgery that has the potential to become the norm for thousands of NHS patients.
Janine Roebuck, 72, from London, had double cochlear implants fitted to restore her hearing, a method now being trialled nationwide to see whether it can transform the lives of thousands more people.
Under current guidelines from the National Institute for Health and Care Excellence (Nice), the vast majority of deaf adults are only eligible for one cochlear implant.
This is based on analysis suggesting that offering two is not cost effective for the NHS and a lack of evidence in the area.
To address this, the National Institute for Health and Care Research (NIHR), which receives government funding, is backing a study into two implants for adults, led by Addenbrooke’s hospital and the University of Cambridge.
Roebuck suffers from the inherited condition sensorineural hearing loss, which accounts for about 70% of all cases of genetic hearing loss.
The condition has been carried down through generations of her family.
In 2019, she underwent cochlear implant surgery on the NHS for one ear, as per the guidelines, but decided to pay to have the other ear done at the same time.
For more than 30 years, she had hid her deteriorating hearing, despite being a mezzo-soprano, performing in operas, operettas and musicals, including at the Royal Opera House in London. She has now retired.
She said having the surgery was “the best thing I’ve ever done in my life”, adding: “Having two implants is light years away from just one.
“Sound quality is so much better, sounds are fuller, clearer, louder and more natural.
“It’s much easier to tell where sounds are coming from, especially in busy spaces.
“If you’re out in public, it can be hard to follow who is speaking, making joining in with conversations almost impossible.
“As a result, you have debilitating concentration fatigue at the end of every day.”
She described how the surgery has dramatically improved her life, adding: “With bilateral implants, I no longer consider myself to be deaf. They have been utterly life-changing and, for me, have broken a generational curse.
“Struggling to hear can be extremely isolating and many people experience anxiety or depression as a result. The implants are life-changing. They reconnect you to the world and, most importantly, people.
“Communication is surely the longing of every human heart. I also feel safer and more secure having the two implants.I am more aware of and connected to what’s happening in the world around me.
“And, if anything goes wrong with one of the implants, I’m not suddenly plunged into a world of total silence.”
Roebuck said her father had the same condition and “dealt with it graciously and bravely”. Her grandfather and his brothers and sisters struggled too.
She said having the implants switched on gave her joy and over the next six months she discovered new sounds.
The new trial will run in 14 hospitals and includes more than 250 adults. They will receive either one (unilateral) or two (bilateral) implants so results can be compared. Those in the trial will need to have become deaf later in life and cannot already have an implant.
Matthew Smith, an ear, nose and throat surgeon at Addenbrooke’s hospital, and Prof Debi Vickers, a speech and hearing scientist in the department of clinical neurosciences at the University of Cambridge, are leading the study.
Smith said: “We know from giving bilateral implants to children that it can have a transformative effect on their quality of life and interactions with other people.
“Through this study, we can offer the same opportunity to adults who have become deaf, and understand the potential added value of bilateral cochlear implants, not just in terms of hearing, but also how they enrich quality of life.”
Vickers said: “Children routinely receive bilateral cochlear implants.
“These can provide three-dimensional hearing, enabling them to hear more naturally than unilateral, with improved access to sound and better engagement with society.
“Adults tell us, and I agree, that they should be given the same hearing opportunities as children.
“In turn, these will result in reduced social isolation, enriched communication, improved mental health, and better overall quality of life”.
Once the trial finishes, it will be submitted to Nice for review.
Ralph Holme, director of research at the RNID, said: “It’s wonderful to hear just how life‑changing this experience has been for Janine, and the impact it’s had on her quality of life.”
