For many of us, a visit to the doctor’s office can be wrought with anxiety. A persistent cough that won’t go away or an ailment we hope is nothing serious can make GP visits emotionally difficult. Now imagine that you can’t phone the doctor to make an appointment, you don’t understand what your doctor just said, or you don’t know what the medication you’ve been prescribed is for. These are all situations that many Deaf people face when accessing healthcare services.
We use Deaf (with a capital “D”) here to talk about culturally Deaf people, who were typically born deaf, and use a signed language, such as British Sign Language (BSL), as their first or preferred language. In contrast, deaf (lowercase “d”) refers to the audiological condition of deafness.
For our study, we talked to Deaf patients in Wales who communicate using BSL to learn about their experiences with healthcare services. Their experiences illustrated the challenges they face, and showed us that patients have unique needs. For example, a patient born profoundly deaf would have different needs from a person who became deaf later in life.
Many Deaf communities around the world face inequalities when it comes to accessing health information and healthcare services, as health information and services are often not available in an accessible format. As a result, Deaf individuals often have low health literacy and are at greater risk of being misdiagnosed or not diagnosed at all.
Problems with healthcare access often begin when making an appointment. Because many GPs only allow appointments to be made over the phone, many of those we interviewed had to physically go to health centres to ask for an appointment. Not only is this inconvenient, booking without an interpreter could be difficult and confusing.
Interpreters are essential for patients to receive the best care. However, we heard recurring stories of interpreters not being booked for appointments, arriving late, and – in some cases – not coming at all. Before interpreters were available, one woman described going to the doctor’s office as intimidating “because the communication wasn’t there”. One participant said they always make sure an interpreter has been booked, saying: “Don’t let me down… I don’t want to be going through this again.”
These issues are worsened in emergency situations. One woman recalled an incident where despite texting 999, she didn’t get help until her daughter phoned 999 for her, acting as her interpreter throughout her entire interaction with emergency services.
Another person who texted 999 said:
There are all these questions that they are asking you. And all that we want is to be able to say, ‘We need an ambulance’ … Because what’s happening is we’re panicking, we don’t understand the English, there are all these questions being texted to us, it’s hard enough for us to understand it anyways without panicking at the same time.
Interviewees also recalled emergency situations where interpreters weren’t available at short notice. One Deaf woman recalled when her husband – who is also Deaf – was rushed to hospital. They received no support from staff, and no interpreter was provided to help them.
Deaf awareness and language
Many problems that our interviewees faced related to language, and a lack of Deaf awareness. Many healthcare providers didn’t seem to know that BSL is a language unrelated to English – meaning many BSL users who were born Deaf or lost hearing early in life have limited proficiency in English. One interviewee explained that many healthcare providers think all Deaf people can read, without realising that many BSL users don’t understand English – with many being given health information written in English that they couldn’t comprehend.
Interviewees wished healthcare staff were more Deaf aware, as many healthcare providers lacked understanding about Deafness. This affected the doctor-patient relationship, with many interviewees agreeing that doctors “can be a bit patronising at times” and that this patronising attitude made interactions difficult. A lack of Deaf awareness can also lead to Deaf patients feeling forgotten. Many interviewees felt that Deaf people are easily ignored, with one interviewee saying: “I always feel like Deaf people are put last.”
No ‘one-size-fits-all’ solution
New technologies and services are being offered to help Deaf patients make appointments – such as having an interpreter call the doctor’s office during a video call with the patient.
Additionally, some health information is now available online in BSL. Interpreters can also be more easily available at short notice, for example in emergency situations, through video chat. Remote services particularly show promise for mental health treatments, by providing remote mental health counselling in BSL and other types of confidential services.
Because Deaf communities are small and tight-knit, patients may be wary of interacting with local Deaf counsellors or interpreters, worried about potential gossip. Several interviewees even said that they would not want a Deaf counsellor even if offered, for fear that the counsellor might gossip about them with others in the community. One interviewee suggested a mental health service with a remote online interpreter as the best solution.
The problems and potential solutions that emerged from our research are similar in other Deaf communities around the world. Though technology might offer some promising solutions, it’s important to realise that these might not work for everyone.
Patients have individual differences, needs, preferences, and cultural differences. Some patients may prefer a remote interpreter, others face-to-face interpreting – and these preferences may also depend on the type of appointment. What’s important is that Deaf patients have choice, and that new services, such as through the use of new technologies, are offered in addition to, not instead of, established health services.