Our policy position on accessible information
By law, under the Accessible Information Standard (AIS) 2016, all publicly funded health and social care providers must ensure people are given information about their health and care in the format they can understand, such as large print, Braille, digital text files, and audio files, to mention a few. There’s a growing body of evidence suggesting that this is not happening.
With NHS England currently reviewing the AIS we have worked with partners to identify improvements and actions to help services meet the legally-binding requirement and understand its role.
We are calling for:
- Health and care services to be made accountable for fully delivering the AIS
- Every health and care service to have an accessibility champion
- Better IT systems so that patients can update services with their communication needs
- Involving people with communication needs in designing better services
- Mandatory training on accessible information for all health and care staff.
Read our recommendations.
Our evidence
Throughout the Covid-19 pandemic, we started hearing from increased numbers of people who weren’t getting the support they needed to communicate with the health service.
In late 2021, we reviewed the stories that 6,200 people shared with us between April 2019 and September 2021 to determine how well the NHS delivers the AIS.
We found that people who need to be given information in a format they can understand struggle at every stage of their healthcare journey. Services often overlook communication needs, and support is only sometimes in place. People often have to rely on family, friends or carers, which takes away their control over their health.
We also submitted Freedom of Information (FoI) Act requests to NHS trusts asking how well they are meeting the AIS. Of the 139 Trusts that responded to the FoI requests, only a third (35%) told us they are fully compliant with the AIS.
A survey we conducted between March and May 2022 found that more than one in four respondents (28%) said they had been refused help when requesting support to understand information about their healthcare.
Our partners have also surveyed more than 900 people with disabilities and NHS staff, highlighting how people’s information and communication needs are not being met.
Our work
In February 2022, we joined forces with UK’s leading charities, including RNIB, RNID, Mencap and SignHealth, to launch Your Care, Your Way - a national campaign calling for improvements in accessible information across the NHS and social care.
Over the course of the year, we met regularly with the NHS England team reviewing the AIS, to feed in the findings and recommendations of our work.
We also supported local Healthwatch and other patient-led organisations to write to local services, bringing together service managers and people with lived experience to discuss improving accessible communication support.
We held workshops and webinars for clinical staff, NHS leaders and policy-makers to share our findings and recommendations.
Impact of our work
NHS England has taken on board most of our recommendations to improve the standard as part of their review of the AIS. They are planning to publish the review this summer.
Over the coming months, we will work with our national campaign coalition to ensure that NHS prioritises the publication and implementation of the review.
Ongoing work
As Integrated Care Systems work to establish commissioning arrangements and leadership bodies, we communicate our recommendations to them independently, making them aware of their responsibilities to ensure providers comply with the AIS.
We are also working with Care Quality Commission to ensure its new assessment framework includes more precise standard requirements for compliance with the standard.
