Are people getting their right to accessible information?
Medical and healthcare information can be complex, and if you don’t get clear and understandable information, you might not make decisions that are right for you or be able to access services at all.
By law, all National Health Service (NHS) and social care services must ensure they communicate in a way that disabled people and those with an impairment or sensory loss can understand. So, for example, if you’re D/deaf, you should be able to use a British Sign Language (BSL) interpreter at an appointment, rather than rely on family or friends.
Although the Accessible Information Standard came into force in 2016, our evidence suggests that people are still struggling to get the support they need. This became worse with start of the pandemic in March 2020.
Since the COVID-19 pandemic began, we’ve heard from many more people who haven’t had the support they needed to communicate with the health service.
Things need to change. That’s why we’re campaigning for everyone to be given healthcare information in the way they need it.
Your Care, Your Way
We’ve teamed up with charities including Mencap, Sign Health and RNIB to campaign for more accessible information. Our new campaign, Your care, Your Way, aims to raise awareness of people’s right to accessible information, improve policy and determine whether the Standard should be extended to more people.
What did 6,200 people say about the challenges they face?
We analysed the stories that 6,200 people shared between April 2019 and September 2021 to assess whether the NHS is delivering their obligation to provide accessible information. Whilst some people experience good communications support from services, we found many are not.
Problems accessing and using services
Here are just some of the obstacles people face, leaving them frustrated, concerned about their health and reliant on others.
Overlooked needs
When services are designed, people’s communication needs are often overlooked. These barriers can prevent people from accessing vital support for their disability or health concerns from the very first step. We heard from blind people being asked to fill out hard copy forms to get a white cane, to GP surgeries that expect people with hearing loss to book appointments over the phone.
Support not in place
When services have not put basic support in place or are unwilling to provide the help people are entitled to, it can have a detrimental impact. For example, hearing loops can greatly reduce background noise, improving hearing aid users’ understanding – but many dental practices haven’t installed them and don’t offer a signing language service.
Inconsistent service
Even when services recorded people’s communications needs, they did not always provide support. For example, providers didn’t consider emailing information as audio formats or Word attachments which can be read by blind people using assistive technology. As a result, people told us they missed appointments, because services had sent them letters which they couldn’t read. Other examples include interpreters not always turning up for meetings or doctors not knowing that they needed to take more time to explain an issue clearly.
The burden on patients and families
When information is not in the correct format or support is unavailable at appointments, individuals often rely on family, friends or carers to translate information. People told us that not being able to access healthcare in the way they needed often impacts their independence. They feel less in control of decisions and are forced to share sensitive health information with others.
I was booked in to have a small procedure done at the GP surgery. No interpreter had been booked. I had to contact my daughter to come along and sign for me - only to be told she then couldn't come in with me as she was a family member!
Not enough awareness
A lack of awareness about what patients should expect can often cause
problems:
Staff support and training
Doctors, nurses and care staff require training to understand people’s communication needs. But this awareness is often missing in day-to-day interactions. A blind person told us that a staff member called out their name for an appointment and then walked away expecting them to follow.
Some staff members also tried to communicate with D/deaf patients by shouting, and in one case offensively referred to patients as ‘deaf and dumb’ in discharge letters."
Information about rights
People told us that they were uncertain about what they should expect regarding their rights under the Accessible Information Standard or where to go for information. This uncertainty makes it harder for individuals to ask for support.
The impact of COVID-19
With new COVID-19 guidance issued at pace by the Government and NHS during the pandemic, the absence of accessible information was a significant barrier.
- Many D/deaf people struggled to understand daily Government briefings because BSL interpreters were not present. A judicial review in 2021 found that the briefings were discriminatory because they failed to provide a reasonable adjustment.2
- Individuals who rely on lipreading found it impossible to understand staff wearing masks, which resulted in missing crucial information about their health. Other challenges included using digital technology where people had their camera turned off, and the NHS COVID-19 service via 119 as it wasn’t Short Message Service (SMS) enabled.
- There was a lack of COVID-19 easy read information for people with learning disabilities, and families found it tricky to relay this information too.
Restrictions to stop the spread of COVID-19 prevented people with communication needs from bringing along a loved one or carer to help them at health appointments.
“The GP Practice and the Hospital, various health care professionals have been ringing insisting that over the phone appointment is the only available appointment … but I cannot hear them on the phone I am profoundly deaf, the video calls are useless for deaf people, I cannot read lips. … Now with face coverings, masks, visors, plastic screens, it makes it even worse for people whom are deaf or hard of hearing to understand conversation, any conversation is muffled.” - Story shared with Healthwatch York
Outstanding services that adapted to meet people’s needs
The public was also keen to share examples when services went above and beyond the Accessible Information Standard, resulting in a positive experience.
- In Sheffield, staff changed their masks to visors to ensure people could lipread and pre-booked interpreters for the duration of inpatient hospital stays.
- In Harrow, services worked alongside the Romanian community to produce important information about accessing healthcare during the pandemic in translated formats.
- In Bristol, people could access some GP websites in different languages, resulting in wider understanding amongst people who didn’t speak English as a first language.
Does the Standard go far enough?
The Accessible Information Standard aims to ensure people who have communication support needs can understand and access healthcare. However, the Standard doesn’t currently apply to people who speak English as a second language and need translation support. It also doesn’t require services to provide accessible information on digital platforms.
People with limited or no English tell us that:
- There is a lack of interpretation services: Whether it’s a face-to-face appointment or over the phone, language barriers make it very hard for people to get the proper care. A lack of translation services also affects family members. One example is someone who had to ask their 15-year-old to miss school to interpret for them.
- A lack of translated materials results in misinformation: People from different communities struggled to understand COVID-19 restrictions and access healthcare during the pandemic. For example, Turkish and Kurdish communities turned to overseas media outlets for information. This led to confusion over the current rules in the UK, including what to do if they had COVID-19 symptoms.
- Feeling ostracised by staff: Many people felt staff were rude or dismissive about their health concerns due to their lack of English fluency and culture. Members of the Somali community said they were dismissed by GPs, which meant they accessed care via A&E or abroad.
English isn't my first language and I sometimes need her [ a physician] to repeat or clarify something, but I don't feel comfortable asking her anything. It can be quite humiliating,
Meeting accessibility needs online
The pandemic meant NHS services moved online overnight. However, accessibility needs were not always considered during this changeover. For example:
- Many GP surgery websites had conflicting information about how to access services. There was limited or no information on how to access interpreters on some websites. Website and social media information could also not be read on a screen reader, making it hard for people with visual impairments to access information online.
- In many cases, GPs expected people to phone reception to book an appointment, significantly limiting D/deaf people who needed support.
Steps we are taking to improve access
Everyone should have the right to be given healthcare information in a way they can access and understand. Services that exclude people from accessing care because of their communication needs breach their legal duty under the Accessible Information Standard.
With the NHS England conducting a review of the Accessible Information Standard this year, we have taken steps to ensure that your concerns inform their plans.
Joining forces with UK’s leading charities, we have set up several recommendations for NHS England and other stakeholders to ensure health and care services fully meet people’s communication needs and improve access.
Tell us your experience
Had problems accessing healthcare information in the way you need it? Join our campaign and share you experiences.
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If you need this information in a different format, please email enquiries@healthwatch.co.uk or call 030000 68 3000.
