Deaf and hard of hearing people's healthcare experiences

The feedback people with hearing difficulties have shared with us highlights how important it is to have an accessible experience when getting information from health and social care services. 

But it also suggests that some services’ compliance with key legislation is patchy. This can affect the mental and emotional wellbeing of those who are deaf or hard of hearing.

In this article, we’ll talk about the key themes we found in people’s feedback, and some of the steps being taken to tackle them. 

Background

About 12 million adults in the UK are deaf, have hearing loss or tinnitus. By 2035, this figure is expected to increase to 14.2 million adults with hearing loss greater than 25 decibels hearing level.

Under the Equality Act 2010, all public organisations must ensure disabled people can access the services they provide. The NHS introduced the Accessible Information Standard in 2016 to ensure people with disabilities, including deaf and hard-of-hearing patients, have  an accessible experience when getting information from health and social care services.

Communication with services

Our research shows that deaf and hard of hearing people have difficulties with accessing GP surgeries, as GP surgeries often insist on booking appointments via phone call. Requests for communication via text messages are often ignored, leading to poor access to GP appointments. 

"You can't make an appointment at reception. You have to book it by phone, which I have to ask my husband to do for me because I am deaf. The system discriminates against me!" – Story shared with Healthwatch England 

This means some deaf and hard-of-hearing patients experience a lack of privacy because they have to rely on family members to make appointments for them. Similarly, deaf and hard-of-hearing people, who need face-to-face appointments so that they can lip read, may have to rely on a family member to help them communicate and understand what the healthcare professional is saying.

"Both GP and hospitals insist on phoning me – even though I have made it clear I don't use a phone as I am profoundly deaf. I have asked them to either email or text me instead. I know it's on my records, but its ignored. When they phone, they end up speaking to my husband – not me – so I feel I have no privacy regarding my health problems" – Story shared with Healthwatch England. 

People talked about the poor level of communication when attending their appointments in person. One outlined that the receptionist refused to remove their mask,  preventing them from lipreading. 

We also heard that some hospitals and GP surgeries lack assistive listening technology that would be helpful to deaf and hard-of-hearing patients. Healthwatch East Sussex found that multiple GP surgeries in Eastbourne did not have hearing loops installed. Some surgeries that did have them installed failed to ensure the loops were working correctly.

BSL services

Some deaf people need a British Sign Language (BSL) interpreter at appointments. Even though providing a BSL interpreter is a requirement of the Accessible Information Standard, healthcare professionals don’t always book one when needed. In these instances, affected patients must cancel or rearrange their appointments.

"I travelled with my deaf, mute neighbour to the hospital using community transport. There was no BSL interpreter for her in the ambulance or the hospital radiology suite. I then found out there is only one SignLive unit and no interpreters for the whole hospital. My neighbour was denied the dignity and legal right to understand and consent to her own treatment." – Story shared with Healthwatch England 

We also heard that some deaf people express concerns about confidentiality when speaking to a counsellor or therapist, as there is only a small number of BSL interpreters. People mentioned a lack of trust in the confidentiality of interpreters, specifically when speaking to therapists or counsellors. 

"The Deaf community is very small, and the interpreters seem to know everyone, people don't trust the confidentiality of the interpreters when speaking with a counsellor or therapist." – Story shared with Healthwatch County Durham

Hearing aids and other issues

Many patients with hearing aids reported difficulty when booking appointments on the phone because of the hold music being much louder than the receptionist. 

"Booking appointments on the phone is tricky with hearing aids; often directions to pick a number that suits your call is too quick to listen to; waiting music is often scratchy and too loud; receptionists are often hard to understand; also speaking quickly; much quieter than the loud holding music so it often takes a while to reacclimatise. It's not a nice experience. It would be preferable to book online." – Story shared with Healthwatch England. 

There is also concern about the closure of community hearing aid clinics. People have talked about their worry about where to get repairs and new batteries for their hearing aids. One person even reported having to travel 32 miles for a short appointment to get their hearing aids checked. 

Other issues people have mentioned include difficulty getting ear wax removed, leading to delays to the treatment (i.e. operations) they needed to treat their deafness. One person also mentioned not being able to get support for their tinnitus.

What’s happening to make services more accessible?

An updated version of the Accessible Information Standard is due to be introduced soon to require services to do more to help people with communication needs. Organisations will be asked to check annually that they're complying with the standard and offering support to all patients the standard covers.

Healthwatch worked with SignHealth and other national charities on a campaign called Your Care Your Way to call for changes to the AIS. We’ll share more information about what the updated standard means when it is published. 

In the meantime, you can give feedback to us nationally about whether services are making it easy for you to communicate with them, or contact your local Healthwatch.