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The system needs an overhaul!

Published Date: 07 Jul 2022
Photo: Jenny's initial audiogram results, which flagged up concerns about how her hearing loss had been missed for so many years

Like the young child Jamie in this BBC article, my parents were told that my hearing was ‘normal’ at a check when I was eight months old. Like Jamie’s parents, my parents were relieved to be told that my hearing was normal as concerns had been flagged up at birth.

The most concerning part is that this is not a new problem. I was misdiagnosed back in 1994, whereas Jamie, and hundreds of other children, have been misdiagnosed within the last five years. Enough is enough.

As I’m sure you’ll be aware if you’re reading this blog post, misdiagnosed hearing loss is a less than ideal situation for both parents and child. Children are mislabelled as having poor concentration, being disruptive and potentially having conditions such as autism. Parents are told that they’re interfering, and that medical professionals are always right and that they’re wrong. They’re told that they’re wrong about their children, who they know better than anybody else.

This is so wrong, on so many levels. According to the BBC article, reports claim that in England, the average age of diagnosis is 109 days, whereas at NHS Lothian it’s 4.5 years.

I’d like to shake up this statistic by posting that it took 23 years to diagnose a hearing problem I’ve had since birth. People are quick to point the finger at my parents, yet it’s not their fault - they were trusting medical advice.

When I was around four, I was the clumsiest child imaginable. My GP’s advice to my mum? Take her to ballet lessons. No suggestions of deafness or dyspraxia. Nothing. I went to my GP again at 14 to ask about a referral for speech therapy. I was being bullied and felt self-conscious about my voice because it was pitchy and because I struggled to pronounce certain words. At no point did my GP even discuss the possibility of deafness with my mum and me. My GP was not a bad doctor, he was always friendly and was very helpful for a range of more immediately obvious conditions such as eczema.

I’m not the first person to suffer from hearing issues in my family. My maternal grandfather’s sisters were both deaf to some degree, with at least one of them suffering from hearing loss from a younger age, according to my mother. My dad’s adoptive mother was profoundly deaf and wore chunky hearing aids that whistled terribly. I grew up watching her lip-read and then lip-reading alongside her. I never told my parents that I couldn’t hear in my left ear, because I coped well at school and always passed my exams, bar one disastrous A-level exam.

I’m one of the lucky ones. My hearing in my right ear is in the ‘normal’ range, whereas I suffer from severe to profound high-frequency sensorineural hearing loss in my left ear. The volume in my left ear is approximately 50% lower than that in my right ear. I did not miss any major developmental targets, although my mum has told me that I was slow to walk and speak, and I’ve always struggled to pronounce ‘r’s in words such as ‘red’ or ‘quarrel’. Even with a hearing aid, this still is an embarrassing problem for me – I tried to discuss the book ‘Coraline’ with some acquaintances a few weekends ago, and I had to spell out the title as they looked on in confusion. Fab.

Being offered a hearing aid at 23 years old was one of the best days in my life, although I’m still beyond frustrated that my hearing loss was missed by the so-called experts. Why are hearing tests being conducted with lights that correspond with where the sound is? I’m sure I’m not the only person with hearing loss who uses visuals as a coping strategy!

My heart breaks for families such as Jamie’s, where the child has medical professionals get frustrated and not take them seriously. Something needs to change, because this should not be happening in 2022!

*Please note, this blog, and all our family blogs, are the opinion of the author and not of the National Deaf Children's Society.

Find out more information about understanding your child's hearing tests. 

Jenny

Jenny is 27 and has single-sided high-frequency sensorineural hearing loss in her left ear, which is severe to profound at the highest frequencies. Jenny uses a Phonak Receiver-In-Ear hearing aid.