HearingAmbassadors | Hearing Ambassadors

What to Do if You’re Not Getting the Hearing Support You Need

We recently received a heartfelt message from one of our readers that really resonated — and we suspect it might with you too.

“While browsing the web yesterday I came across your very helpful site. I’m not sure how I didn’t pick it up sooner – but it was a very timely event as I’m feeling really quite down about my hearing. I’ll be 81 in a few days’ time…”

This gentleman’s story spans six decades of living with hearing loss — a journey marked by persistence, frustration, and resilience. Diagnosed in his twenties with significant hearing loss in one ear, he was told by hospital audiology that “it’s not something we can correct.” He was eventually given hearing aids, but support remained minimal.

Many years later, another hearing test showed that his other ear now had almost no hearing. Yet again, a consultant’s letter advised him to simply “carry on” with hearing aids — with no further investigation.

Fortunately, a referral to a specialist centre changed everything. There, doctors identified an acoustic schwannoma, a type of benign tumour, and provided targeted treatment and new hearing technology (BiCROS aids). For the first time in decades, he felt his hearing needs were properly understood — and his previously “poor” ear became the better one.

Photo by Anthony Camerlo on Unsplash

Now in his early 80s, he’s once again facing difficulties. Both sets of hearing aids — NHS and private — have let him down, and he fears his remaining hearing may be declining. Another specialist appointment is on the horizon, and he’s understandably anxious and hoping for answers.

So what can you do if you feel you’re not getting the right support for your hearing?

Sadly, this story is not unique. Many people are told to simply “get on with it” — that hearing loss is inevitable, not treatable, or not worth further investigation. But here’s the truth:

You are entitled to proper care and attention — at any age.

Here are some steps you can take if you feel you’re not being listened to or supported:

1. Trust your instincts

If you feel something isn’t right — a sudden drop in hearing, one-sided loss, tinnitus, dizziness, or hearing aids no longer helping — don’t ignore it. Keep a simple log of your concerns to share with your GP or audiologist.

2. Ask for a second opinion

If your first consultation leaves you with more questions than answers, ask to be referred elsewhere — ideally to a specialist ENT or audiology centre. You have the right to be heard, quite literally.

Photo by Brett Jordan on Unsplash

3. Persist with your GP

Some conditions, like acoustic neuromas (schwannomas), can go undetected unless someone takes the time to investigate further. If your GP listens and takes action — as in the case above — it can make all the difference.

4. Check your hearing aids

If you suspect your hearing aids are no longer working well, request a reassessment. You may need reprogramming, servicing, or new technology. If you have aids from both NHS and private providers, don’t be afraid to compare and ask questions.

5. Reach out to others

You are not alone. Connecting with charities, support groups, or local hearing clinics can provide emotional support, practical tips, and sometimes even advocacy help.

Photo by Toa Heftiba on Unsplash

We’re so grateful to our reader for sharing his story — and we wish him the very best at his upcoming appointment.

Have you ever felt let down by the hearing care system? What did you do about it?
We’d love to hear your experience — and any advice you’d give others in a similar situation. Let’s learn from each other and help make sure no one is left to struggle alone.

Please click here to share your story

Hear are some groups that might help you:

RNID

Hearing Loss Association of America

One ordinary day, a virus changed everything.

About twelve years ago, my husband lost most of his hearing due to a viral infection. Just like that, he went from fully hearing to severely deaf—and our lives were turned upside down. At first, we didn’t fully grasp the impact it would have. But little by little, the effects of hearing loss crept into every corner of our lives. He struggled to understand speech. Conversations became exhausting. Group gatherings were overwhelming. Telephone calls were impossible. Even simple tasks like chatting to someone at the supermarket checkout became a source of stress.

Photo by Kelly Sikkema on Unsplash

We both found it hard. He was frustrated that I didn’t seem to speak clearly. I couldn’t understand why he wasn’t responding. The miscommunications built up. Over time, my husband began to withdraw. He’d sit quietly with a book rather than try to join in a conversation. I think he found it more comforting to be alone than to face the embarrassment of asking people to repeat themselves again and again.

Evenings out with friends stopped altogether. The wall of background noise in restaurants made conversation unbearable. He no longer felt like himself. And I no longer felt like I could reach him.

We knew something had to change—but what?

The First Turning Point: Finding Support

Just when things were starting to feel hopeless, we discovered our first glimmer of hope: a LinkUp Support Group run by Hearing Link Services.

It was life-changing.

For the first time, we met others who understood exactly what we were going through. We realised that hearing loss doesn’t just affect one person—it affects everyone close to them. And more importantly, it’s not just about the ears. It’s about communication, relationships, confidence, and connection.

Photo by Dan Meyers on Unsplash

We began to make small changes at home. I’d turn off the radio when we were talking. I’d face him when I spoke. I’d double-check he’d caught anything important. These things are second nature to us now—and yes, we’ve laughed at some of the hilarious things he thought I’d said!

If you’re struggling like we were, please know: you’re not alone, and there is help out there.

The Second Turning Point: Learning to Sign

A few years later came our second big breakthrough. We discovered that our local Adult Education Centre was running a Lipreading and Signed Communication course.

We didn’t know much about lipreading, and to be honest, we weren’t sure sign language would be relevant. Wasn’t it just for people born deaf? But we were curious, and we decided to give it a go.

We’re so glad we did.

The class was aimed at people like us—those who had lost their hearing after childhood. The method used was a combination of Lip Reading and Sign Supported English (SSE), which uses British Sign Language (BSL) signs alongside spoken English word order. It felt strange at first, like stepping into a whole new world. But slowly, it began to click.

And with it, something else clicked too: communication came back.

Photo by Volodymyr Hryshchenko on Unsplash

Rebuilding Confidence and Connection

Bit by bit, my husband’s confidence returned. His mood lifted. And most importantly, he felt included again.

When we go out in a group now, I can sign key parts of the conversation to him, making social situations far less isolating. Even better, our friends have become curious. They ask questions. They try out signs. They engage with him in ways they never did before.

It’s been transformational – for both of us.

Sign language hasn’t just helped us communicate. It’s helped us reconnect. It’s opened a door to inclusion, not just in our relationship, but in the wider world around us.

Photo by Brett Jordan on Unsplash

Give Sign Language a Go!

If you or someone you love is navigating hearing loss, why not give sign language a try?

It’s not just about words—it’s about connection, confidence, and a better quality of life.

That’s what our charity, Hearing Ambassadors is all about too.

Click here to see other posts about Sign Languages , how to get started, and the many ways it can make a difference.