March 2017 CornwallLive
On World Hearing Day in March, Janie Llewellyn, from Falmouth, spoke of her amazement at hearing once again after she had a cochlear implant in June 2015. Just being able to have a conversation on the phone still amazes Janie, a 71-year-old grandmother of seven girls.
For almost 15 years before she had the implant, she couldn't use the telephone at all. That meant she always had to rely on someone else to help when it came to paying bills or making a doctor's appointment. And that was only a tiny part of the frustration that she still remembers so acutely. "Every day when I wake up and put on my processor I just can't believe it – I never take the fact I can now hear for granted," she said.
She began wearing hearing aids when she was in her 30s due to a hereditary hearing problem and for the next 25 years she managed, raising her family of two daughters and a son, in between part-time jobs and, later, managing her local charity shop for 13 years. But as her hearing got progressively worse, her hearing aids no longer helped. "I couldn't hear what my family was saying. I became more and more insular and very depressed, and I didn't want to go out anywhere," she said. "Just trying to hear made me feel absolutely exhausted. I used to love going to the cinema and theatre, but I remember going to see the Moulin Rouge film when it came out but was so tired trying to pick up the words that I fell asleep with exhaustion after 10 minutes – and that was despite all the sounds of the music and colour!"
A naturally bubbly and social person, Janie loved to entertain and visit friends or meet in the local pub, but gradually that all stopped too. She added: "I found I was just cooking for people but not joining in the conversation as it was too frustrating. And going to the pub for quiz night was pointless – by the time someone had explained the question to me, someone else had already answered.” She even gave up her art classes as she couldn't hear what the lecturer was saying. The last four years before her cochlear implant, she admits were a struggle. She couldn't drive as she was unable to hear the gear change and didn't want to go out by herself or travel by train as she felt vulnerable not being able to hear the sound of traffic or the announcement of a train change. But her biggest heartache was not being able to hear her family, especially her sixth granddaughter who was a toddler at the time. She said: "I felt I couldn't bond with her, and when we had the family round the table, with my granddaughters chatting and laughing, I knew I was missing it all - I just sat there looking gormless."
Janie had heard about cochlear implants but didn't think that she would qualify, but when her audiologist at the Royal Cornwall Hospital said she would make a good candidate she jumped at the chance. "Like most people, I was nervous of having an operation but was told it was a very straightforward procedure with less risk than having your tonsils out. And yes, after I'd had it done, I wish I'd had it sooner."
Janie with her daughters Gemma (left) and Jo and granddaughter Iris.
"It was a very emotional moment - I could hear immediately. At first, people's voices sounded like a cross between a Dalek and Stephen Hawking but gradually this improved. Apparently, one's hearing continues to improve for up to five years although a plateau is usually reached about six months after switch-on. It was like being on an exciting adventure. With new sounds being assimilated every day.” Her first joy was being driven home in the car from the hospital by an old friend and being able to have a conversation for the first time in four years. And when she arrived home she couldn't believe she could hear the birds. "I felt very uplifted - I could even hear the seagulls which I now think make such a racket," she added. One of her most memorable moments was when her little granddaughter, now aged five, came up and whispered in her ear 'I love you' – "That was an extra special moment," she said. And there was more to come. For the first time, Janie was able to hear her son, Guy, who is in a wheelchair, play the French horn in the British Paraorchestra. "It was absolutely marvellous to be able to go to his concert not just to hear the music but also join in the repartee at the rehearsals and afterwards."
And it's not just Janie who is delighting in the fact she can now hear again. Her son and two daughters, Jo and Gemma, feel they have got their mum back. "She had become more withdrawn and it was so sad to see how upset and frustrated she became at family events because she couldn't hear what was going on," said Jo. "We feel we have finally got our bubbly mum back."
Janie's brother and sister are now dead, but had both been profoundly deaf in their later years. Her only regret is that her siblings hadn't lived long enough to benefit from the fact cochlear implants are now available on the NHS for adults. "I would have loved them to have experienced this. The cochlear implant has given me my life back. I now feel part of the human race again. I have regained my confidence and zest for life. To anyone thinking of having a cochlear implant, I'd say "go for it! You won't regret it”.
Janie’s story comes as experts warn at least two thirds of people with poor hearing are not seeking help. They said that by ignoring their hearing loss, people are putting their health and mental wellbeing at risk. People with mild hearing loss are twice as likely to develop dementia as people without any hearing loss. The risk increases to three times for those with moderate hearing loss, and people with severe hearing loss are five times as likely to develop dementia. Experts are working together to raise awareness that people struggling to hear need to take action: seek a hearing test, receive evidence-based treatment and stop ignoring their deafness, which places a huge strain on their health and wellbeing and a great burden on their loved ones and their families.
Professor Adrian Davis, an advisor to NHS England, vice president of Action on Hearing Loss and patron of The Ear Foundation, said: "People don't take their hearing health seriously enough. They don't place a value on it until they realise they can't hear as well. They can't communicate, can't have relationships with other people, can't have fun and can't do many things with their families.
In the UK, we have the best hearing services in the world and they are free. We need to work more with people to get them to understand that their hearing needs can be met.”
The UK hearing industry is working hard to greatly improve access for adults to hearing technology. It is calling for mandatory adult hearing health screening and a change to stringent NICE guidelines to allow more severely affected people struggling to hear to benefit from cochlear implants, available free of charge through the NHS, if their hearing aids are not enough. Recent figures show that at best only 6.7% of adults with profound hearing loss, the group most likely to meet the current NICE criteria, are implanted. Taking the first step to better hearing can be as simple as doing an online hearing test. If the results show a hearing problem, the next step is to make an appointment with a GP and ask for an audiological referral.