Learning Disability Today
Supporting professionals working in learning disability and autism services

One third of NHS Trusts are failing to communicate effectively with people with learning disabilities

Just one in three (35%) NHS Trusts are meeting the legal requirement to adequately communicate with people who are blind, deaf or have a learning disability, according to research by Healthwatch.

The research reveals that people with learning disabilities and those with audio/visual impairments and losses are being increasingly failed by health services in having their communication needs met.

A quarter of Trusts don’t record patients communication needs

Healthwatch issued a Freedom of Information (FOI) request to 220 NHS providers to find out how they are delivering the Accessible Information Standard (AIS).

The AIS is a law which aims to make sure people with a disability or sensory loss are given information they can understand, and the communication support they need.

Of the 139 Trusts that responded, just half (53%) said they ask patients about their communication needs and what support they require, while a quarter (26%) said they didn’t record people’s communication needs on their patient’s file.

“Serious barriers” to healthcare

These poor communication standards are causing “serious barriers” to healthcare for people who are deaf, blind or have a learning disability, according to Dan Scorer, Head of Policy and Public Affairs at the learning disability charity Mencap.

This is reflected in a separate review, which found that changes to services that took place during the pandemic were especially acute for people who are blind, deaf or have a learning disability, with many reporting that they stopped getting information from the NHS in the formats they had been.

The review, which included the experiences of more than 6,000 people, also found that some services did not have basic support in place or were unwilling to provide the help that people are entitled to.

This included GPs refusing people access to a sign language interpreter, something that was particularly important during the pandemic due to the facemask mandate, which made lipreading an impossible task.

“When it’s accessible, there’s nothing I can’t do”

People who were not given communication support felt they instead had to rely on family and friends, forcing them to share sensitive health information and causing them to feel less independent.

Connor, who is blind and requires healthcare information in an electronic format as well as in Braille, said accessing information about his own health in a format he can understand has “often been very difficult”.

He said this has caused him to feel “forgotten, ignored, and not taken seriously.” Now, he’s asking for consistent training on accessible information for staff, so he can take responsibility for himself. “When it’s accessible, there’s nothing I can’t do,” he added.

Healthcare must be accessible to prevent preventable deaths

Mr Scorer says it is essential that reasonable adjustments are implemented so that people with additional communication needs can access healthcare effectively, as “research into the premature deaths of people with a learning disability has shown that people can miss out on the care they need when healthcare services don’t provide accessible information.”

He added: “The Accessible Information Standard was meant to ensure that disabled people received information in a way they could understand from healthcare services yet – despite six years having passed since the standard’s introduction – research shows that this still isn’t happening in many healthcare services.

“To tackle health inequalities it is absolutely vital that people are able to communicate with healthcare services and understand information about their healthcare, which is why Healthwatch England’s campaign to fully implement the Accessible Information Standard is critical to the health and wellbeing of the 1.2 million people with a learning disability in England.”

 

To read more about the ‘Your Care, Your Way’ campaign, click here.

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