Sydney woman Ms Michele Nealon, who has hearing loss and cancer, has called for better communication and empathy from health workers towards patients who are hard of hearing.
She is speaking after a doctor and others in the system repeatedly ignored her requests to email or text her details of her results and appointments after she told them she could not hear on the phone.
Similar reports from people with hearing loss have surfaced this month from Britain where people are claiming the National Health System is “routinely failing deaf people”.
Nealon’s experience is not unique, according to a new British study of more than 550 people with hearing loss, released today, 7 May 2025. It found that most people who are deaf or are hard of hearing face significant communication barriers when accessing care through the NHS, with nearly two-thirds of patients missing half or more of vital information shared during appointments.
The study, entitled “I always feel like I’m the first deaf person they have ever met,” found that, like Nealon, communication barriers extended across the entire patient journey – from booking appointments to receiving results. It proposed text-based appointment systems and visual waiting room alerts.
“It’s so frustrating. I’m trying to cope with return of the cancer on top of communication issues. I haven’t cried this much since I was a teenager and I was excluded from social gatherings because I was deaf,” she said.
“I’m over it now and want to get it out in the public so something can be done, not just for me but for others with hearing loss. I want equitable health care and not to be disadvantaged because of my communication requirements.
“It’s a simple thing I’m asking – please send me an email or text because I can’t hear you on the phone. I don’t know why that is so hard.”
A highlighted note in capitals at the top of a patient’s medical record to explain they have hearing loss and have requested communication via email or text would be one possible solution, she said. Assuming all those in the practice can follow the instruction.
Nealon, who is Macquarie University Hearing Coordinator and co-chair of the Lived Experience Network at the university, said she was diagnosed with cancer several years ago. After treatment, she went into remission but unfortunately, the cancer returned this year.
“A surgeon and various other people working in radiology and pathology where I was having tests and treatment ignored my requests to email appointments or results,” she said. “They kept calling but I didn’t answer as I couldn’t hear them.”
In one instance, Nealon was waiting for crucial results about the cancer from an ENT surgeon on a Friday night, but he called several times instead of emailing or texting. She had to wait several more days before she received the results, which she said caused extreme anxiety and increased blood pressure.
One service now emails her
While one radiology and pathology service continue to call, another has taken her request onboard and is now sending emails and texts instead. “This is now my preferred service where I try to have my tests, and I try to avoid going to the other place,” she said.
On one occasion, she had to ask her elderly mother to come to her house so she could answer the phone and receive information about her daughter’s condition. “I shouldn’t have to contact mum to come over every time I need to find out results or arrange appointments,” Nealon said.
Similarly, in Britain, Ms Kate Boddy revealed in April that she had to break the news of her father’s cancer diagnosis to him due to a shortage of sign language interpreters in the NHS. “I had to continue to deliver the bad news right up to his death, right the way through his treatment, as we never knew if we were going to get an interpreter,” she said.
British politician Ms Rosie Cooper, whose parents were deaf, told itvX NeWS: “One in four (deaf) people have not taken action on a health condition, and about half of British Sign Language users have gone home from the doctor and not understood their diagnoses or how to take their medicine or what treatments they should be using.”
The Limping Chicken, UK’s deaf news site, said a report released on 24 April 2025 by the Royal National Institute for the Deaf and SignHealth revealed widespread healthcare failings affecting millions of adults in England who are deaf or have hearing loss.
UK accessibility consultant Mr Tim Scannell, who is deaf, proposed QR codes linking to sign language content so deaf patients can fully understand their care.
Separately, a team of patients, clinicians, researchers and charity representatives, led by the University of Cambridge and the British Society of Audiology, surveyed more than 550 people who are deaf or have hearing loss about their experiences with the NHS – making it the largest study of its kind.
Their findings, reported in PLOS One on 7 May 2025, highlighted systemic failures and suggested changes and recommendations for improving deaf-aware communication in the health system.
“The real power of this study lies in the stories people shared,” said lead author, Dr Bhavisha Parmar, Associate Professor in Audiological Sciences, from Cambridge’s Department of Clinical Neurosciences (Sound Lab) and UCL Ear Institute.
“Patients weren’t just rating their experiences – they were telling us how these barriers affect every part of their healthcare journey, and in many cases, why they avoid healthcare altogether.”
It found that despite it being a legal requirement, patients have inadequate and inconsistent access to British Sign Language interpreters and other accessibility accommodations such as hearing loop systems.
Missing important information
Nearly two-thirds (64.4%) of respondents reported missing at least half of the important information during appointments, and only a third (32%) expressed satisfaction with NHS staff communication skills. Respondents said they had to rely on family members or advocates to communicate with healthcare workers, raising privacy and consent concerns.
“Simple actions, like calling a patient’s name in a waiting room or giving instructions during a scan, become anxiety-inducing when basic accommodations are lacking,” researchers said.
“Respondents noted that hearing aids often must be removed for X-rays or MRI scans, leaving them struggling or unable to follow verbal instructions.”
Dr Parmar said: “We heard over and over that patients fear missing their name being called or avoid making appointments altogether. These aren’t isolated experiences – this is a systemic issue.”
The idea for the study was sparked by experiences shared online by NHS patients, particularly audiology patients, a field Dr Parmar believes should lead by example.
“We’re audiologists: we see more patients with hearing loss than anyone else in the NHS,” she said. “If we’re not deaf-aware, then how can we expect other parts of the NHS to be?”
The research team included NHS patients with deafness or hearing loss. Co-author Ms Zara Musker, England Deaf Women’s futsal captain, said her disappointing experiences with the NHS in part motivated her to qualify as an audiologist.
“The research is extremely important as I have faced my own experiences of inadequate access, and lack of deaf awareness in NHS healthcare not just in the appointment room but the whole process of booking appointments, being in the waiting room, interacting with clinicians and receiving important healthcare information,” she said.
The researchers released recommendations that could improve accessibility including:
- Mandatory deaf awareness and communication training for NHS staff
- Consistent provision of interpreters and alert systems across all NHS sites
- Infrastructure improvements such as text-based appointment systems and visual waiting room alerts
- The creation of walk-through assessments at hospitals to ensure accessibility across the full patient journey.
