Over a third of NHS trusts failing to provide proper communication to deaf, blind and disabled people

Just over a third, (35 per cent) of NHS trusts are not providing proper communication to people who are blind, deaf or have a learning disability, which could be causing "serious barriers" to accessing healthcare, according to new research.

A total of 139 NHS trusts responded to Healthwatch England's Freedom of Information (FOI) request, revealing that just over a quarter (26 per cent) of NHS services didn’t record people’s communication needs on their patient file or only do this some of the time.

The report also shows incidents where people reported staff were trying to communicate with deaf people by shouting. Deaf people were unable to lipread what staff at hospital were saying because of the widespread use of facemasks while others were asked to book GP appointments over the phone and one blind person was given paper forms to order a white cane.

Sir Robert Francis QC, chair of Healthwatch England said: "Our findings show clear evidence of a failure to protect the rights of our most vulnerable patients to accessible information and communication support through poor accountability across our health services.”

The watchdog sent Freedom of Information Act requests to every trust in the country asking for approaches to the Accessible Information Standard (AIS).

Only 57 per cent of the trusts said staff routinely share patients’ communication needs with other health and care services.

This failure puts services in breach of their duty under the AIS, a legal requirement created by NHS England in 2016.

The standard requires that all publicly funded health and social care providers identify, record, flag, share and meet the information and communication needs of those who use their services, to ensure equal access to healthcare.

Sir Robert said: “Health and care services are legally required to follow the Accessible Information Standard, yet currently there is no effective mechanism for holding them to account on how they put it into practice.

“People want clear, understandable information to enable them to make informed decisions about their health and care and get the most out of services.

"For instance, without proper communication support during GP or hospital appointments patients and their families can suffer psychologically with long-term consequences for their health and welfare.”

'It is vital people are able to communicate with healthcare services'

When people were not given communication support, they had to rely on family and friends. This made them feel less independent and forced to share sensitive health information with family members. Some people reported losing income because they had to take time off work to support their family members at medical appointments.

Some trusts admitted that low staff awareness of accessible communication, constrained resources and a lack of IT systems that would allow them to record patients’ communication needs prevented them from putting the right arrangements in place.

Dan Scorer, head of policy and public affairs at Mencap, said: “People with a learning disability are more likely to die avoidably and die far younger than the general population - often because of serious barriers to accessing healthcare.

"One of the key issues is making reasonable adjustments people need to access healthcare, and 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.

“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."

'This is unacceptable'

Alongside these findings, SignHealth partnered with a coalition of charities to review the NHS Accessible Information Standard, sharing the lived experience of patients alongside insights from NHS professionals. The report indicated that one in 10 disabled patients do not have equitable access to healthcare.

James Watson-O’Neill, chief executive, SignHealth said: “This is unacceptable, particularly when the right to do so is protected in law. The report urges the NHS to implement the Accessible Information Standard (AIS) now, by delivering training, updating patient record systems, providing alternative contact methods and strengthening accountability.”

Sir Robert added: “This research shows health and care services within the newly created 42 integrated care systems must act to ensure no one is excluded from access to healthcare because of their communication needs.

“NHS England needs to hold health and care services to account in the implementation of the Accessible Information Standard to protect these rights.”

To access the report, go to https://www.healthwatch.co.uk/news/2022-02-23/many-nhs-trusts-not-supporting-equal-access-care-deaf-and-blind-people