Lydia’s move to adult audiology services
Lydia (17) has had a positive experience of making the move from children’s to adult audiology services.
Lydia’s deafness was diagnosed just as she started primary school, but her parents, Kate and Nick, were already suspicious that she had some type of hearing loss. It’s believed that Lydia lost her hearing some time after birth.
She also had an operation for an unrelated condition which was thought to have led to late development of speech, but when she was put in a classroom environment her teacher also suspected a hearing loss.
“We took her to the doctor and half expected them to say she had glue ear. The consultant just came out and said ‘She’s deaf; she’s got high frequency sensorineural deafness. It’s permanent; she’ll need hearing aids,’” says Kate.
Initially Lydia only had one hearing aid, but within a couple of months she had two. She was also a candidate for cochlear implants, but because of her musical talent – she is post Grade 8 in cello and soon to take her Grade 8 piano exam – she decided against the procedure.
“I don’t think in any way my deafness has affected my musicality.”
“If we’d gone ahead with the cochlear implant, it could have impacted how I heard my instruments and, if that changed, whether I would still enjoy music,” Lydia says.
“I’ve never really had a problem with the way I hear my instruments; I don’t think in any way my deafness has affected my musicality. I didn’t need support really: I started an instrument, I loved it and it just came naturally to me.”
Lydia, who also has a younger sister, Ruby (14), is interested in going to university to study geology. So the positive move to adult services and how they could help her live more independently, either at home or if she chooses to study elsewhere, has been hugely beneficial to her.
Lydia’s final appointment at children’s services came in January last year, just before her 16th birthday. “We’d been told our appointment with adult care would be within six months but, following a change of appointments by the adult hospital, it was actually nearer 10 or 11 months,” Kate says.
Lydia’s hearing aids had a full service at her last appointment with children’s services and she was still able to get hearing aid batteries and tubing from them while she waited for her adult services appointment.
Before going to the adult audiology service, the children’s team prepared Lydia for what they would be focusing on after her move. “They gave me loads of leaflets in a pack that had a label on it called a transition pack.
“They focused on how I was going to have to start living independently soon.”
“One leaflet was about the fire service because, moving to adult care, they focused on how I was going to have to start living independently soon, even just living more independently at home because my parents go out sometimes and I’m at home alone. So, one of the things they touched on was about getting a special smoke alarm in from the fire service and they also talked about Personal Independence Payments (PIP),” says Lydia.
Another thing that was explained to Lydia was how she would be more in control of her own care when under adult services. “While I was with the children’s service they put in the effort to get in touch with me and make the appointments,” she says. “When I got to adult care it was very much down to me and if I had a problem, or if there was something wrong with my hearing aids, it would be up to me to make the appointment to go and see them and get it sorted.”
“You feel quite safe and cocooned with children’s hospitals and it’s all very nice and cosy... adult hospitals just aren’t the same places.”
Lydia feels like this added independence has come at a good time, when she’s starting to have more responsibility as a young adult, so the move hasn’t been as nerve-wracking as it could have been. “I think we were nervous because before we knew anything about how it all worked, we thought ‘Will it be nice at the adults or is it going to be a lot more difficult?'” says Kate, but she was put at ease by how helpful the adult services team were.
“You feel quite safe and cocooned with children’s hospitals and it’s all very nice and cosy... adult hospitals just aren’t the same places.” says Kate. “We were expecting the adult care services would be a less involved kind of care – not so approachable or friendly, and maybe a bit more intimidating.”
“They were equally as helpful and had a load more information and leaflets. They explained everything.”
However, Lydia and Kate realised that this wasn’t the case and were pleasantly surprised at their first transition appointment. “The department was lovely. They were equally as helpful and had a load more information and leaflets. They explained everything, and it was very easy to follow the system,” says Kate.
Lydia advises deaf young people making the same transition not to worry. “They really do make sure that you’re comfortable,” she says. “If everyone experiences it how I have, it will all be really helpful.” Kate also suggests having a list of questions, just in case something isn’t covered in the initial appointment.
Now she’s preparing to go to university, Lydia feels confident she has the support she needs from adult services to be more independent and knows she can come back and use her local service during her time away.
“The bottom line is you’ve always got your home city to go back to,” Kate says. “It will always look after you if that’s where you choose to get your care when you come back. All is very well, and Lydia’s happy so we’re happy!”