While most hearing people take daily communication for granted, there are barriers everywhere for Terry, who is profoundly deaf. As a result, he has found it a real challenge to get fair access to healthcare. A year on from our launch of the Accessible Information Standard, Community Health News finds out how we are working with people like Terry to improve access to our services.
“When Terry is in a waiting room he can’t hear his name being called,” says his girlfriend Janine. “Sometimes we’ll wait and wait and wait; I can see all these hearing people coming and going, coming and going and we’re still sitting there, waiting.” And what usually happens next? Terry says: “I’ll think, I’ve been here an hour already, so I go back to reception and say: ‘You do know I can’t hear my name being called? I’m profoundly deaf.’ They’ll say: ‘Oh, sorry.’ They ring the clinician, who eventually comes out, taps me on the shoulder and says: come this way, come this way.”
Terry was born hearing but this all changed when he was six months old and he contracted rubella (german measles). He recovered from the illness but was left profoundly deaf. He lives with Janine, who has also been profoundly deaf since she was a baby. Together they use British Sign Language (BSL) to communicate with each other and the rest of the world, using a BSL/English interpreter* when they can.
BSL is their first language, although their personalities and emotions are clear from their hands, face and voice, which are used together in rich harmony. Understanding written English and lip-reading is difficult for Terry. Janine can understand a little better and finds it easier to read English so often uses paper and pen to communicate.
She helps Terry with this too.
It’s hard for a hearing person to understand what it must be like, with so much to take for granted. “When Terry and I go out shopping, I try to talk to people but they don’t understand me – it’s just too difficult,” says Janine. “So out comes the piece of paper and I try and write notes.”
Sadly, Terry has found it difficult to access healthcare because of the communication barriers he faces. It’s a problem he’s experienced across the system, including our own Bristol Community Health services.
Booking a BSL/English interpreter
When Terry has a health appointment, it’s rarely straightforward and there are often barriers at every stage. First he receives an appointment letter through the post, which he often can’t read. “Recently Terry asked me to look at a letter for him,” says Janine. “I explained to him what it was about – he needed to go to a Bristol Community Health physiotherapy appointment. It didn’t say anything about whether an interpreter was booked. So he had to travel over to the clinic a week before to check whether there was one booked. Because of the communication issues, I wrote a note for Terry to take that said it was really important that they book an interpreter.”
The date came for the appointment, but the interpreter wasn’t there. “I asked the receptionist, using pen and paper: ‘Where’s the interpreter?’ says Janine. “She said: ‘I’m so sorry – I totally forgot to book them for you.’ Terry ended up feeling quite demoralised and disappointed.”
The couple says that this happens quite often with a range of healthcare providers. The appointment then has to be postponed until an interpreter is available. “It’s an absolute waste of my time,” says Terry. Janine adds: “I’ve explained many, many times: ‘It’s really, really important. We are Deaf BSL users, and we need an interpreter.’”
What happens in a health appointment without an interpreter? “The clinician will try and write things down via pen and paper,” says Terry. “But I find it really difficult to read English, so if it’s written down I have no access to my health. I need to be able to access it through an interpreter in my own language, BSL.”
Fair access: a basic right
The Accessible Information Standard (AIS) is a framework that’s helping us provide better support to people – like Terry – who have communication needs. AIS aims to make sure that people who have a disability, impairment or sensory loss are provided with information that they can easily read or understand with support so they can communicate effectively with health and social care services (see box above). It’s now a legal requirement for all organisations which provide NHS care or adult social care; we launched it at Bristol Community Health a year ago.
We’ve taken a long, hard look at the accessibility of our services, which has given rise to a dedicated programme of activity and a new approach to staff training, resources and processes. It’s all with a view to finding out patients’ communication needs early on and then putting the right things in place to help.
“Along with making sure interpreters are booked and present at appointments as a given, our staff might use appointment letters in large print; leaflets in ‘easy read’; longer appointments to give extra time to explain things clearly; or adapt the way they communicate – like using plain language, gestures or speaking more slowly,” says Fiona Spence, Equality and Diversity Coordinator, who has led the organisation’s work on AIS.
“The new approach has given us real momentum,” agrees Victoria Whitehead, a senior administrator for the Bristol Community Health physiotherapy team. “We are more actively asking our patients, before their appointment is booked, if they’ve got any barriers with communication and what we can do to help. Identifying needs at an early stage is key to supporting patients with communication needs, and then putting in place a range of things to help.
“We now use alerts on our patient record system to highlight things like a need for an interpreter. We record that information to make sure that other appropriate professionals can see it as well,” she says.
All this is vital for patients to access the treatment they need, says Polly Roberts, Advanced Musculoskeletal (MSK) Physiotherapist: “It’s a patient’s basic right, really.” And effective communication is key not just for diagnosis and treatment, she says, “but for safety, agreeing consent – and for making shared decisions so the patient has a really active role in their own treatment plan.”
There is still much work to be done, with lots of activity planned over the coming year. But listening to stories from people like Terry inspire us to improve so that everyone in our community has access to the healthcare they deserve. “We are trying to do more,” says Victoria. “Now we expect better of ourselves.”
What we’re doing to become more accessible
Since our launch of the Accessible Information Standard (AIS) in January 2017, Bristol Community Health is committed to:
- Asking patients if they have any information or communication needs
- Recording these needs in a clear and consistent way
- Highlighting a person’s file if they have communication needs to ensure these needs are met
- Sharing these needs with other NHS and adult social care providers, with the patient’s permission
- Acting to ensure the patient receives information which they can access and understand
For more information about AIS or to give feedback about the accessibility of our services, please contact 0117 440 9180 or email email@example.com.
About British Sign Language
British Sign Language (BSL) is the preferred language of over 87,000 Deaf people in the UK for whom English may be a second or third language. Sign languages are fully functional and expressive languages but differ profoundly from spoken languages. BSL is a visual-gestural language with a distinctive grammar using handshapes, facial expressions, gestures and body language to convey meaning. Sign language is not international – there are also the regional dialects and ‘accents’ which are present in every language. British Deaf Association: bda.org.uk
Terry and Janine kindly shared their story for a film which we’ll be using for staff training to improve the accessibility of our services. Huge thanks to them, along with their Deaf advocate Lynn Stewart-Taylor from the Royal Deaf Association
(royaldeaf.org.uk). This article first appeared in Community Health News, our newspaper for patients and the public. Read the latest edition here. * Where the word ‘interpreter’ is used in this article it refers to a BSL/English interpreter.
About our work on equality and diversity
You can see the impact we have made two years on since the launch of our ‘Valuing All’ strategy in our 2017 Equality and Diversity Report. More on our work here.