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Your Care, Your Way – what you said

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Healthwatch England has published new findings, which show services are failing in their legal duty to provide accessible information for people with physical and learning disabilities.

As part of the Your Care, Your Way campaign, between March and May 2022, an online survey was carried out which heard from 605 people affected by communications challenges.

People being refused communication support

One in four respondents (28%) – including deaf, blind and people with learning disabilities – said they had been refused help when requesting support to understand information about their healthcare. This included information being provided in formats such as Braille, British Sign Language and Easy Read.

Not being given information in the right format affected people’s mental health and wellbeing (38%), meant they missed out on important information about their health (29%) or meant that they could not contact a service they needed (27%).

Respondents also reported that the quality of communication from NHS and social care services had worsened over the last two years. Two-thirds (67%) felt that the way health and care services communicate with them had gotten worse or slightly worse over the course of the pandemic.

Impact on people who have mental health conditions

It is not just people with sensory impairments or learning disabilities who are affected by this issue.

A fifth (22%) of those who reached out to Healthwatch to share their experiences identified themselves as having a mental health condition, such as depression or anxiety.

Of these people, 35% reported they rarely or never get the support they need to understand healthcare information or communicate with staff. The majority of them (70%) also said that the lack of information in a format they could understand further impacted their mental health and wellbeing.

Why we need better Accessible Information Standard

The findings come as NHS England (NHSE) is conducting a review of the Accessible Information Standard (AIS). The Government created this legal requirement in 2016 to ensure all publicly funded health and social care providers meet the information and communication needs of people who are deaf, blind or have a learning disability. Publication of this review is expected later in the year, with updates to be implemented by April 2023.

Earlier this year, Healthwatch England uncovered that many health and social care providers significantly failed their duty to ask about people’s communication needs and then act on this information.

They joined forces with leading disability organisations, including RNIB, RNID, Mencap and SignHealth, to inform the long-awaited review of the AIS. The coalition called on NHSE to take on board their recommendations, including stronger accountability across services to protect people’s rights to accessible information.

Louise Ansari, national director at Healthwatch England said:

“Our findings are a stark reminder that some of the most vulnerable people in our society are still excluded from access to healthcare because they communicate in British Sign Language or they need information in visual formats. And this is despite the fact that their rights to accessible information are protected in law.

“People’s right to accessible information should be based on their communication needs, not just on a diagnosed disability. For instance, people who have a mental health condition or are waiting for a diagnosis should have a right to request communication support in the same way as people who have a sensory loss or a learning disability.

“If people cannot get information about their healthcare they understand, this can have a significant impact on their mental health and can lead to them missing doctor’s appointments or taking the wrong medication, putting them in danger.

“As we are waiting for the review of the Accessible Information Standard, we strongly advise that NHSE and the newly created 42 integrated care systems ensure equitable access to healthcare for everyone.”

Find out more about the results of the accessible information survey

Get in touch

If you would like to tell us about your experience of accessing health and social care services in the last 12 months please get in touch.

Your Care Your Way

Your Care, Your Way

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Clear, understandable information is important to help you make decisions about your health and care and get the most out of services. 

The Accessible Information Standard gives disabled people and people with a sensory loss the legal right to get health and social care information they can understand and communications support if they need it. But, is the standard being delivered by services and does it go far enough?

We want to help NHS and social care services understand the answer and make sure health information is clear for everyone, no matter what their needs.

Our campaign ‘Your Care, Your Way’ aims to:

  • Find out how well health and care services are delivering the accessible information standard.
  • Make sure that, if the standard covers you, you know your rights.
  • Find out who else has problems understanding information about their healthcare and needs to be covered by the standard.
Why is clear information important?

We all expect to be involved in decisions about our health, treatment and support.

But 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.

Some people find getting clear and understandable information even harder because they have communication needs that require support.

For example, you might need an interpreter or information in format like Braille.

What rights do you have?

The Accessible Information Standard gives you the right to be given information and communication support when using health and care services.

If you have a disability, impairment or sensory loss, or are a parent or carer of someone who does, you should expect:

  1. To contact and be contacted by services in ways you find accessible
  2. Services to give information and correspondence in formats you can read and understand
  3. To be supported at appointments if needed.
  4. Health and care services to support you to communicate.

 

Find out more about the campaign and your right to accessible information.

Find out more: BSL and Easy Read