There is overwhelming evidence that the needs of deaf people and people with hearing loss are not being met by NHS healthcare services.
Here we share two stories that bring this issue to life, showing the huge impact of being unable to access healthcare.
Caitlin shares her experiences as both a nurse and a patient as a deaf person in Wales. For Sapphire, lack of communication support led to a terrifying experience when her child needed urgent care. Rhys talks about why he wants to see improvements for people with hearing loss in Wales.
Caitlin’s story
Caitlin, 28, from Swansea, has experienced healthcare from all angles – as a deaf patient, a nursing student and an intensive care unit (ICU) nurse. Here Caitlin shares her experiences, highlighting why Wales must improve healthcare accessibility and meet deaf people’s communication needs.
A knowledge gap in healthcare training
There’s a huge knowledge gap for healthcare services in terms of how to support deaf patients.
In nursing school, there were no classes about hearing aid care and how to communicate with deaf patients, even though the majority of the elderly population has hearing loss. By contrast, we did get classes on eyesight, denture care, and helping patients eat.
The need for training is not just about direct communication; it’s also how to care for hearing technology – basic things like how to change hearing aid batteries or how to clean the tubes. These things will help support communication between staff and patient.
Inaccessible appointments
Whenever I go to the GP, I tell them that I’m deaf and that I can’t hear them when they call my name. But I was once left waiting for an hour because they thought I wasn’t there – even though I had asked them when I arrived to notify me otherwise. I think a vibrating pager system would make a difference.
I often have to remind the doctor to face me when talking multiple times within the same appointment.
I do understand that services are overwhelmed – I see that first-hand as a nurse. But communicating effectively with patients should be a standard of care no matter what, and it can be critical.
We have to find ways to improve services so that they cater for deaf people’s communication needs.
Sapphire’s Story
Not having an interpreter provided is just one of the challenges Sapphire faces in accessing GP appointments in England, with her communication needs not recorded or remembered each time she needs to get in touch. When her child needed urgent care, she was excluded from their healthcare by the absence of a BSL interpreter.
Inaccessible communication
I spent years explaining to the GP surgery that I can’t access phone calls, but they would always forget that they needed to text me. When the surgery would phone me all the time, it just made me feel rubbish and very frustrated because I didn’t know what they wanted and couldn’t find out.”
The lasting impacts of inaccessible healthcare
It’s made me feel really self-conscious and lose confidence. It feels like I don’t have control over my healthcare, like it’s done to me and not with me. I’ve had anxiety attacks which have been linked to the situation.”
The time in hospital when my child couldn’t breathe was a terrible experience. My child was rushed to hospital in an ambulance and we didn’t know what was wrong; it was so scary. My child was in hospital for a couple of nights and I was told I couldn’t be there.
This really damaged my confidence because my child needed me and wanted me there. My husband ended up having to cancel work and insisted in the end that they bring an interpreter so that I could be there, but they refused. During that whole time, an interpreter was never provided.
All communication was directed to my husband, who is hearing, and I was completely excluded from conversations about my child’s care. It was an awful experience.”
Rhys’ story
Thirty-six-year-old Rhys is a former guitarist and songwriter from Newport in South Wales. He had a brain tumour aged eight, and, two decades later, he was diagnosed with a neurological condition called superficial siderosis.
Hearing loss is a symptom of superficial siderosis. Rhys gradually started losing his hearing when he was studying music at university. A few years later, he suddenly lost hearing in his right ear and developed highly intrusive tinnitus.
Rhys shares the challenges he’s faced accessing healthcare, particularly during the Covid pandemic.
Emergency care during the COVID pandemic
I became really unwell during covid and had to go to A&E in Cardiff. My mum wasn’t allowed to come in with me, so I had to sit on my own in the waiting room, totally isolated.
I couldn’t lip read because everyone was in masks, so I had no idea what was going on. It was the most horrific experience ever. I wouldn’t wish it on anyone.
Ongoing inaccessibility
Despite making it clear that he needs written communication about appointments, Rhys still receives letters for telephone appointments from his local hospitals.
Most of the time I just look at them and laugh, but it does annoy me.
I often quote the Equalities Act 2010, but people never listen. I just don’t think they take accessibility seriously, if I’m honest with you.
I’m an advocate for superficial siderosis, the condition which has taken my hearing, and strongly believe Wales can do much better it comes to hearing loss.”