One in four refused help to understand information about their healthcare

Survey findings show health and care services not achieving accessible information legal duty for disabled people and those with learning disabilities.
Side profile of a man wearing a hearing aid

As part of the Your Care, Your Way campaign, between March and May 2022, Healthwatch carried out an online survey of 605 people affected by communication challenges. 

  • One in four (28%) 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%). 
  • People also reported that the quality of communications from NHS and social care services had got worse over the last two years. Two-thirds (67%) felt that the way health and care services communicate with them had got worse or slightly worse over the course of the pandemic. 

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 that they could understand had a further impact on their mental health and wellbeing. 

Why we need better Accessible Information Standard

The findings come as NHS England is conducting a review of the Accessible Information Standard.

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, we 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.

Local impact following the you care your way campaign

Following the your care your way campaign and the work of Healthwatch Coventry the new Coventry and Warwickshire Integrated Care Board has included actions in its Communities Strategy to review and strengthen implementation of the NHS Information Standard across the ICS.

This is recognition of the importance of the standard and we look forward to progress to ensure that people get the information in the way they need at the right time

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 that fact that their rights to accessible information are protected in law.
— Louise Ansari, national director at Healthwatch England

Find out more about the results of the accessible information survey

Find out more